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Under Trump Proposal, Lawful Immigrants Might Be Inclined To Shun Health Benefits

The Trump administration is considering a policy change that might discourage immigrants who are seeking permanent residency from using government-supported health care, a scenario that is alarming some doctors, hospitals and patient advocates.

Under the proposed plan, a lawful immigrant holding a visa could be passed over for getting permanent residency — a green card — if they use Medicaid, a subsidized Obamacare plan, food stamps, tax credits or a list of other non-cash government benefits, according to a draft of the plan published by The Washington Post. Even the use of such benefits by a child who is a U.S. citizen could jeopardize a parent’s chances of attaining lawful residency, according to the document.

Health advocates say such a policy could frighten a far broader group of immigrants who will avoid government-supported health coverage, creating public health problems that could prove dire. About 3 million people received green cards from 2014 through 2016, government records show. Immigrants with visas or those who may have no legal status but plan to seek citizenship based on a close family relationship would be affected.

“We are very concerned that this rule, if finalized, would have a significant impact on health in this country,” said Erin O’Malley, senior director of policy for America’s Essential Hospitals, which discussed the plan with Trump administration officials in mid-April.

O’Malley said she fears that some visa holders and their families would steer clear of getting routine treatment and resort to going to emergency rooms for medical care. Such a change would “undermine the stability of our hospitals by creating uncompensated care costs and creating sicker patients,” O’Malley said.

Wendy Parmet (Courtesy of Northeastern University)

The policy change could force a mother to weigh the need for hospital inpatient care for an ailing newborn against losing her legal immigration status, said Wendy Parmet, director of the Center for Health Policy and Law at Northeastern University.

“The administration, in the draft, talks about self-sufficiency,” she said. “But we don’t expect that of [babies]” who are U.S. citizens because they were born in this country. “It’s extremely hardhearted.”

Pushback has begun even though the proposal is in the earliest stages of the rulemaking process.

Washington state Gov. Jay Inslee, a Democrat, is sending staff in mid-May to meet with the White House Office of Management and Budget, which is vetting the proposed rule. Inslee sent a letter on April 24 urging OMB Director Mick Mulvaney to consider the impact on tax-paying, lawful immigrants.

Gov. Jay Inslee (D-Wash.) (Courtesy of the Washington Office of the Governor)

“This will undoubtedly lead to people across the U.S. going hungry, not accessing needed medical care, losing economic self-sufficiency, and even becoming homeless,” Inslee wrote.

The leaked draft said immigration officials would count the use of one or more non-cash benefits by the applicant within three years as a “heavily weighed negative factor” in deciding whether to grant permanent residency.

On March 29, the Department of Homeland Security sent a version of the proposal to OMB, which reviews it for conflicts with existing law. Next, it will be published as a proposed rule that the public can comment on before it’s finalized.

Marilu Cabrera, public affairs officer with the U.S. Citizenship and Immigration Services, declined to comment on whether the draft published by the Post mirrors what the OMB is reviewing.

Dr. Julie Linton (Courtesy of Wake Forest Baptist Medical Center)

Fear in immigrant communities already weighs on physicians. Dr. Julie Linton, a spokeswoman for the American Academy of Pediatrics, treats many Latino immigrant families at an outpatient clinic in Winston-Salem, N.C. She said one woman from Mexico, who had a newborn baby and three other children, told Linton she was afraid to keep her family enrolled in the nutrition program for Women, Infants, and Children (WIC). “Is it safe to use WIC?” the woman asked her.

Linton said questions like that put pediatricians in a tough position. She said evidence shows enrolling in WIC leads to better health outcomes for kids. But what if it also puts the family at risk of being split apart?

“It feels very frightening to have a family in front of me, and have a child with so much potential … and be uncertain how to advise them” on whether to accept public benefits, Linton said.

Maria Gomez, president of Mary’s Center, which runs health clinics in Washington, D.C., and Maryland, said she’s seeing three to four people a week who are not applying for WIC and are canceling their appointments to re-enroll in Medicaid.

Maria Gomez (Courtesy of Mary’s Center)

The leaked draft of the proposal zeroes in on who is considered a “public charge.” The concept emerged in immigration law in 1882, when Congress sought to bar immigrants who were “idiots, lunatics” or those likely to become a burden on the government.

The notion of a “public charge” last surfaced in 1999, when the immigration service clarified the concept. Then and now, an immigrant considered a “public charge” is inadmissible to the U.S. if the person is likely to rely on the government for income, or lives in a government-funded long-term institution.

Yet the guideline published in 1999 clarified that legal residents were free to access non-cash benefits like Medicaid, food stamps and assistance for heating bills. “These benefits are often provided to low-income working families to sustain and improve their ability to remain self-sufficient,” the guideline says.

The proposal, as drafted, would upend that.

Under such a policy, anyone who had recent or ongoing use of a non-cash government benefit in the previous 36 months would likely be deemed a “public charge,” and therefore inadmissible to the U.S. The use of such benefits by a spouse, dependent parent or child would also be taken into account.

Applicants who have “expensive health conditions” such as cancer, heart disease or “mental disorders” and had used a subsidized program would also get a “heavily weighed” negative mark on their application, the draft says.

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Marnobia Juarez, 48, battled cancer successfully and is hoping her husband’s green card application is approved; she also dreams of one day getting her own. She said she never wanted to apply for public benefits until she was diagnosed with breast cancer in 2014. Since then, she has been treated at no cost under a program run by the state of Maryland.

“I’m alive thanks to this program,” said Juarez, who is a health volunteer with an immigrant advocacy group. “You don’t play with life, and they are playing with life.”

The draft says immigrants could post a minimum $10,000 bond to help overcome a determination that they are likely to be a “public charge.”

Such changes would affect people sponsored by a U.S. citizen family member, most employment-based immigrants, diversity visa immigrants and “certain non-immigrants,” the draft says. In 2016, 1.2 million people got their lawful permanent residence status, or a green card. Of the total, 566,000 were immediate relatives or spouses of U.S. citizens and 238,000 more were family-sponsored, Department of Homeland Security data show.

Some immigrants, such as refugees and asylees, would not be affected. Nor would the proposed changes apply to undocumented immigrants.

“We’re talking about middle-class and working families,” said Madison Hardee, senior policy attorney with the Center for Law and Social Policy, which has organized a coalition to fight the proposal. “This could really put parents in an impossible situation between seeking health assistance for their children and obtaining a permanent legal status in the U.S.”

The list of benefits includes the Children’s Health Insurance Program, known as CHIP; non-emergency Medicaid; the Supplemental Nutrition Assistance Program, or food stamps; WIC; and short-term institutionalization at government expense and others. The leaked draft notes that foreign-born and native-born Americans use such programs at similar rates.

The draft says the proposal is meant to ensure that people seeking to “change their nonimmigrant status are self-sufficient.” It notes “relevant congressional policy statements,” including one that says “the availability of public benefits [should] not constitute an incentive for immigration to the United States.”

KHN correspondent Emmarie Huetteman contributed to this report.

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Podcast: KHN’s ‘What The Health?’ The Politics Of Rising Premiums And Menu Labeling

Julie Rovner

Kaiser Health News


Read Julie's Stories Stephanie Armour

The Wall Street Journal


Read Stephanie's Stories Anna Edney



Read Anna's Stories Margot Sanger-Katz

The New York Times


Read Margot's Stories

Proposed insurance premium increases unveiled in Maryland and Virginia officially marked the start of finger-pointing on Capitol Hill this week, as Democrats and Republicans blamed each other for the dysfunction of the individual insurance market under the Affordable Care Act.

Meanwhile, President Donald Trump sent to lawmakers a budget “rescission” package that would take back some $7 billion from the Children’s Health Insurance Program. And, after many delays and considerable controversy, new rules requiring calorie counts on menus at chain restaurants took effect this week.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Stephanie Armour of The Wall Street Journal, Margot Sanger-Katz of The New York Times and Anna Edney of Bloomberg News.

Among the takeaways from this week’s podcast:

  • Trump’s recommendation that Congress rescind some federal funds that were appropriated for CHIP is providing a strong campaign club for Democrats, despite the fact that the Congressional Budget Office estimates the reductions would not actually deprive any children of coverage.
  • The rejection this week of Kansas’ request to cap lifetime Medicaid benefits sends a strong signal to other states that, despite the Trump administration’s invitation to states to shake up Medicaid, there are limits to what officials can approve.
  • New Hampshire, which this week received approval to set work requirements for some Medicaid enrollees, is taking a tougher line than other states, including mandating that enrollees work a greater number of hours and make up any hours missed.
  • Although research suggests that menu labeling in restaurants has minimal effect on customers, it may drive restaurants to increase the healthful food choices.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Kaiser Health News’ “When Credit Scores Become Casualties Of Health Care,” by Shefali Luthra.

Margot Sanger-Katz: The New Yorker’s “The Promise of Vaping and the Rise of Juul,” by Jia Tolentino.

Stephanie Armour: Politico’s “5 Unintended Consequences of Addressing the Opioid Crisis,” by Sarah Karlin-Smith and Brianna Ehley.

Anna Edney: The New York Times’ “Women With Breast Cancer Delay Care When Faced With High Deductibles,” by Reed Abelson.

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Hoping To See Your Doctor Via Telemedicine? Here’s A Quick Guide.

Tucked into the federal budget law Congress passed in February was a provision that significantly expands the use of telemedicine — long a hyped health care reform, and now poised to go mainstream within five to 10 years.

“There’s much broader recognition of the benefits,” said Mei Wa Kwong, executive director of the Center for Connected Health Policy, a research group that promotes telemedicine in Sacramento, Calif. “The law is the latest to make telemedicine more accessible. But we still have a ways to go before most consumers are aware of the option.”

The new law allows Medicare to cover telemedicine services for people who have had a stroke and those who get kidney dialysis, either at home or at a dialysis facility. It also permits Medicare Advantage Plans — private plans that enroll a third of Medicare beneficiaries — to offer telemedicine as a covered benefit.

Separately, as of Jan. 1, Medicare began allowing doctors to bill the government for monitoring certain patients remotely using telemedicine tools — for example, tracking heartbeat and rhythm, blood pressure and blood glucose levels.

Telemedicine, also referred to as telehealth, uses computers — and their display monitors, software and capacity for data analysis — to deliver virtual health services.

In the easiest-to-understand example, a patient is in one location and has an e-visit with the doctor in another location. They are connected via a secure video link. Proponents say that more sophisticated monitoring is on the horizon and that virtual encounters will become more commonplace.

As acceptance and adoption of telemedicine expands, so does coverage. All private health plans, Medicare, state Medicaid programs and the Department of Veterans Affairs now cover some e-visits — albeit with restrictions. More health centers and hospitals are launching virtual health centers. And websites offering virtual “doctor-on-demand” services are proliferating.

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Concerns exist, however. Doctors worry that they may get paid less if insurance reimbursement is lower for e-visits than in-person appointments, or that e-visits could undermine the doctor-patient relationship by reducing valuable face time. They point out that for some ailments, like strep throat, it’s best if doctors or other health providers see the patient.

Health economists, meanwhile, are concerned that e-visits could add to costs rather than constrain them — if, for example, doctors and patients abuse e-visits by scheduling them unnecessarily because they are quick and easy. Also, insurers may be motivated to push doctors to do more e-visits instead of in-person visits to save money. And for some people, access to proper equipment or internet access can be difficult.

“The potential for abuse is there,” says Dr. Robert Berenson, a Medicare expert at the Urban Institute. “We will need to prevent gaming and misuse of the system. But, generally, helping people avoid unnecessary doctor’s office and hospital visits is a good thing, if we do it right.”

Here’s a briefing on telemedicine basics:

Q: Are e-visits available from most hospitals and doctors?

Not yet. But access is increasing. Ask your doctor, clinic or hospital.

In some cities, medical centers are setting up telehealth “hubs” to handle patients. For example, Penn Medicine in Philadelphia launched its Connected Care center in February with 50 full-time employees, 24/7 access to care and a program to treat chronically ill patients at home. Some of the center’s e-visit services are open only to Penn Medicine employees, but other services are available to anyone, with a focus on residents of Pennsylvania, New Jersey, Delaware and Maryland, said Bill Hanson, vice president and chief medical information officer at Penn Medicine.

Similarly, Mercy Virtual in Chesterfield, Mo., a St. Louis suburb, serves patients throughout the Midwest, and those treated at Mercy Health’s network of 44 hospitals in five states. Launched in 2015, Mercy Virtual provided care to 750,000 people in 2017 with a team of 700 doctors, nurses and support staff.

Other medical centers with virtual health programs include Avera Health based in South Dakota; Cleveland Clinic in Ohio; Dignity Health in San Francisco; Intermountain Healthcare in Utah; and Kaiser Permanente, a managed-care health system in California and elsewhere.

Kaiser Permanente reported last year that 21 percent of its 110 million patient interactions in 2015 were e-visits. Officials there predict that by 2020 e-visits will exceed in-person visits. (Kaiser Permanente is not affiliated with Kaiser Health News, which is an editorially independent program of the Kaiser Family Foundation.)

Q: What restrictions do health plans, Medicare and Medicaid put on e-visits?

Health plan coverage varies, but most private insurers cover e-visits, and 34 states and the District of Columbia require that they do. A few states still require that a patient relationship be established with an in-person visit before the provider can bill for an e-visit. Check with your insurer about its policies.

Medicare’s coverage of e-visits is more restrictive. First, e-visits must take the place of an in-person visit. Second, with exceptions allowed under February’s budget law, Medicare largely restricts e-visits to those that occur in rural areas that have a shortage of doctors and/or hospitals. And third, most e-visits can’t occur when the patient is at home. They can be done from a variety of other locations, such as a rural health clinic, a dialysis center or skilled nursing facility. A bill in Congress would loosen that restriction.

In contrast, almost all state Medicaid programs cover e-visits in the home. But restrictions still apply. For example, only 22 states cover remote patient monitoring for Medicaid enrollees.

The Telehealth Resource Centers, a federally funded organization promoting telemedicine and providing consumer information, has detailed explanations of e-visit restrictions and limitations.

Q: Do I need special computer equipment?

No. E-visits and other forms of telemedicine are done over commonly available computers, laptops, tablets and smartphones — and are typically encrypted to protect privacy. Specialized equipment is usually needed for remote monitoring, such as blood pressure or heart rate. One vexing barrier: broadband availability in rural areas. Also, millions of low-income and older Americans still lack Wi-Fi in their homes.

Q: What services can I get through telemedicine?

Most e-visits are for primary care or follow-up services, such as assessing symptoms or checking on people who have had a medical procedure. But a growing number — no one keeps national statistics — cater to people with chronic conditions who are being monitored at home, said Kwong.

Dermatology e-visits are becoming especially common. You can send a close-up photo of a skin rash, mole or other problem for an immediate assessment. Psychotherapy by e-visit is also expanding.

Sometimes an e-visit may provide an initial medical assessment for an injury, wound or illness that is clearly not life-threatening. Some cities are testing ambulance services that use telemedicine to triage whether people need a trip to the hospital.

Q: Will I save money if I do an e-visit instead of going into the doctor’s office?

E-visits are generally less expensive than a trip to the doctor, but you may not see the difference if your insurance covers both with only a small copay or no copay. If you have a large deductible, however, an e-visit may mean you pay less out-of-pocket for that encounter.

Some states require insurers to make equal reimbursements for in-office and telemedicine consultations on simple matters.

Q: Are there downsides or risks with telemedicine and e-visits?

There’s no evidence so far that your risk of being diagnosed wrongly or treated inappropriately is any greater with an e-visit compared to an in-person visit.

When Credit Scores Become Casualties Of Health Care

After a devastating horse-riding accident in January 2017 landed him in the hospital for about 30 days, requiring trauma care and hospital-based therapy, Jeff Woodard considered himself lucky.

The bills amounted to hundreds of thousands of dollars. But Woodard’s employer-sponsored health insurance limited his out-of-pocket maximum payment to $5,000. He reached that “within like a day,” he recalled.

His retired parents relocated from their small town in Massachusetts to help Woodard, now 27, who lives just outside of Denver, through his recovery. With their support, and regular outpatient therapy, he returned to working full time in just two months.

But he didn’t expect another set of payments to haunt him and his parents for nearly a year, ultimately going to collections, and threatening to weaken his credit rating for years more.

While medical bills are a leading source of personal bankruptcy in the United States, a far more common problem is the widespread damage they do to people’s credit. Almost 40 percent of adults younger than 65 reported a lower credit score because of medical debt, according to the most recent Commonwealth Fund analysis, based on 2016 data.

That means greater difficulty with transactions such as financing mortgages, taking out student loans or purchasing cars.

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In Woodard’s case, his parents had been deliberate in making sure that all the care their son received was within his insurance network. But it turned out that the trauma doctors at the in-network hospital were not. They were employees of Aspen Medical Management, a Colorado Springs, Colo., physician staffing firm that employs physicians and contracts them out to hospitals.

That generated about $3,000 worth of out-of-network surprise bills, sent directly to Woodard. United Healthcare had paid Aspen the standard rate for in-network care, and Aspen expected Woodard to come up with the rest.

Stunned, Woodard complained to his insurer and Aspen, and filed paper appeals. His parents hectored Colorado lawmakers and filed complaints with both the hospital and various state agencies. But as notices from Aspen and then collections agencies piled up, with threats to report a delinquent bill to credit bureaus, his worry grew.

“I was planning on refinancing my mortgage,” he recalled, a change that he said would have saved him $15,000. “But if I got a bad hit to my credit score, it wouldn’t save me any money. I was paranoid about that.”

Woodard’s persistent appeals succeeded, and his debt was settled just days before it was set to hit his credit report.

“I was going to write [Aspen] a check, but my parents insisted I didn’t,” he said. “I was incredibly lucky — and it sucked.”

When contacted by Kaiser Health News, an Aspen spokeswoman said the company had no comment, declined to provide her full name and then hung up.

An Unpayable Bill, And Years-Long Damage

Even when patients like Woodard emerge with their credit unscathed after a medical crisis, the endless stream of collection letters and threats is a source of concern, often pressuring patients to pay medical bills they should not.

Medical debt isn’t like other financial obligations. It might result from unplanned illnesses and accidents, or because consumers do not fully understand the intricacies of a health plan. Good coverage is not necessarily sufficient to shield someone from considerable costs. It can take months of negotiation and processing for consumers to know what they actually owe.

Left unpaid, these bills are ultimately sent to collections agencies.

Eventually, that medical collection dings the patient’s credit, staying for as long as seven years, depending on state laws.

It’s part of a multibillion-dollar industry: In 2016, the most recent year for which there are figures, agencies collected just under 10 percent of the $792 billion consumers owed in overall debt, according to an industry report.

That same year, about 46.8 percent of collected debts were health care-related, according to data kept by the Consumer Financial Protection Bureau.

Any outstanding bills can have serious ramifications for consumers, explained Chi Chi Wu, a staff attorney at the Boston-based National Consumer Law Center, who specializes in medical debt and credit reporting.

“Let’s say, two years from now, mortgage rates plunge down to 2 percent and I want to refinance,” Wu said. “And the mortgage broker tells me, ‘You can’t get the best rate. Your credit score is 650 and it’s being dragged down from this unpaid collection from this hospital.’”

In that context, even an unmet deductible or copayment can be catastrophic.

Rodney Anderson, a mortgage broker in Plano, Texas, sees this regularly.

Starting in 2008, he noticed that almost half of his clients had weaker credit ratings — and therefore secured less favorable loans — because of medical debt. Even now, it affects “five to 10” of his clients each day.

The most recent federal analysis, a 2014 CFPB report, found that almost 20 percent of credit reports had at least one medical collection account listed. An average unpaid medical collection is about $580.

Protections that took effect in September 2017 could provide some relief.

As a result of a settlement reached by multiple state attorneys general and credit reporting agencies, collections agencies now must wait 180 days before reporting an unpaid medical bill to the credit bureaus to allow consumers adequate time to sort out insurance disputes.

A narrow provision of a banking regulation bill stalled in Congress would extend this waiting period to a full year for military veterans.

Apart from credit reporting modifications, some states, including Woodard’s Colorado, have laws on the books to protect patients from surprise billing, which many experts say trigger these financial issues. But these measures are also limited. They typically prohibit balance billing — charging patients for the difference between a list price and what insurance paid — in only certain care settings, or shield patients from the payment responsibility, though they don’t necessarily stop providers from sending a bill.

This patchwork approach reflects a larger truth: Efforts to legislate meaningful change have foundered.

Anderson, for instance, spent eight years and $2 million of his own money lobbying lawmakers in Washington to keep paid and settled medical debt off credit reports. He has since given up, after strong opposition from the credit reporting industry, which, Open Secrets data shows, consistently lobbied Congress about the legislation he supported.

Unpaid medical debt “is an important metric for lenders and creditors,” said Eric Ellman, senior vice president for public policy and legal affairs at the Consumer Data Industry Association, a major trade group. Citing changes such as the 180-day waiting period and upgrades to reporting systems, he added that “I’m not sure there’s more that needs to be done on this.”

Some observers argue, though, that changes in insurance design have made the issue more pressing.

Private insurance — both marketplace plans and those offered by employers — have shifted so consumers are responsible for more of their health care costs, noted Sara Collins, the Commonwealth Fund’s vice president for health care coverage and access. Middle-class people in particular, she added, are more likely to see unpayable medical bills, exposing them to the risk of medical debt.

A January 2017 study found that 20 percent of patients who went from the ER to the hospital in 2014 likely received an unexpected medical bill. Meanwhile, research published last July found that in 22 percent of emergency room cases from 2011 to 2015 —almost 1 in 4 — patients went to an in-network hospital but were treated by an out-of-network doctor.

The risks are more than just credit rating, Collins warned. Consumers delay education plans, or take out extra credit cards to pay off their bills. They may forestall other medical care, for fear of another unaffordable expense.

By comparison, Woodard got off easy. With the help of his parents, he eventually won the fight and his health plan paid the difference.

Woodard’s debt was settled just days before it was set to hit his credit report. He has since been able to purchase a new car — replacing an older one — with favorable terms that would have been unavailable to him had this situation turned out differently.

His 72-year-old father, Chuck Woodard, is now advocating for changes in how Colorado bills patients.

“No one tells you what your rights are,” Chuck Woodard said. “The only reason this consumer, Jeff, knew what was going on … was he had two retired parents who got pissed off.”

But Jeff Woodard’s case may not be over yet. This March, he received another bill for an ambulance he took to the hospital.

He has started negotiating once more, with his insurance plan and the fire department’s billing company. And based on his experience, he doesn’t expect an easy process.

“I was incredibly well-advantaged, and I barely made it through,” he said.

4 Takeaways From Trump’s Plan To Rescind CHIP Funding

President Donald Trump wants to employ a rarely used budget maneuver called “rescission” to eliminate $15 billion in federal spending, including $7 billion from the popular Children’s Health Insurance Program (CHIP).

Administration officials insist the cuts wouldn’t negatively affect any programs — rather, they would merely return money into the Treasury that Congress appropriated but is no longer needed.

In a statement on the White House blog, Russ Vought, the deputy director of the Office of Management and Budget, said the administration strongly supports the CHIP program. “Rescinding these funds will have no impact on the program,” Vought wrote. “At some point Congress will likely ‘rescind’ those funds as a budget gimmick to offset new spending elsewhere, as it did on the recently passed omnibus. Instead Congress should rescind the money now.”

But child health advocates are wary, particularly since the proposal comes a few months after Congress let funding authorization for CHIP lapse, which forced states to request millions in emergency contingency funds to keep children covered.

CHIP, which covers 9 million children from low-income families that earn too much to qualify for Medicaid, is mostly federally funded. But states operate the program within federal guidelines.

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As budget hawks and children’s advocates dispute the effect of the plan, here are some takeaways on the Trump proposal.

What Are Rescissions?

Since the 1970s, presidents have had the power to take back money from federal programs previously appropriated by Congress — if Congress approves. That budget tool is not regularly used. The last president to seek and get approval for one was President Bill Clinton.

Once the president recommends a rescission, Congress has 45 days to approve the request. It needs only a majority vote in each chamber to pass.

If it isn’t approved, the rescission does not take effect.

The president can recommend such cuts only with funds that Congress appropriates. Mandatory programs, such as Medicaid and Medicare, are not subject to rescissions.

Will Cutting $7 Billion From CHIP Really Have No Impact On The Program?

That’s hard to say.

There is $7 billion at stake. The administration says $5 billion can no longer be spent because the period for it to be sent to states has expired. The other $2 billion is being taken from a federal contingency fund for CHIP. That money is to be used only if they face a budget shortfall. The economy is improving, and the administration is betting demand for CHIP will wane, leaving little need for the contingency fund.

“Anytime you cut spending, there is going to be some effect, said Marc Goldwein, senior vice president of the nonpartisan Committee for a Responsible Federal Budget. “But in terms of CHIP, it’s likely close to be zero — these are tiny cuts.”

Still, child health advocates, who endured months of uncertainty about whether Congress would restore federal funding to CHIP in 2017, are worried.

“I think the cut to the contingency fund is particularly troubling,” said Bruce Lesley, president of First Focus, an advocacy group.

Why Is President Trump Using This Budgetary Maneuver?

After signing a $1.3 billion spending bill in March, the president came under pressure from conservatives in Congress to cut the federal deficit. It is projected to hit nearly $1 trillion next year.

One strategy, according to these conservatives, is to rescind money that has not been spent to keep lawmakers from tapping those funds to pay for other programs.

Should Parents Of Kids On CHIP Be Worried?

Yes, if Congress goes along with the cuts, said David Super, a law professor at Georgetown University. But political analysts suggest that’s not likely to happen since some Republican senators have already spoken out against the move. With Republicans holding a 51- 49 majority in the Senate — and Sen. John McCain (R-Ariz.) battling brain cancer back home — the president likely would need all Republicans in the Senate to pass a rescission.

“This is pure political theater, ugly theater,” Super said.

He notes the administration is telling conservatives the cuts will reduce the deficit. But in media calls, senior administration officials said the cuts won’t have any programmatic effects.

“If the money would not have been spent, there are no savings,” Super said. “Any rescission of money that would not be spent, by definition, cannot reduce the deficit.”

Other programs targeted for cuts include relief funds for Hurricane Sandy, which struck in October 2012, and money allocated to respond to a possible outbreak of the deadly Ebola virus.

Super noted health advocates should be most worried about the $800 million in rescissions identified by the administration to the Center for Medicare and Medicaid Innovation. This program was created by the 2010 Affordable Care Act to find ways to make health programs work more efficiently — and save money.

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Medicare Beneficiaries Feel The Pinch When They Can’t Use Drug Coupons

This week, I answered a grab bag of questions about drug copay coupons and primary care coverage on the health insurance marketplace.

Q: My doctor wants me to take Repatha for my high cholesterol, but my Medicare drug plan copayment for it is $618 a month. Why can’t I use a $5 drug copay coupon from the manufacturer? If I had commercial insurance, I could. I’m on a fixed income. How is this fair?

The explanation may offer you little comfort. Under the federal anti-kickback law, it’s illegal for drug manufacturers to offer people any type of payment that might persuade them to purchase something that federal health care programs like Medicare and Medicaid might pay for. The coupons can lead to unnecessary Medicare spending by inducing beneficiaries to choose drugs that are expensive.

“The law was intended to prevent fraud, but in this case it also has the effect of prohibiting Part D enrollees from using manufacturer copay coupons … because using the coupon would be steering Medicare’s business toward a particular entity,” said Juliette Cubanski, associate director of the Program on Medicare Policy at the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

The coupons typically offer patients with commercial insurance a break on their copayment for brand-name drugs, often reducing their out-of-pocket costs to what they would pay for inexpensive generic drugs. The coupons help make expensive specialty drugs more affordable for patients. They can also increase demand for the drugmaker’s products. If patients choose to use the coupons to buy a higher-cost drug over a generic, the insurer’s cost is likely to be more than what it would otherwise pay.

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In addition, consumers should note that the copay cards often have annual maximums that leave patients on the hook for the entire copayment after a certain number of months, said Dr. Joseph Ross, associate professor of medicine and public health at Yale University who has studied copay coupons.

The coupons may discourage patients from considering appropriate lower-cost alternatives, including generics, said Leslie Fried, a senior director at the National Council on Aging.

According to a 2013 analysis co-authored by Ross and published in the New England Journal of Medicine, 62 percent of 374 drug coupons were for brand-name drugs for which there were lower-cost alternatives available.

Q: Last year, my marketplace plan covered five primary care visits at no charge before I paid down my $2,200 deductible. This year, it doesn’t cover any appointments before the deductible, and I had to pay $80 out-of-pocket when I went to the doctor. Is that typical now? It makes me think twice about going.

Under the Affordable Care Act, marketplace plans are required to cover many preventive services, including an annual checkup, without charging consumers anything out-of-pocket. Beyond that, many marketplace plans cover services such as some primary care visits or generic drugs before you reach your deductible.

The likelihood of having a plan that offers some cost sharing for primary care before you reach your deductible (rather than requiring you to pay 100 percent of the cost until you hit that amount) varies significantly depending on whether you’re in a bronze, silver or gold plan, according to a recent analysis by the Robert Wood Johnson Foundation.

In 2018, 77 percent of silver-level plans offered some cost sharing for primary care visits before enrollees had paid off their typical deductible of $3,800, the analysis found. In most cases, that means people owe a copayment or coinsurance charge for each visit until they reach their deductible. A small number of plans offered a limited number of no-cost or low-cost visits first, and then people using more services either had to pay the full charge for each visit or owed cost sharing until the deductible was met.

Bronze plans were much stingier in what they offered for primary care before people reached their deductible, which was $6,400 or higher in half of plans. Only 38 percent of bronze plans offered any primary care coverage before the deductible, and generally patients still had to pay a copayment or coinsurace. A smaller percentage of bronze plans offered limited visits at no cost or low cost before the deductible.

The share of people who chose bronze plans grew from 23 percent in 2017 to 29 percent this year, said Katherine Hempstead, a senior policy adviser at the Robert Wood Johnson Foundation. While premiums are typically significantly lower in bronze plans than other “metal”-level plans, it can be worthwhile to check out how plans handle primary care services before the deductible, she said.

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How The Farm Bill Could Erode Part Of The ACA

Some Republican lawmakers continue to try to work around the federal health law’s requirements. That strategy can crop up in surprising places. Like the farm bill.

Tucked deep in the House version of the massive bill — amid crop subsidies and food assistance programs — is a provision that supporters say could help provide farmers with cheaper, but likely less comprehensive, health insurance than plans offered through the Affordable Care Act.

It calls for $65 million in loans and grants administered by the Department of Agriculture to help organizations establish agricultural-related “association” type health plans.

But the idea is not without skeptics.

“I don’t know that anyone at the Department of Agriculture, with all due respect, knows a darn thing about starting and maintaining a successful insurance company,” said Sabrina Corlette, a professor and project director at the Georgetown University Health Policy Institute.

Association health plans are offered through organizations whose members usually share a professional, employment, trade or other relationship, although the Trump administration is soon to finalize new rules widely expected to broaden eligibility while loosening the rules on benefits these plans must include.

Under that proposal, association plans would not have to offer coverage across 10 broad “essential” categories of care, including hospitalization, prescription drugs and emergency care. They could also spend less premium revenue on medical care.

Under the farm bill, the secretary of Agriculture could grant up to 10 loans of no more than $15 million each, starting next year, to existing associations whose members are ranchers, farmers or other agribusinesses.

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The language is strikingly similar to a bill introduced April 12 by Rep. Jeff Fortenberry (R-Neb.), a supporter of association health plans. He did not respond to calls for comment.

Although the farm bill is usually considered “must-pass” by many lawmakers, it is currently facing pushback because of controversy surrounding other parts of the measure, mainly language that would add additional work requirements to the food stamp program.

Still, the focus on association health plans won’t go away.

The plans — coupled with another Trump administration move to make short-term insurance more widely available — could draw healthier people out of the ACA markets, leaving the pool of beneficiaries with higher percentages of people who need medical care. And that, some say, could drive up premiums for those who remain.

The National Association of Insurance Commissioners, for example, has warned that association plans “threaten the stability of the small group market” and “provide inadequate benefits and insufficient protection to consumers.”

Actuaries have made similar arguments.

Others are concerned about the idea of the government providing funding for such plans.

“We have reams of experience with AHPs that have gone belly up … and the notion that we should put taxpayer money into them is irresponsible,” said Georgetown University’s Corlette.

She was referring to the industry’s mixed track record with plans. Some have served members well, but other plans have been marked by solvency problems that left consumers on the hook with unpaid medical bills or were investigated for providing little or no coverage for such things as chemotherapy or doctor office visits.

It’s not fair to simply focus on the failures, countered attorney Christopher Condeluci, who served as tax and benefits counsel to the Senate Finance Committee and now advises private clients, some of whom are interested in association plans.

“Some AHPs were not successful,” he agreed. “But there’s arguably more examples of AHPs that work. The trouble is everyone focuses on the negative.”

Although the GOP generally supports association plans, using taxpayer funds to help start them could prove problematic for some conservatives in Congress.

Many Republican lawmakers expressed concerns about the use of tens of millions of taxpayer dollars to start insurance co-ops that were part of the ACA, most of which failed.

“The hard-earned tax dollars collected from working Americans, sitting at Treasury right now, are not venture capital, said Rep. Kevin Brady (R-Texas) at a subcommittee hearing in November 2015. Currently, Brady is chairman of the powerful House Ways and Means Committee.

The provision could also be popular in rural areas.

“We think it’s a good idea,” said Rob Robertson, chief administrator for the Nebraska Farm Bureau Federation, whose group is considering sponsoring one.

About half of his members, Robertson said, have a spouse working a non-farm job, mainly for insurance coverage. Of those who buy their own plan, some are facing astronomical premiums and are looking for relief.

“I can’t think of any sector that is affected more by the huge premium increases under Obamacare than farmers and ranchers,” he said.

The farm bill — including the AHP provision — was approved by the House Committee on Agriculture in mid-April, and is currently awaiting floor consideration. Meanwhile, a final rule on the Trump AHP rule, which has drawn more than 900 comments from supporters and opponents, could be issued as early as this summer.

Federal Officials Say No-Go To Lifetime Limits On Medicaid

The Trump administration’s promise of unprecedented flexibility to states in running their Medicaid programs hit its limit Monday.

The Centers for Medicare & Medicaid Services rejected a proposal from Kansas to place a three-year lifetime cap on some adult Medicaid enrollees. Since Medicaid began in 1965, no state has restricted how long beneficiaries could remain in the entitlement program.

“We seek to create a pathway out of poverty, but we also understand that people’s circumstances change, and we must ensure that our programs are sustainable and available to them when they need and qualify for them,” CMS Administrator Seema Verma said Monday at an American Hospital Association meeting in Washington, D.C.

Arizona, Utah, Maine and Wisconsin have also requested lifetime limits on Medicaid.

This marked the first time the Trump administration has rejected a state’s Medicaid waiver request regarding who is eligible for the program.

Critics of time limits, who say such a change would unfairly burden people who struggle financially throughout their lives, cheered the decision.

“This is good news,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families, a Medicaid advocate. “This was a bridge too far for this CMS.”

Alker’s enthusiasm, though, was tempered because Verma did not also reject Kansas’ effort to place work requirements on some adult enrollees. That decision is still pending.

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CMS has approved work requirements for adults in four states — the latest, New Hampshire, winning approval Monday. The other states are Kentucky, Indiana and Arkansas.

All these states expanded Medicaid under the Affordable Care Act to cover everyone with incomes of more than 138 percent of the federal poverty level ($16,753 for an individual). The work requirements would apply only to adults added through that ACA expansion.

Kansas and a handful of states, including Alabama and Mississippi, that did not expand the program want to add the work requirement for some of their adult enrollees, many of whom have incomes well below the poverty level. In Kansas, an individual qualifying for Medicaid can earn no more than $4,600.

Adding work requirements to Medicaid has also been controversial. The National Health Law Program, an advocacy group, has filed suit against CMS and Kentucky to block the work requirement from taking effect, saying it violates federal law.

The Kansas proposal would have imposed a cumulative three-year maximum benefit only on Medicaid recipients deemed able to work. It would have applied to about 12,000 low-income parents who make up a tiny fraction of the 400,000 Kansans who receive Medicaid.

Kansas Gov. Jeff Colyer, a Republican, responded to the announcement saying state officials decided in April to no longer pursue the lifetime limits after CMS indicated it would not be approved.

“While we will not be moving forward with lifetime caps, we are pleased that the Administration has been supportive of our efforts to include a work requirement in the [Medicaid] waiver,” Colyer said in a statement. “This important provision will help improve outcomes and ensure that Kansans are empowered to achieve self-sufficiency.”

Eliot Fishman, senior director of health policy for the advocacy group Families USA, applauded Verma’s decision.

“The decision on the Kansas time limits proposal that Seema Verma announced today is the right one. CMS should apply this precedent to all state requests to impose time limits on any group of people who get health coverage through Medicaid — including adults who are covered through Medicaid expansion,” he said. “Time limits in Medicaid are bad law and bad policy, harming people who rely on the program for lifesaving health care.”

Today’s Special: Obamacare Menu Labeling Rules Ushered In

President Donald Trump has found one part of the federal health law palatable: He’s allowing Obamacare rules that require chain restaurants to post calorie counts to go into effect Monday.

The rules, which are among the final pieces of the 2010 Affordable Care Act to be implemented, require restaurants to list calories on all menus and menu boards. Restaurants will also have to provide on-site additional nutritional information, such as fat and sodium levels.

The law, intended to nudge Americans to eat healthier, applies to chains with at least 20 stores.

And it won’t be just fast-food and sit-down restaurants that are affected. Grocers, convenience stores, movie theaters, pizza delivery companies and even vending machines must meet the new requirements.

The menu labeling rules will improve public health, the Food and Drug Administration Commissioner Scott Gottlieb said last week in an interview. He pointed to studies showing that enlightened customers order, on average, up to 50 fewer calories a day.

While that equates to the calories in a small cookie, Gottlieb said, the impact compounded over weeks and months can deliver a large benefit.

“This is a meaningful, incremental step in addressing” the country’s obesity epidemic, he said.

Seeking to alleviate retailers’ concerns, the FDA delayed implementing the rules several times to give the food industry time to comply after finalizing the menu-labeling rule in 2013.

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The provisions are supported by consumer advocates and the National Restaurant Association, which wanted to avoid catering to a hodgepodge of requirements from cities and states.

But some food industry groups and retailers say they still don’t have all the answers and worry the rules will place an undue burden on shop owners.

The National Association of Convenience Stores expressed reservations about how its members will comply.

“Convenience retailers will welcome any flexibility the FDA may be able to provide in order to comply with this onerous rule,” said spokesman Jon Taets.

Conservatives in Congress also have repeatedly lashed out at the provisions, with the House passing a bill earlier this year that would modify them. The Senate has not acted on that legislation.

Even as the provisions go into effect, the FDA announced that over the course of the next year officials will seek to educate the industry about meeting the new rules, rather than enforcing them.

Many restaurant chains, including McDonald’s, Burger King, Taco Bell and Panera Bread, have listed calorie information for years. But some, including Legal Sea Foods and the Melting Pot, have not yet added the information. Officials for the Melting Pot said they plan to have nutritional information posted by the end of the month. Legal Sea Foods did not return calls for comment.

“Americans deserve to know what they’re getting when ordering for themselves and their families at chain restaurants, supermarkets and other food retailers,” said Margo Wootan, vice president for nutrition for the Center for Science in the Public Interest, a consumer advocacy group. “Menu labeling isn’t a silver bullet. It’s just one of dozens of things we should be doing to help Americans maintain a healthy weight and reduce their risk of diet-related health problems like diabetes, heart disease and cancer.”

But others see the issue differently.

Daren Bakst, a fellow with the conservative Heritage Foundation, said the law equates to government overreach.

“It’s not up to the government to influence what people eat — that should be left up to each individual,” he said.

Bakst said he likes having nutritional information on foods he buys but opposes the government mandate for retailers.

“Plenty of restaurants will be hurt by compliance costs,” he said.

Yet many restaurants say they are ready.

“This date is long overdue,” said Cicely Simpson, an executive vice president at the National Restaurant Association. Most chains don’t see the calorie information postings as hurting overall sales. Yet, she said, the information will lead some consumers to switch the foods they choose.

She said the FDA has been flexible with the industry, including efforts to clarify that promotional signs and flyers in stores are not the same as menus and don’t have to include calorie information.

Domino’s Pizza spokesman Tim McIntyre said his company has concerns about how its franchises will meet these requirements but is confident the changes won’t increase prices for consumers.

The pizza delivery company hopes the FDA will allow it to meet the provisions by posting nutritional information on its website as it has done for years, rather than on menu boards, he said. The company said 90 percent of orders are placed by phone or internet, and with hundreds of pizza combinations and sizes it would be difficult to list nutritional info for each one on a menu.

McIntyre said the menu labeling rules were meant to give consumers calorie information at the point where they are ordering. For pizza delivery companies that is rarely inside the store, he noted.

“All we are asking for is common-sense approach to put this information where people are … and we believe the internet is where people are going to go to get this information,” he said. The FDA has put out thousands of pages of guidance to help restaurants and other food providers comply with the law, such as helping grocery stores decide where to put information on salad bars. Under FDA guidance, if pizza delivery stores don’t have menu boards, they don’t have to add any under the law.

Gottlieb said he frequently uses restaurant’s calorie information on signs when ordering food. “I admittedly occasionally go to fast-food restaurants and take into consideration the calories,” he said. “I used to go to McDonald’s time to time to order an Egg McMuffin, but now I go for the Egg White Delight.”

According to McDonald’s, an Egg McMuffin packs 300 calories while the Egg White Delight has only 280.

Alarming Suicide Rate Jolts Texas Community Into Action

Kaiser Health News:States - May 07, 2018

TYLER, Texas — In the heart of northeast Texas, Tyler’s rolling landscape is dotted with churches and historical homes, and the city is known for its roses and flowering gardens. But the community also is shadowed by a grim statistic, one that leaders are striving to better understand and address.

Smith County, which encompasses Tyler and is home to more than 225,000 residents, has the highest suicide rate among the state’s 25 most populous counties.

From 2012 to 2016, there were 17 suicides annually per 100,000 residents, compared with 12.2 suicides statewide during the same five-year stretch, according to the most recent analysis by University of Texas (UT) System researcher Eileen Nehme. (Nationally, the rate for 2016 was 13.5 suicides per 100,000 residents, or about 44,000 deaths annually.)

Another report, also conducted by UT System researchers, found that the suicide rate for the broader 35-county region of northeast Texas was 43 percent higher than it was statewide in 2014.

These rates are age-adjusted. Since almost all causes of death vary by age, if you compared the stroke mortality rate in an older population to the stroke mortality rate in a younger population, you would expect the rate to be higher in the older population. Age adjustment reduces the effects of age differences across populations.

Local and state leaders pose various theories for the region’s greater vulnerability. It suffers from a shortage of mental health services and a higher use of opioids than in some other parts of the state. It also has a larger percentage of non-Hispanic white residents than statewide, a demographic whose suicide rates are significantly higher, and an engrained mix of religious beliefs, individualism and a fierce sense of privacy that can inhibit some from seeking treatment for depression and other stressors.

“I think the stigma is so great here,” said Valerie Holcomb, a Tyler licensed professional counselor. “There is sort of a pull-yourself-up-by-your-bootstraps mentality.”

But in the past several years, local efforts to tackle suicide rates have begun to ramp up, according to Holcomb and others.

The UT Health Science Center at Tyler, which provides medical services as well as training for new doctors, didn’t have a psychiatric unit until 2013. With the help of state funds, it has added psychiatric beds and a residency program for psychiatrists. The Smith County Sheriff’s Office now employs two officers trained on mental health issues who frequently respond in an unmarked car without flashing lights or sirens and try to get people in crisis to psychiatric help without arrests or using handcuffs.

Grass-roots efforts to fight stigma include a suicide prevention walk and an annual Tyler-based mental health conference.

Perhaps most significant is the formation of the Smith County Behavioral Health Leadership Team, chartered in 2015, which convenes meetings with dozens of local mental health leaders at least every other month to discuss treatment gaps and solutions.

They describe a fresh openness to discussing the underpinnings of suicide — inextricably tied to mental health and substance abuse issues — and a heightened effort to improve services and maximize those the community already has.

“I believe that we’re on the right track — we’re not there yet,” said Dr. Jeffery Matthews, who chairs the department of psychiatry and behavioral medicine at the UT Health Science Center here. “There’s a lot that we have to learn, and a lot that we have to do.”

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Smith County’s higher suicide rate may be shaped in part by demographics, as the rate statewide runs three times higher in whites than for Hispanics or blacks, said Molly Lopez, a clinical psychologist and the principal investigator for the Zero Suicide in Texas project, a federally funded initiative to seed local prevention efforts. In Smith County, 60 percent of residents are non-Hispanic white compared with 43 percent statewide, according to U.S. Census Bureau data.

Opioid use also might contribute to some suicides, said Andy Keller, president of the Meadows Mental Health Policy Institute. The Texas-based nonprofit research organization recently completed a report on substance abuse within the state that showed Smith and some nearby counties had experienced above-average rates of opioid-related deaths.

Opioid addiction, Keller said, both erodes one’s ability to build a happy and productive life and “lowers your inhibitions, so you’re more likely to act on your impulses.”

Dawn Franks, the project coordinator for the county behavioral health leadership team, credits local attorney Doug McSwane and his wife, Mary Mozelle “Mo” McSwane, with providing much of the local momentum, following their son’s suicide in 2012.

Since then, other local professionals have shared their own stories, pulling suicide out of the shadows, Franks said. “It just suddenly was a time when people could begin to actually talk about it and not be ashamed of it,” she said.

Symptoms And Stigma

Shortly after Patrick McSwane’s sophomore year at Texas Tech University, Doug McSwane fielded an unsettling phone call. His 20-year-old son wanted to know why his dad had joined the Mafia and had permitted a chip to be implanted in Patrick’s head.

For nine years of highs and lows, Doug and his wife sought medical opinions in Texas and elsewhere to help Patrick shed the hallucinations and delusions of schizophrenia.

“Patrick was a warrior,” Doug McSwane said. “He fought his disease with everything within him. And we lost.”

Patrick McSwane (second from right), with his parents, Doug and Mary Mozelle “Mo” McSwane, his sister, Marcie, and brother, Ryan, in May 2012, several months before he died. The family was celebrating Ryan’s graduation from Texas Tech University in Lubbock. (Credit: Janet Romine)

One of the toughest aspects, as the couple recently described it sitting in the living room of their Tyler home, was the acute sense of isolation. Mo McSwane tried to share her incessant worries about Patrick with friends but didn’t make much headway. Religious beliefs and the stigma of mental illness, which she acknowledged is now starting to change, can frame perceptions, she said.

“We’re in the Bible Belt here,” she said. “I think that sometimes people in churches think you can pray something away. You wouldn’t say that to somebody who was a diabetic.”

The first time Patrick threatened to kill himself, in 2004, Doug McSwane called the police, who took Patrick away in handcuffs. McSwane was later forced to testify that his son needed to be involuntarily committed for his own safety.

“I think it’s the hardest thing I’ve ever done,” he said, choking up.

After that, by and large, Patrick stayed on his medication, his parents said. He finished college at the University of Texas at Tyler and got partway through a master’s degree in psychology there.

But sometime in the final year of his life, he took his medication more sporadically.

Patrick was sitting in one of the family’s cars on a country road outside Tyler, wearing his favorite cross, when he took his life. “The policeman told us that he had his Christian music blaring as loud as he could get,” his mother said. Music had always eased Patrick’s symptoms.

“We don’t know how he got the gun,” Doug McSwane said. “I had taken all of the guns out of the house.”

Mending The Safety Net

Grieving and wanting to shed more light on mental health needs, Doug McSwane launched the first Peace of Mind Tyler conference in 2014. He also co-chairs the behavioral health leadership team, which gathered in late March over sandwiches in the basement of an Episcopal church.

In the front hall of the McSwanes’ home sits a bowl full of letters the couple received after the suicide of their son Patrick, who battled schizophrenia. (Charlotte Huff for KHN)

They heard an update on a long-term goal, to raise more than $2 million to build a 48-hour psychiatric unit to assist with immediate diagnosis and stabilization, easing the strain on local hospitals. A local pastor described an upcoming event for church leaders, focused on mental health challenges faced by veterans.

Tyler — the largest city in a nearly 200-mile stretch from Dallas to Shreveport, La. — serves as a medical hub for this largely rural region of the state. During the meeting, Matthews described how the UT Health Science Center in Tyler now has 44 state-funded psychiatric beds on-site and a staff of eight psychiatrists and four psychologists.

It’s still a struggle to meet mental health needs in Smith and nearby counties, Matthews said later. “We have a waiting list to get in to our patient services even with” the new resources.

For their part, the McSwanes now try not to reflect too much on the “what ifs”: if only there had been a mental-health-trained officer, or more psychiatric beds closer to home or less of the stigma that isolated Patrick and the family.

But their silence ended from pretty much the moment that Patrick died at age 29.

His siblings, Marcie and Ryan, wrote about his struggles with mental illness on Facebook. Doug McSwane spoke frankly at Patrick’s funeral. They were flooded with phone calls and visits and casseroles.

In the front hallway of their home, a large bowl sits prominently stuffed with the cards and the notes they received. “I keep it out, just as a representative of the love,” Mo McSwane said.

‘Pharma Bro’ Shkreli Is In Prison, But Daraprim’s Price Is Still High

It was 2015 when Martin Shkreli, then CEO of Turing Pharmaceuticals and the notorious “pharma bro,” jacked up the cost of the lifesaving drug Daraprim by 5,000 percent. Overnight, its price tag skyrocketed from $13.50 a pill to $750.

The move drew criticism from all corners. Congress hauled Shkreli in for questioning on television. Media outlets shamed the practice. The Pharmaceutical Research and Manufacturers of America (PhRMA), the powerful trade group for branded drugs, distanced itself, saying Turing “does not represent the values of @PhRMA” and kicked off a campaign it described as “more lab coat, less hoodie.”

Shkreli, 35, is now serving a seven-year prison term for securities fraud (unrelated to Daraprim). Turing has renamed itself Vyera Pharmaceuticals.

But Daraprim, which costs pennies to make and is used to treat the parasitic infection toxoplasmosis — which is rare in the United States — still retails for more than $750 per pill, according to drug website Vyera did not respond to multiple requests for comment.

The continued high price of the drug is a cautionary tale to those who hope that public shaming of a few “bad actors” can curb escalating drug prices, because the problem is rooted in the market’s underlying financial incentives.

Drug prices are “easy to raise and harder to lower, particularly if there’s no competition,” said Nicholson Price, an assistant professor at the University of Michigan Law School. “The mystery isn’t, ‘Why don’t drug prices go down?’ It’s more, ‘Why don’t they go up more?’”

That’s especially the case with a product like Daraprim, which benefits a relatively small group of people — about 2,000 Americans per year. That means less profit incentive for other companies to develop a competitor that could drive down prices.

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Joey Mattingly, an assistant professor at the University of Maryland School of Pharmacy, uses Daraprim as a case study in a university course he teaches on pharmaceutical business strategy, highlighting how the industry functions under current incentives.

“The market sort of sets it up where, if you need it, you have to pay for it,” he said. “A for-profit entity is going to raise the price.”

Branded drugs like Daraprim are more likely to be priced high without a clear justification, noted David Howard, a health economist and professor at Emory University.

Daraprim was first approved by the Food and Drug Administration more than 50 years ago, and the patent has long since expired for both the drug and its active ingredient. But there’s no generic equivalent in the United States.

Even with generic-drug competition, costs don’t always drop. In 2015 alone, 300 generic drugs — off-patent medications, which are typically cheap to make — saw price increases of more than 100 percent, according to a 2016 Government Accountability Office report.

“We don’t have a good model for pricing pharmaceuticals in this country and, as a result, we keep spending a lot more money,” Price said. “We avoid thinking about it, or avoid dealing with it, and as a result things get more problematic.”

As prices climb, Vyera has followed what has become a familiar pharmaceutical playbook to shift attention and costs, launching what it calls the Daraprim Direct program.

Commercially insured patients can get a company-sponsored coupon that guarantees they’ll pay no more than $10 out-of-pocket. Uninsured patients at 500 percent or less of the federal poverty level — about $82,300 for a family of two — won’t pay anything.

People with Medicare Part D coverage can apply for copay assistance from an “independent charitable foundation” to which Vyera has donated money. This option is listed on the Daraprim Direct website. Technically, Medicare beneficiaries cannot use company coupons, but many drug companies skirt that regulation by sending assistance through a separate intermediary — such as an independent charity. It’s common enough that the practice has recently come under federal scrutiny.

Critics are quick to point out that such programs — often deployed for high-priced drugs — may enable patient access but do nothing to address overall expense. Private insurers, Medicare or Medicaid must pay the tab, whether through increased premiums or strained public health budgets.

On average, Medicaid programs in 2017 paid $35,556.48 per Daraprim prescription, according to a Kaiser Health News analysis of federal data covering that year’s first three quarters.

That figure doesn’t account for any rebates state Medicaid programs likely receive from Vyera, which is undisclosed proprietary information. In Massachusetts, those deals mean the state’s net costs for Daraprim have remained largely unchanged since 2014, though the price tag is 75 times what it was, said a spokeswoman for the agency’s Executive Office of Health and Human Services.

But states have variable negotiating leverage and skills in pressing for discounts. And paying for high-cost drugs — especially those without a competitor — remains a serious challenge, she said.

Generally, Medicaid likely pays hundreds of dollars per Daraprim pill, said Matt Salo, executive director of the National Association of Medicaid Directors. A standard starting dose of two to three pills per day lasts one to three weeks. And that’s likely to generate costs much higher than they were before Shkreli started selling Daraprim.

KHN data correspondent Sydney Lupkin contributed to this report.

Note: To determine what Medicaid paid for Daraprim, Kaiser Health News used data made public by the Centers for Medicare & Medicaid Services. This figure represents a weighted average of Medicaid payments per prescription, across various strengths, package sizes, routes and labels. It does not include drug versions (represented by National Drug Codes) with fewer than 11 prescription fills per quarter.

KHN’s coverage of prescription drug development, costs and pricing is supported by the Laura and John Arnold Foundation.

Weak Oversight Blamed For Poor Care At California Nursing Homes Going Unchecked

California health regulators have allowed poor care to proliferate at nursing homes around the state, and the number of incidents that could cause serious injury or death has increased significantly in recent years, according to a stinging state audit released this week.

The state auditor singled out the California Department of Public Health for particular criticism, saying it had not performed necessary inspections or issued timely citations for substandard care. The audit also found that the department’s nursing home licensing decisions were inconsistent and lacking in transparency.

“Together, these oversight failures increase the risk that nursing facilities may not provide adequate care to some of the State’s most vulnerable residents,” California State Auditor Elaine Howle wrote.

Safety and accountability problems at nursing homes across the United States are rampant. Federal inspection reports, for example, show that infection control is routinely ignored. At the same time, the Trump administration has scaled back the use of penalties to punish nursing homes that put residents at risk of injury.

In California, confirmed cases of substandard care at nursing homes statewide increased by 31 percent from 2006 to 2015, according to the audit. And incidents of nursing home noncompliance that caused or could have caused serious injuries or fatalities rose by 35 percent in the same period.

In a written response, published in the auditor’s report, the public health department rejected the allegation of faulty oversight. “CDPH disagrees with this conclusion,” wrote Karen Smith, the agency’s director. “In fact, CDPH believes that the increased number of … deficiencies cited demonstrates that CDPH has increased its enforcement activities.”

But the audit showed that in the vast majority of cases where investigators found problems that could severely harm patients, the public health department failed to cite or fine the facility involved.

“There is an expectation of a level of care and safety,” said state Assemblyman Jim Wood (D-Healdsburg). “When that doesn’t happen, it’s really disconcerting.”

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Wood said it was “very, very disturbing” that the public health department was not holding nursing homes accountable. The failure to issue citations, as well as delays in issuing them, are particularly worrisome, he said. “They are not doing their job.”

The California legislature ordered the audit last year after a request by Wood, who chairs the Assembly Health Committee, and Sen. Mike McGuire (D-Healdsburg).

In her written response, Smith dismissed the claim that licensing by the department was inconsistent, saying the auditor did not completely understand the process. But she agreed the department should issue citations in a more timely way and said it is working on that. The agency has begun training investigators to write citations properly, and it is creating a standard template for them, she said.

The quality of care at nursing homes will be critical as baby boomers age and demand for these services grows, the auditor wrote.

The state audit also investigated three large private nursing home operators whose net incomes have skyrocketed over the past decade — from less than $10 million each in 2006 to between about $35 million and $54 million in 2015. It said the owners of the three companies are swelling their profits by doing business with companies they own or in which they have a financial interest.

The three companies, Brius Healthcare Services, Plum Healthcare Group and Longwood Management Corporation, paid between $37 million and $66 million to related companies from 2007 to 2015, according to the audit.

The report singled out Brius, which has been the subject of media coverage, investigations and wrongful death lawsuits. One report, by the National Union of Healthcare Workers, claimed that the owner, Shlomo Rechnitz, steered millions of dollars to companies he owns to provide goods and services for his nursing homes. The state audit found that Brius had been cited for poor care more often than other nursing home operators in the state.

Mark Johnson, a lawyer representing Brius, said the audit’s quality of care assessment was flawed because of errors in the data. The company’s profits rose because the company grew, but profit per bed actually declined, he said.

Transactions between related companies “is the industry standard,” Johnson argued. “It leads to increased efficiency.”

The practice is becoming more commonplace around the nation. Kaiser Health News found last year that about three-quarters of nursing facilities in the country outsource services to companies that they control or in which they have an interest. Nursing homes that do it have higher rates of patient injury, Kaiser Health News found.

The risk of such arrangements, according to the audit, is that owners will inflate their prices to increase cross-company profits and that it is easier for commonly owned companies to engage in fraud and conceal it.

Medi-Cal, the state’s health insurance program for low-income people, is the state’s largest payer of nursing home care. The audit concluded, however, that because of built-in safeguards, it is “extremely unlikely” that Medi-Cal would pay for the profits companies earn from their related-party transactions.

Still, Michael Connors, with California Advocates for Nursing Home Reform, expressed alarm that nursing home operators are making such big profits by doing business with their own companies. Nursing home chains are using these deals to “siphon off money intended for care in order to pad and hide profits” — and that hurts residents, he said.

Legislation pending in the California State Assembly would increase the transparency of dealings among nursing home owners.

Podcast: KHN’s ‘What The Health?’ Medicaid, Privacy And Tom Price’s Return

Julie Rovner

Kaiser Health News


Read Julie's Stories Joanne Kenen



Read Joanne's Stories Alice Ollstein

Talking Points Memo


Read Alice's Stories Margot Sanger-Katz

The New York Times


Read Margot's Stories

President Donald Trump’s former New York doctor says Trump’s lawyer and private head of security “raided” his office and took the medical files relating to Trump, an act described by White House press secretary Sarah Huckabee Sanders as “standard operating procedure.” Except that’s not how the federal health privacy law is supposed to work.

Meanwhile, Seema Verma, who heads the federal agency in charge of Medicare and Medicaid, met with reporters for a wide-ranging discussion of states’ efforts to remake their Medicaid programs and the administration’s goals of encouraging people to work to help lift them out of poverty.

Plus, Robert Blendon, a professor at Harvard University’s Kennedy School of Government and its T.H. Chan School of Public Health, talks about how health issues fit into the complex politics of the 2018 midterm elections.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Joanne Kenen of Politico, Alice Ollstein of Talking Points Memo and Margot Sanger-Katz of The New York Times.

Among the takeaways from this week’s podcast:

  • Five states are seeking permission from federal officials to impose a lifetime limit on Medicaid eligibility. But despite the many changes the Trump administration officials have been making to Medicaid, they have shown no public interest in this yet.
  • Trump is considering regulations that would defund Planned Parenthood from the Title X Family Planning Program. Although anti-abortion groups would applaud such a move, it could backfire on the Republicans in November by energizing a wave of blue voters in the midterm elections.
  • Although former HHS Secretary Tom Price raised eyebrows this week with his comment disparaging the removal of the penalty for not having insurance, that stance is somewhat consistent with the administration’s earlier promise to find new ways to regulate the insurance markets.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Kaiser Health News’ “Peak Health Plan Premiums Give Rise To Activism – And Unconventional Solutions,” by Rachel Bluth

Joanne Kenen: The New York Times’ “Injecting Drugs Can Ruin a Heart. How Many Second Chances Should a User Get?” by Abby Goodnough

Alice Ollstein: The Commonwealth Fund’s “First Look at Health Insurance Coverage in 2018 Finds ACA Gain Beginning to Reverse,” by Sara R. Collins, Munira Z. Gunja, Michelle M. Doty and Herman K. Bhupal

Margot Sanger-Katz: Politico’s “Who the Hell Is This Person? Trump’s Mar-A-Lago Pal Stymies VA Project,” by Arthur Allen

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Sprained Your Ankle? The Cost Of A Brace Could Sprain Your Wallet.

One July evening, Carol Harnett was in a crosswalk in downtown Portland, Ore., when a driver made an illegal turn and hit her. Transported by ambulance to a hospital, she was diagnosed with a severely sprained right ankle and left wrist, as well as a concussion.

At the emergency room, doctors gave her steel-reinforced braces for her wrist and ankle and told her she was free to go.

“But I can’t walk,” Harnett, president of the nonprofit Council for Disability Awareness, recalled saying. With a third-degree sprain, the ligaments in her right ankle were completely torn and she couldn’t bear weight on it.

“They said, ‘If you broke a bone, we could give you a wheelchair, but you didn’t — so, we don’t think your insurance will cover it,’” she recalled. Instead, after signing a waiver agreeing to pay whatever her insurance didn’t cover, they gave her a pair of crutches to use while in Portland to give a speech.

After being hit by a car, Carol Harnett was unable to walk temporarily because of the severe sprain in her right ankle. But doctors told her that her insurance would likely not cover a wheelchair. (Courtesy of Erin Caruso)

Her hotel was more accommodating, loaning her a wheelchair at no charge.

If you have a car accident or get hurt on the ballfield or trip on the stairs, chances are good that you have no idea how your insurer would cover the wheelchair, walker or knee brace you may need.

Your cost for “durable medical equipment,” as these devices are called, may be small compared with the bills for your emergency or specialist care. But if you’re paying for such equipment out-of-pocket, it’s worth your time to look into your coverage and figure out how to get the best deal.

Harnett’s 2015 accident was later determined to be work-related, and the workers’ compensation program paid for her care. If that hadn’t been the case, she would have been on the hook for the crutches because her own insurance plan didn’t cover any durable medical equipment that could be purchased over the counter. It would have covered the reinforced wrist and ankle braces, but only after she met her deductible.

“Historically, [durable medical equipment] has always been a weak point in coverage,” said Harnett, who is familiar with these insurance issues because of her disability work. A typical employer plan covers 80 percent of the cost after the deductible is met, according to Harnett.

But some consumers may not get that benefit. “We’re seeing more skinny plans with no durable medical equipment coverage at all,” said Thomas Ryan, president and CEO of the American Association for Homecare, an advocacy organization for home care equipment manufacturers and providers.

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Insurers Often Have Preferred Providers

Under the Affordable Care Act, many insurance plans are required to cover a range of essential services, such as hospitalizations and prescription drugs. But durable medical equipment isn’t among them, except for breast pumps, which most plans must cover.

These days, insurers often contract with selected medical supply companies to provide equipment, just as they negotiate rates for other services. But patients often don’t realize that, said Alice Bell, a physical therapist and senior payment specialist at the American Physical Therapy Association, a professional group. Patients who don’t use an insurer’s preferred provider may be charged a higher rate or have to pay the entire amount out-of-pocket, she said.

“It’s important to make sure the supplier is in-network, even if the doctor prescribes it, because it varies,” Bell said.

When Bruce Lee, 48, strained a ligament in his left leg, his doctor prescribed a walking boot and gave him a list of medical suppliers. The doctor warned Lee to make sure he chose one in his insurance network.

Lee selected a supplier near his Fairfield, Conn., home that he described as a “medical Disneyland” of assistive devices. Although it was convenient, the supplier didn’t accept his insurance. He paid about $320 for the boot and used his flexible spending account to cover the cost.

To make matters more confusing, hospitals, urgent care centers and physicians may themselves negotiate with insurers or Medicare to become an approved supplier of medical equipment for their patients, or they may contract with a medical supply company to provide those items.

Wanda Wickizer didn’t know what to think when her 23-year-old daughter got a $40 bill from a medical supply company for a wrist brace she received at an urgent care center after falling down stairs at a friend’s house in Norfolk, Va.

The company was in her daughter’s insurance network, as it turned out.

Still, “it boggled my mind that they were allowed to bill her, because she never saw anyone from there,” Wickizer said.

Whatever the arrangement, the key for the patient is to find out whether whoever is supplying the equipment is in their insurance network and how much they’ll owe out-of-pocket.

Insurers might approve coverage of medical equipment only if a provider certifies it’s medically necessary. Even with a doctor’s OK, approval isn’t assured. The “fancier” a piece of equipment is, the more challenging it is to get an insurer to agree that it’s medically necessary, said Dr. Angela Gardner, who practices in Dallas and is a past president of the American College of Emergency Physicians.

“In general, for a commercial [insurer], basic crutches will be covered, forearm crutches are partially covered, and hands-free crutches won’t be covered,” she said, referring to a crutch that attaches to the injured leg and allows someone to move around without relying on their hands or arms.

Yet for some patients, shopping for such equipment is not an option. They need it on the spot or, like Harnett, are unable to get around well enough to go somewhere to buy it. If the patient can wait, many medical device suppliers deliver equipment to the home, or many devices can be purchased online.

Opting Not To Use Insurance

Beyond weighing in- and out-of-network options, patients have an option on durable medical equipment they don’t typically get when choosing medical services: buying over the counter.

This might prove significantly cheaper than using an insurance plan. A pair of standard armpit crutches, for example, may cost $40 at the local pharmacy, while the insurance copayment might be $100.

“A savvy consumer will look at the copay and see whether or not they need to use their insurance,” said Gardner.

Cynthia B. Sosnowski (left) thought the $1,400 bill her mother, Barbara Barrall, received after getting a new knee brace must have been a mistake since she could find an identical brace for sale for less than $100. But the orthopedist’s office said the charge was what the insurer allowed. (Courtesy of Cynthia B. Sosnowski)

Sometimes the prices insurers agree to pay for durable medical equipment are significantly higher than the price online or at the drugstore. That differential can be important if someone has a high-deductible plan and owes the entire amount.

An orthopedist suggested that Barbara Barrall, of Medford, N.J., replace her simple knee brace with a hinged model that could bend. When the bill arrived, Barrall’s daughter, Cynthia B. Sosnowski, thought the $1,400 charge must be a mistake. She went online and found the identical brace for between $79 and $99 at sporting goods and medical supply stores.

But when she called the orthopedist’s office, the woman said there was no mistake. That was the amount the doctor was allowed to charge the insurer. When Sosnowski called the insurer, she was told not to worry: Her mother’s share of the charge was just $145; the rest was covered by a retiree employer plan.

Sosnowski wasn’t placated. “This is why insurance is so expensive in our country,” she said. She has filed a grievance with the insurer to protest the charge.

As Proton Centers Struggle, A Sign Of A Health Care Bubble?

The Maryland Proton Treatment Center chose “Survivor” as the theme for its grand opening in 2016, invoking the reality-TV show’s tropical sets with its own Tiki torches, palm trees and thatched booths piled with pineapples and bananas.

It was the perfect motif for a facility dedicated to fighting cancer. Jeff Probst, host of CBS’ “Survivor,” greeted guests via video from a Fiji beach.

But behind the scenes, the $200 million center’s own survival was less than certain. Insurers were hesitating to cover procedures at the Baltimore facility, affiliated with the University of Maryland Medical Center. The private investors who developed the machine had badly overestimated the number of patients it could attract. Bankers would soon be owed repayment of a $170 million loan.

Only two years after it opened, the center is enduring a painful restructuring with investors poised for huge losses. It has never made money, although it has ample cash to finance operations, said Jason Pappas, its acting CEO since November. Last year it lost more than $1 million, he said.

Volume projections were “north” of the current rate of about 85 patients per day, Pappas said. How far north? “Upper Canada,” he said.

For years, health systems rushed enthusiastically into expensive medical technologies such as proton beam centers, robotic surgery devices and laser scalpels — potential cash cows in the one economic sector that was reliably growing. Developers got easy financing to purchase the latest multimillion-dollar machine, confident of generous reimbursement.

There are now 27 proton beam units in the U.S., up from about half a dozen a decade ago. More than 20 more are either under construction or in development.

But now that employers, insurers and government seem determined to curb growth in health care spending and to combat overcharges and wasteful procedures, such bets are less of a sure thing.

The problem is that the rollicking business of new medical machines often ignored or outpaced the science: Little research has shown that proton beam therapy reduces side effects or improves survival for common cancers compared with much cheaper, traditional treatment.

(Story continues below.)

If the dot-com bubble and the housing bubble marked previous decades, something of a medical-equipment bubble may be showing itself now. And proton beam machines could become the first casualty.

“The biggest problem these guys have is extra capacity. They don’t have enough patients to fill the rooms” at many proton centers, said Dr. Peter Johnstone, who was CEO of a proton facility at Indiana University before it closed in 2014 and has published research on the industry. At that operation, he said, “we began to see that simply having a proton center didn’t mean people would come.”

Sometimes occupying as much space as a Walmart store and costing enough money to build a dozen elementary schools, the facilities zap cancer with beams of subatomic proton particles instead of conventional radiation. The treatment, which can cost $48,000 or more, affects surrounding tissue less than traditional radiation does because its beams stop at a tumor rather than passing through. But evidence is sparse that this matters.

And so, except in cases of childhood cancer or tumors near sensitive organs such as eyes, commercial insurers have largely balked at paying for proton therapy.

“Something that gets you the same clinical outcomes at a higher price is called inefficient,” said Dr. Ezekiel Emanuel, a health policy professor at the University of Pennsylvania and a longtime critic of the proton-center boom. “If investors have tried to make money off the inefficiency, I don’t think we should be upset that they’re losing money on it.”

Investors backing a surge of new facilities starting in 2009 counted on insurers approving proton therapy not just for children, but also for common adult tumors, especially prostate cancer. In many cases, nonprofit health systems such as Maryland’s partnered with for-profit investors seeking high returns.

Companies marketed proton machines under the assumption that advertising, doctors and insurers would ensure steady business involving patients with a wide variety of cancers. But the dollars haven’t flowed in as expected.

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Indiana University’s center became the first proton-therapy facility to close following the investment boom, in 2014. An abandoned proton project in Dallas is in bankruptcy court.

California Protons, formerly associated with Scripps Health in San Diego, landed in bankruptcy last year.

A number of others, including Maryland’s, have missed financial targets or are hemorrhaging money, according to industry analysts, financial documents and interviews with executives.

  • The Hampton University Proton Therapy Institute in Virginia has lost money for at least five years in a row, recording an operating loss of $3 million in its most recent fiscal year, financial statements show.
  • The Provision CARES Proton Therapy Center in Knoxville, Tenn., lost $1.7 million last year on revenue of $23 million — $5 million below its revenue target. The center is meeting its debt obligations, said Tom Welch, its president.
  • Centers operated by privately held ProCure in Somerset, N.J., and Oklahoma City have defaulted on debt, according to Loop Capital, an investment bank working on deals for new proton facilities.
  • A facility associated with the Seattle Cancer Care Alliance, a consortium of hospitals, lost $19 million in fiscal 2015 before restructuring its debt, documents show. Patient volume is growing but executives “continue to be disappointed in the slower-than-expected acceptance of proton therapy treatment” by insurers, said Annika Andrews, CEO of SCCA Proton Therapy.
  • A center near Chicago lost tens of millions of dollars before restructuring its finances in a 2013 sale to hospitals now affiliated with Northwestern Medicine, documents filed with state regulators show. The facility is “meeting our budget expectations,” said a Northwestern spokesman.

Representatives from ProCure and the facilities in San Diego and Hampton did not respond to repeated requests for interviews.

“In any industry that’s really an emerging industry, you often have people who enter the business with over-exuberant expectations,” said Scott Warwick, executive director of the National Association for Proton Therapy. “I think maybe that’s what went on with some of the centers. They thought the technology would grow faster than it has.”

In the absence of evidence showing protons produce better outcomes for prostate, lung or breast cancer, “commercial insurers are just not reimbursing” for these more common tumors, said Brandon Henry, a medical device analyst for RBC Capital Markets.

The most expensive type of traditional, cancer-fighting radiation — intensity modulated radiation therapy — costs around $20,000 per treatment, while others cost far less. The government’s Medicare program for seniors covers proton treatment more often than private insurers but is insufficient by itself to recoup the massive investment, analysts said.

The rebellion by private insurers “is very, very good” and may signal the health system “is finally figuring out how to say no to low-value procedures,” said Amitabh Chandra, a Harvard health policy professor who has called proton facilities unaffordable “Death Stars.”

Proton centers are fighting back, enlisting patients, legislators and nonprofits to push for reimbursement. Oklahoma has passed and Virginia has considered legislation to effectively require insurers to cover proton therapy in more cases.

An entire day at the 2017 National Proton Conference in Orlando was dedicated to tips on getting paid, including a session titled “Strategies for Engaging Health Insurance on Proton Therapy Coverage.”

Proton facilities tell patients the therapy is appropriate for many kinds of cancer, never mentioning the cost and guiding them through complicated appeals to reverse coverage denials. The Alliance for Proton Therapy Access, an industry group, has online software for generating letters to the editor demanding coverage.

In hopes of navigating a difficult market, many new centers are smaller — with one or two treatment rooms — and not as expensive as the previous generation of units, which typically have four or five rooms, like the Baltimore facility, and cost $200 million or more.

Location is also critical. Treatment requires near-daily visits for more than a month, which may explain why larger centers such as Maryland’s never attracted the out-of-town business they needed.

To make the finances work, hospitals are combining forces. The first proton beam center in New York City is under construction, a joint project of Memorial Sloan Kettering, Mount Sinai and Montefiore Health System.

Smaller facilities, which can cost less than $50 million, should be able to keep their rooms full in many major metro areas, said Prakash Ramani, a senior vice president at Loop Capital, which is helping develop such projects in Alabama, Florida and elsewhere.

Maryland’s center hopes to break even by year’s end, executives said. That will involve refinancing, converting to nonprofit, inflicting losses on investors and issuing municipal bonds.

But plans call for four centers soon to be open in the D.C. area.

“It’s a real arms race,” said Johnstone, the former proton-center CEO, who has co-authored papers on proton-therapy economics. He is now vice chair of radiation oncology at Moffitt Cancer Center in Tampa, which doesn’t have a proton center. “What places need now are patients — a huge supply of patients.”

‘A Persistent Puzzle’: Californians Embrace Medicaid — But Food Stamps? Not So Much.

Kaiser Health News:States - May 02, 2018

Millions of low-income Californians eligible for food stamps are not receiving the benefit, earning the state one of the lowest rankings in the nation for its participation in the program.

Just three states — all much more conservative than the Golden State — have lower rates of participation, according to the latest available federal data. The poor performance stands in sharp contrast to California’s leadership on enrollment in Medi-Cal, the state’s version of Medicaid, which also serves people living in low-income households.

The reasons for California’s low rate of participation in the food assistance program, known as CalFresh, remain a “persistent puzzle,” said Kim McCoy Wade, chief of the CalFresh branch of the state’s Department of Social Services. But she and others suggest it may be due to the less-than-optimal quality of customer service and a bulky bureaucracy.

About 4.1 million Californians, or 70 percent of those eligible, are enrolled in CalFresh. That leaves about 2 million who could be getting the benefit but aren’t, according to a January report citing the 2015 federal data.

The national average is 83 percent. Several states — including Illinois, New Mexico and Oregon — report 100 percent enrollment of those who qualify for the food stamp program, known at the federal level as the Supplemental Nutrition Assistance Program, or SNAP.

Medi-Cal now serves more than 13.5 million people, or about one-third of California’s population, a number significantly boosted by Medicaid’s expansion under the Affordable Care Act. Only about 322,000 people who qualify for Medi-Cal aren’t signed up, according to a 2016 report by University of California-Berkeley researchers. They estimate that more than 90 percent of those eligible for Medi-Cal who don’t have another source of insurance are enrolled.

But California has begun leveraging its vast pool of new Medi-Cal beneficiaries to boost enrollment in CalFresh. Officials are building upon relationships between county welfare departments and new Medi-Cal enrollees, using electronic records on Medicaid recipients to identify food stamp candidates and then guiding them through the enrollment process.

“We are taking the successes from the Affordable Care Act and are turning to our next-biggest program and trying to apply those lessons,” said McCoy Wade. “The Medi-Cal-CalFresh connection is something where we think there is a lot of room to grow.”

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The push comes as both programs are under threat from Washington, D.C. Just last month, Republicans in Congress unveiled a farm bill that would mandate stricter work requirements for SNAP beneficiaries. Several times over the past few years, President Donald Trump and congressional Republicans have proposed overhauling the Medicaid program to rein in costs.

The food stamp program is administered at the county level — and there are 58 counties. Only 10 states run their programs that way. “Because we are decentralized … it takes us longer to move the whole ship,” McCoy Wade said.

However, that explanation does not fully address the issue in California, since Medicaid, too, is run by counties.

About 74 million Americans are on Medicaid and about 42 million people are in the food program.

“Doing things to help integrate the programs can be mutually beneficial, both for saving on administrative costs and being able to enroll more families,” said Michael Katz, a research associate at the Urban Institute. SNAP and Medicaid have different eligibility rules, but they serve similar populations.

“It’s not a perfect overlap, but it is a pretty close Venn diagram,” said Jared Call, managing nutrition policy advocate at California Food Policy Advocates.

Several California counties have tried to be proactive in enrolling food stamp candidates. San Francisco County placed a CalFresh eligibility worker at a public hospital and a community clinic. Los Angeles County mailed over 1 million flyers to Medi-Cal recipients who potentially qualified for food stamps.

San Bernardino County has self-service kiosks and staff members at the entrances of county offices, who help people enroll in CalFresh if they are interested. “It’s a one-stop shop,” said Nancy Hillsdale, who manages an office in Colton, Calif.

But residents can be reluctant to apply. Some immigrants living in the country legally fear that if they receive food stamps it may affect their chances of becoming citizens later. (Undocumented immigrants don’t qualify, but any family members who are citizens do.) Others feel the “stigma around food stamps,” said Gladys Deloney, Sacramento County’s deputy director of human services. That sentiment is not as prevalent in seeking help with medical expenses, she said.

The percentage of Medi-Cal beneficiaries enrolled in CalFresh varies widely by county. In 2016, for example, San Francisco County enrolled 31 percent of its Medi-Cal recipients in the food stamp program compared with nearly double that rate in Fresno County. A coalition of food advocates recommended last year that the state set a target for counties, and that the counties launch campaigns to raise awareness about food assistance.

In San Diego County, officials printed CalFresh materials for health fairs and sent texts to everyone who applied for Medi-Cal with a link to apply for the food benefits, said Rick Wanne, director of eligibility operations for the county. But Wanne said enrolling people in CalFresh is a lot more difficult than in Medicaid. “There is a laundry list of long-standing … rules and regulations that make it difficult to get on the program,” he said.

For example, applicants for CalFresh must be re-interviewed every year and update their information every six months. Medicaid, by contrast, does annual renewals without requiring interviews.

McCoy Wade said CalFresh eliminated some of the most burdensome requirements, including providing fingerprints, and it’s starting to make a difference. The state increased its participation rate from 66 percent to 70 percent in the most recent report. That occurred as the economy improved and fewer needed the help. “We are closing the gap,” though there is still work to be done, McCoy Wade said.

Lack of transportation, long lines at county offices and lack of flexibility in setting appointment times may also contribute to low participation, county officials said. And paperwork often gets mailed to residences, making it harder for homeless people or those who move frequently to stay enrolled. That’s what happened to 25-year-old Crystle Conant, who lives only part time at her father’s house in San Bernardino County.

“When I swipe my card at the store and it gets declined, then I know,” she said. “I haven’t renewed in time.”

Postcard From D.C.: Kicking Around The ACA? For Tom Price, That’s So 2017.

In a surprising reversal, Dr. Tom Price said he now thinks getting rid of the individual mandate was a bad idea.

Yet this is the same Tom Price who only last summer laid the groundwork for the mandate’s eventual dismantling, saying it was “driving up the costs for the American people.”

In some of his first public remarks since resigning as secretary of Health and Human Services amid a scandal about his travel expenses last September, Price criticized the elimination of the Affordable Care Act’s penalty for those who don’t have insurance.

“There are many, and I’m one of them, who believes that that actually will harm the pool in the exchange market,” he said Tuesday, as one of several dozen keynote speakers at the annual World Health Care Congress in Washington. “Because you’ll likely have individuals that are younger and healthier not participating in that market, and consequently that drives up the costs for other folks within that market.”

At the conference, Price re-introduced himself — a third-generation physician who did “a short stint at HHS” — to insurers, drugmakers and other health industry types.

Washington could be forgiven for thinking they had met before.

As a congressman and then HHS secretary, he’d been a vocal critic of the ACA, lambasting its many elements — including the individual mandate — and pressing for the law’s full repeal. Months after Price’s resignation, that penalty was removed by Congress as part of a tax bill even as the ACA itself remained, having withstood multiple Republican attempts to kill it.

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It has been seven months since Price stepped down amid reports he misspent hundreds of thousands of dollars of taxpayer money on private charter and military air travel. Price sidestepped questions Tuesday about the Trump administration and his change of heart on the individual mandate.

But Price’s re-emergence offered a snapshot of a tarnished former Trump administration official working on his next act. In January, he joined the board of the Atlanta-based Jackson Healthcare, a health care staffing and technology company.

A conference spokeswoman did not respond to inquiries about the decision to invite Price and whether he was paid to give remarks. The conference organizers played down Price’s remarks, billed as “a candid perspective” on the prospects for efforts to repeal and replace the Affordable Care Act and timed early on the third day of the four-day conference. He was conspicuously absent from the headshots of featured speakers splashed across the conference website and cagey about his plans for the future, referring only to his “advisory roles” when asked.

Gone was the Tom Price who, as a leading critic of the ACA while a Republican congressman from Georgia, attracted the attention of President Donald Trump. But it was the administration’s fight against the ACA that, by many accounts, cost him Trump’s support.

Price “better get the votes,” Trump said in a speech last July, days before the Senate rejected one of the last in a round of attempts to repeal President Barack Obama’s signature health care law. “Otherwise I will say, ‘Tom, you’re fired’.”

“From a policy standpoint, the repeal-and-replace battle last year was kind of the height of political frustration, wasn’t it?” Price mused to the audience Tuesday.

Instead of hammering the ACA, Price offered a brisk, occasionally perfunctory assessment of the health care landscape, ticking off a list of challenges (regulation, bad; wearables such as Fitbits, good) and developments (the health care market, stable; association health plans, under review). The states are doing their own assessments and reacting to it — and rightfully so, he said, pointing to decisions by Republican-led states such as Utah to expand Medicaid. (He had opposed the expansion of Medicaid as a congressman.)

On this, Price could offer an expert up-close opinion: “These are states that have looked at the situation, don’t necessarily see a solution coming out of Washington.”

Members Appointed to New Pain Management Best Practices Inter-Agency Task Force

HHS Gov News - May 01, 2018

The U.S. Department of Health and Human Services (HHS) announced today the appointment of 28 members to the new Pain Management Best Practices Inter-Agency Task Force (Task Force).

The Task Force will hold its inaugural public meeting on May 30, 2018, from 9:30 a.m. to 5 p.m. ET, and on May 31, 2018, from 9 a.m. to 3:30 p.m. ET, in the Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C.

The Task Force was established to propose updates to best practices and issue recommendations that address gaps or inconsistencies for managing chronic and acute pain. HHS is overseeing this effort with the U.S. Department of Veterans Affairs and U.S. Department of Defense.

The Task Force, which was authorized by section 101 of the Comprehensive Addiction and Recovery Act of 2016, is assigned the following responsibilities:

  • Determining whether there are gaps or inconsistencies in pain management best practices among federal agencies;
  • Proposing updates to best practices and recommendations on addressing gaps or inconsistencies;
  • Providing the public with an opportunity to comment on any proposed updates and recommendations; and
  • Developing a strategy for disseminating information about best practices. 

“In order to defeat America’s crisis of opioid addiction, one of our top four priorities at HHS, we need to understand and address how we got here,” said HHS Secretary Alex Azar. “Part of the story is the need for greater access to effective pain management options. We are proud to be part of this unprecedented inter-agency task force, which will examine and recommend updates to best practices that help address the real problem of pain in America.”

The Task Force, which will be chaired by Vanila M. Singh, M.D., chief medical officer, HHS Office of the Assistant Secretary for Health, consists of representatives from relevant HHS agencies, the Departments of Veterans Affairs and Defense and the Office of National Drug Control Policy. Non-federal representatives include individuals representing diverse disciplines and views, including experts in areas related to pain management, pain advocacy, addiction, recovery, substance use disorders, mental health, minority health and more. Members will also include patients, representatives from veteran service organizations, the addiction treatment community and groups with expertise in overdose reversal, including first responders, medical boards and hospitals.

Members of the public may attend the meeting in person or via webcast. For more information, visit the Task Force’s web page.

The Task Force members are:


Sondra M. Adkinson, Pharm.D., C.P.E.: Clinical Pharmacist, Bay Pines Veterans Administration Healthcare System, Bay Pines, Florida.

Amanda Brandow, D.O., M.S.: Associate Professor of Pediatrics in Hematology/Oncology, Medical College of Wisconsin, Milwaukee, Wisconsin.

Jianguo Cheng, M.D., Ph.D.: Professor of Anesthesiology, Director of the Cleveland Clinic Multidisciplinary Pain Medicine Fellowship Program, Cleveland, Ohio.

Daniel Clauw, M.D.: Director, Chronic Pain and Fatigue Research Center; Professor of Anesthesiology, Medicine (Rheumatology) and Psychiatry, University of Michigan, Ann Arbor, Michigan.

Jonathan C. Fellers, M.D.: Medical Director, Integrated Medication-Assisted Therapy, Maine Medical Center; Medical Director, Maine Tobacco Help Line, MaineHealth Center for Tobacco Independence, Portland, Maine.

Howard L. Fields, M.D., Ph.D.: Professor Emeritus, Departments of Neurology and Physiology, University of California at San Francisco, San Francisco, California.

Rollin M. Gallagher, M.D., M.P.H.: Clinical Professor of Psychiatry and Anesthesiology and Critical Care, Director for Pain Policy Research and Primary Care, Penn Pain Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.

Halena M. Gazelka, M.D.: Assistant Professor of Anesthesiology and Perioperative Medicine, Mayo Clinic College of Medicine and Sciences; Chair, Mayo Clinic Opioid Stewardship Program; and Director of Inpatient Pain Services, Division of Pain Medicine, Mayo Clinic, Rochester, Minnesota.

Nicholas E. Hagemeier, Pharm.D., Ph.D.: Associate Professor of Pharmacy Practice, Gatton College of Pharmacy, East Tennessee State University (ETSU); Research Director, ETSU Center for Prescription Drug Abuse Prevention and Treatment, Johnson City, Tennessee.

Michael J. Lynch, M.D.: Medical Director, Pittsburgh Poison Center; Assistant Professor, University of Pittsburgh Department of Emergency Medicine, Pittsburgh, Pennsylvania.

John J. McGraw, Sr., M.D.: Medical Director, OrthoTennessee; and County Commissioner, Jefferson County, Tennessee. 

Mary W. Meagher, Ph.D.: Professor and Coordinator of the Clinical Health Psychology Program at Texas A&M, College Station, Texas. 

John V. Prunskis, M.D.: Founder, co-Medical Director, Illinois Pain Institute, Elgin, Illinois.

Mark Rosenberg, D.O., M.B.A.: Chairman, Emergency Medicine, and Chief Innovations Officer, St. Joseph’s Health; and Board of Directors, American College Emergency Physicians, Paterson, New Jersey.

Molly Rutherford, M.D., M.P.H.: Certified Addiction Specialist, Founder, Bluegrass Family Wellness, PLLC, Crestwood, Kentucky.

Bruce A. Schoneboom, Ph.D.: Chief Learning Officer, American Association of Nurse Anesthetists, Park Ridge, Illinois.

Cindy Steinberg: National Director, Policy and Advocacy, U.S. Pain Foundation; Policy Council Chair, Massachusetts Pain Initiative, Lexington, Massachusetts.

Andrea Trescot, M.D.: Interventional Pain Physician; Director, Pain and Headache Center, Eagle River, Alaska.

Harold K. Tu, M.D., D.M.D.: Associate Professor and Director, Division of Oral and Maxillofacial Surgery, School of Dentistry, University of Minnesota; Chairman, Department of Dentistry, Fairview Hospital, University of Minnesota Medical School, Minneapolis, Minnesota.

Sherif Zaafran, M.D.: President, Texas Medical Board, Austin, Texas.


Steven Daviss, M.D.: Senior Medical Officer, Office of the Chief Medical Officer, HHS Substance Abuse and Mental Health Services Administration.

Scott Griffith, M.D.: Director, National Capital Region Pain Initiative and Program Director, National Capital Consortium Pain Medicine Fellowship, U.S. Department of Defense.

Sharon Hertz, M.D.: Director, Division of Anesthesia, Analgesia, and Addiction Products, Center for Drug Evaluation and Research, Food and Drug Administration.

Jan L. Losby, Ph.D., M.S.W.: Lead, Opioid Overdose Health Systems Team, Division of Unintentional Injury Prevention, Centers for Disease Control and Prevention.

Linda L. Porter, Ph.D.: Director, Office of Pain Policy, National Institute for Neurological Disorders and Stroke, National Institutes of Health.

Friedhelm Sandbrink, M.D.: Acting National Program Director, Pain Management Specialty Care Services, Veterans Administration Health System; and Director, Pain Management Program, Department of Neurology, U.S. Department of Veterans Affairs.

Vanila M. Singh, M.D., MACM: Chief Medical Officer, HHS Office of the Assistant Secretary for Health.

Cecelia Spitznas, Ph.D.: Senior Science Policy Advisor, Office of the Director, Office of National Drug Control Policy.

HHS partners to develop new treatment for seizures caused by nerve agents

HHS Gov News - May 01, 2018

A new treatment for seizures that cannot be stopped with current medicines will be developed under an agreement between the U.S. Department of Health and Human Services (HHS)’ Office of the Assistant Secretary for Preparedness and Response (ASPR) and Proniras Corporation of Seattle, Washington. Uncontrollable seizures are a devastating result of exposure to nerve agents and can be deadly or lead to permanent brain damage.

“Nerve agents are the most toxic and rapidly acting of the known chemical warfare agents,” explained Rick Bright, Ph.D., director of the Biomedical Advanced Research and Development Authority (BARDA), a component of ASPR. “Although the Strategic National Stockpile includes anti-seizure medications, those medications may not be completely effective in stopping all seizures. To save more lives and improve long-term health for survivors, a second-line anti-seizure medication is needed.”

Under the 9-month, approximately $3 million agreement announced today, Proniras will develop Tezampanel as a treatment for seizures that have not been stopped by benzodiazepines, a class of drugs that includes the stockpiled medication diazepam (better known as valium). The contract can be extended up to a total of approximately $89.5 million over five years.

In clinical trials Tezampanel, which works by a different mechanism than diazepam, was shown to be safe. Recent studies also have shown Tezampanel to be an effective seizure treatment in rats with soman nerve agent poisoning, even when the drug was given after a significant delay. Soman is an extremely toxic man-made chemical warfare agent, originally developed as an insecticide in Germany in 1944.

Under the BARDA contract, Proniras will conduct studies to evaluate whether Tezampanel also stops seizures in rats even after benzodiazepine treatment has failed to do so. These studies may lead Proniras to apply for FDA approval of Tezampanel to treat seizures that do not respond to benzodiazepines, including seizures resulting from nerve agent exposure. Proniras also will explore other potential commercial uses for the drug.

Development of this new drug is part of ASPR’s efforts to develop medical products, procedures, and capabilities to protect health and save lives in terrorist attacks, including those using nerve agents. Nerve agents were used in an attack in the Tokyo subway in 1995 and in the Syrian civil war.

BARDA’s preparedness efforts include development of eight novel and repurposed therapeutics and PRISM, the first evidence-based decontamination procedures for use after exposure to any of four classes of chemical agents.

BARDA continues to seek proposals for the development of effective products to treat injuries caused by chemical agents, including new products and new indications for products already in clinical use. The products must be easy to use in a mass casualty situation and safe and effective for all segments of the population. Proposals are accepted through the Broad Agency Announcement BARDA- BAA-18-100-SOL-00003 at the Federal Business Opportunities website,

The project announced today is part of BARDA’s integrated portfolio for the advanced research and development, innovation, acquisition, and manufacturing of medical countermeasures – vaccines, drugs, therapeutics, diagnostic tools, and non-pharmaceutical products for public health emergency threats. These threats include chemical, biological, radiological, and nuclear agents, pandemic influenza, and emerging infectious diseases.

HHS works to enhance and protect the health and well-being of all Americans, providing for effective health and human services and fostering advances in medicine, public health, and social services. Within HHS, ASPR’s mission is to save lives and protect Americans from 21st century health security threats. ASPR leads the nation’s medical and public health preparedness for, response to, and recovery from disasters and public health emergencies.

To learn more about ASPR, visit For more information about partnering with BARDA, visit

The U.S. Department of Health and Human Services and the American Society of Nephrology to Launch Kidney Innovation Accelerator

HHS Gov News - May 01, 2018

The U.S. Department of Health and Human Services (HHS) is pleased to announce a partnership with the American Society of Nephrology to launch the Kidney Innovation Accelerator (KidneyX), KidneyX will engage a community of researchers, innovators, and investors to enable and accelerate the commercialization of therapies to benefit people with and at risk for kidney diseases through a series of prize competitions and coordination among federal agencies and the private sector.

More than 40 million Americans live with kidney diseases and 703,243 experience kidney failure. With an aging population and rising prevalence of diabetes and hypertension, more Americans need dialysis than ever before. Patients with chronic kidney disease continue to have limited treatment options and are particularly vulnerable in natural disasters when local dialysis centers are damaged or closed for more than a few days.

“Over the last decade, patients with cancer and heart disease have benefitted from innovative improvements in therapies, drugs, devices and digital health tools. Patients suffering from kidney disease deserve the same opportunity. With KidneyX, HHS sends an important message to innovators and investors regarding the desire and demand to help patients suffering from chronic kidney disease,” said HHS Chief Technology Officer, Bruce D. Greenstein.

To prevent kidney diseases as well as improve the lives of the 850,000,000 people worldwide currently affected, KidneyX will accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX will address the barriers innovators commonly identify as they look to bring new drugs and technologies in kidney care to market by:

  • Providing funding through prizes to promising innovators selected through a prize competition;
  • Encouraging better coordination across the HHS agencies including the National Institutes of Health, the Food and Drug Administration, and the Centers for Medicare & Medicaid Services in order to help clarify the path toward commercialization;
  • Creating a sense of urgency to develop new therapies to treat chronic kidney disease

“By launching KidneyX, ASN and HHS have sent a clear signal that the kidney space is ripe for accelerating innovation in the fight against kidney diseases. KidneyX will serve as that catalyst while encouraging the venture capital community that has previously been reluctant to invest in kidney therapeutics to revisit it as a target for potential investments,” said ASN President, Mark D. Okusa, MD, FASN.

KidneyX will accept applications for its first round of prize funding in late summer 2018. Individuals who are interested in learning more about KidneyX are encouraged to visit and join the mailing list.