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Updated: 15 hours 37 min ago

For Low-Income Drug Users, Medi-Cal Offers A Fresh Start

September 08, 2017

Breann Johnson stopped using heroin on Mother’s Day this year, determined to end her 13-year addiction. Days later, she began three months of residential treatment in Riverside, Calif. — all paid for by California’s Medicaid program.

Johnson, who has two young sons, said other inpatient drug rehab programs had refused to accept Medicaid, and she knew outpatient care would not be enough to break her habit.

“I couldn’t stop,” said Johnson, 28. “With my drug, you are either sick all day or you have to do it to make yourself feel better.”

As the opioid epidemic burns a path of devastation through communities across the nation, California is leading the way in revamping treatment for low-income residents like Johnson. Before this year, the state’s Medicaid program, known as Medi-Cal, covered only limited and episodic care. Now, it pays for a much broader range of treatment including expanded access to medications, inpatient beds, individual therapy and case managers.

Use Our ContentThis KHN story can be republished for free (details).

The five-year pilot project, which gives the state flexibility in its use of federal money, was approved in 2015 by the agency that oversees Medicaid. The California project officially started earlier this year. Virginia, Massachusetts and Maryland also have federal permission to expand drug treatment for Medicaid members. Other states, including West Virginia and Michigan, are seeking it.

California’s drug rehab overhaul makes it easier for Medi-Cal members to get care and improves their chances of long-term recovery, state health officials said. It also aims to reduce costs by decreasing use of emergency rooms and hospitals and keeping drug-addicted enrollees out of jail and out of the child welfare system.

“It is such a dramatic change to our substance abuse field,” said Marlies Perez, chief of the substance use disorder compliance division at the state Department of Health Care Services. “We turned off one system one day and turned on a whole new system the next.”

Health officials and service providers say that with the federal waiver they are finally able to address addiction as a chronic disease. Instead of simply getting short-term outpatient care, Medi-Cal beneficiaries can receive ongoing treatment from detoxification through recovery, tailored to their specific needs.

“The old traditional way was a rather canned approach to recovery,” said Bruce Copley, director of the Department of Alcohol and Drug Services in Santa Clara County.

The state does not yet know how much the changes will cost, because the program is open-ended: Anyone eligible for the services in the participating counties can receive them. In previous years, the state has spent about $180 million annually on drug rehabilitation for Medi-Cal beneficiaries. Perez said the state is only beginning to receive bills and is hoping to prove to the federal government that the changes will actually reduce overall costs related to substance abuse.

Drug rehab providers still fear for the future of Medicaid given the ongoing debate over health care in Washington, said Tom Eby, clinical director of Whiteside Manor, a nonprofit residential treatment center in Riverside. If his clients lost their Medicaid coverage — or the federal government ended California’s drug rehab program — it could imperil the progress being made, Eby said.

“It would go back to what it was, with these folks dying on the street,” he said.

Thirty-eight of the state’s 58 counties have joined California’s Medi-Cal pilot. Riverside and San Mateo started in February. Other counties, including Los Angeles and San Francisco, have come on board since.

The big increase in the availability of residential care is a significant aspect of the program, since it could reduce the chance of relapse or overdose for those with severe addictions. Previously, Medicaid did not cover treatment in inpatient rehab facilities with more than 16 beds. That resulted in long waiting lists. Inpatient stays typically were paid for by the county, a private insurer or the person being treated.

In Riverside County, Medi-Cal recipients used to wait more than two months for a bed. Now, many of them get one in a day or two, according to Rhyan Miller, the county’s substance abuse services program administrator.

At MFI Recovery’s women’s center in Riverside, known as A Woman’s Place, residents now have access to a licensed vocational nurse, a driver to take them to appointments and a discharge planner. They can stay 90 days (with a possible 30-day extension) and longer if they are pregnant.

Breann Johnson (left) and Brittany Stearns arrived at A Woman’s Place in Riverside on the same day in May, both determined to get sober. The women, who are both on Medi-Cal, are making plans to go to a sober-living facility after leaving the center. (Anna Gorman/KHN)

Johnson said she was grateful to get in without a long wait. If she hadn’t, the Riverside woman said, “I would either be on the streets or dead.”

Brittany Stearns, another resident, said her parents had paid $48,000 for an earlier stay at a private residential treatment center to treat opioid addiction. When she relapsed three years later, the 32-year-old Palm Springs resident knew her parents wouldn’t pay for it again.

“I needed help,” said Stearns, whose 2-year-old daughter, Molly, lives with her at the center. “If Medi-Cal didn’t pay for this, I am afraid to think about where I would be.”

Johnson and Stearns both completed their residential treatment and are now getting follow-up outpatient care.

Perez, of the health care department, said that although the project is scheduled to run five years, the state does not intend to return to the old way of doing business. It hopes to persuade the federal government to continue allowing spending flexibility. “This is already impacting not only Medi-Cal but other individuals who are receiving substance abuse disorder services,” she said.

That’s because clinics have made sweeping changes to meet the new Medi-Cal requirements for participation, including the recruitment and training of new employees. Counties are also now using guidelines set by the American Society of Addiction Medicine — another condition of participation.

When the new program started, thousands of people called in to a substance abuse line for screening and referral, said Miller of Riverside County. That was up from fewer than 200 calls the previous month.

“We didn’t expect this,” he said. “It has been absolutely crazy. The sheer numbers of calls completely overwhelmed and also excited us.”

At Whiteside Manor, director Ron Vervick said the additional reimbursement from Medi-Cal enabled him to hire more counselors, drivers, nurses and intake workers. Many of the residents at Whiteside are homeless and mentally ill. In the past, he said, they didn’t get the care they needed.

Kendall Jenkins sought treatment at Whiteside Manor in Riverside after years of heavy drinking and using methamphetamines, heroin and pills. He was relieved when he heard that Medi-Cal would cover his stay at the inpatient drug rehabilitation center. (Anna Gorman/KHN)

One resident of Whiteside Manor, Kendall Jenkins, sought treatment in early May after years of heavy drinking and drug use that included heroin, methamphetamines and pills — “anything I could get my hands on.” A former college golfer and hotel valet, Jenkins, 30, was homeless off and on, and spent stretches living in his car. He recently left the facility, found work at a hotel and is staying in a sober-living home nearby.

Jenkins said that when he learned Medi-Cal would cover his stay at Whiteside, he felt relieved. He was able to participate in individual counseling and group therapy and said the center “saved my life.”

Though he still thinks a lot about using heroin, he knows where he would end up if he did.

“It’s not worth it,” he said. “I know I can do this.”

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

Climbing Cost Of Decades-Old Drugs Threatens To Break Medicaid Bank

August 14, 2017

Skyrocketing price tags for new drugs to treat rare diseases have stoked outrage nationwide. But hundreds of old, commonly used drugs cost the Medicaid program billions of extra dollars in 2016 vs. 2015, a Kaiser Health News data analysis shows. Eighty of the drugs — some generic and some still carrying brand names — proved more than two decades old.

Rising costs for 313 brand-name drugs lifted Medicaid’s spending by as much as $3.2 billion in 2016, the analysis shows. Nine of these brand-name drugs have been on the market since before 1970. In addition, the data reveal that Medicaid outlays for 67 generics and other non-branded drugs cost taxpayers an extra $258 million last year.

Even after a medicine has gone generic, the branded version often remains on the market. Medicaid recipients might choose to purchase it because they’re brand loyalists or because state laws prevent pharmacists from automatically substituting generics. Drugs driving Medicaid spending increases ranged from common asthma medicines like Ventolin to over-the-counter painkillers like the generic form of Aleve to generic antidepressants and heartburn medicines.

Among the stark examples:

  • Ventolin, originally approved in 1981, treats and prevents spasms that constrict patients’ airways and make it difficult to breathe. When a gram of it went from $2.58 to $2.90 on average, Medicaid paid out an extra $54.5 million for the drug.
  • Naproxen sodium, a painkiller originally approved in 1994 as brand-name Aleve, went from costing Medicaid an average of $0.72 to $1.70 a pill, an increase of 136 percent. Overall, the change cost the program an extra $10 million in 2016.
  • Generic metformin hydrochloride, an oral Type 2 diabetes drug that’s been around since the 1990s, went from an average 10 cents to 13 cents a pill from 2015 to 2016. Those extra three pennies per pill cost Medicaid a combined $8.3 million in 2016. And cost increases for the extended-release, authorized generic version cost the program another $6.5 million.
This KHN story also ran in The Daily Beast. It can be republished for free (details).

“People always thought, ‘They’re generics. They’re cheap,’” said Matt Salo, who runs the National Association of Medicaid Directors. But with drug prices going up “across the board,” generics are far from immune.

Historically, generics tend to drive costs lower over time, and Medicaid’s overall spending on generics dropped $1.6 billion last year because many generics did get cheaper. But the per-unit cost of dozens of generics doubled or even tripled from 2015 to 2016. Manufacturers of branded drugs tend to lower prices once several comparable generics enter a market.

Medicaid tracks drug sales by “units” and a unit can be a milliliter or a gram, or refer to a tablet, vial or kit.

Old drugs that became far more expensive included those used to treat ear infections, psychosis, cancer and other ailments:

  • Fluphenazine hydrochloride, an antipsychotic drug approved in 1988 to treat schizophrenia, cost Medicaid an extra $8.5 million in 2016. Medicaid spent an average $1.39 per unit in 2016, an increase of 347 percent vs. the year before.
  • Depo-Provera was first approved in 1960 as a cancer drug and is often used now as birth control. It cost Medicaid an extra $4.5 million after its cost more than doubled to $37 per unit in 2016.
  • Potassium phosphates — on the market since the 1980s and used for renal failure patients, preemies and patients undergoing chemotherapy — cost Medicaid an extra $1.8 million in 2016. Its average cost to Medicaid jumped 290 percent, to $6.70 per unit.

A shortage of potassium phosphates began in 2015 after manufacturer American Regent closed its facility to address quality concerns, according to Erin Fox, who directs the Drug Information Center at the University of Utah and tracks shortages for the American Society of Health-System Pharmacists.

When generics enter a market, competition can drive prices lower initially. But when prices sink, some companies inevitably stop making their drugs.

“One manufacturer is left standing … [so] guess who now has a monopoly?” Salo said. “Guess who can bring prices as far up as they want?”

According to a Food and Drug Administration analysis, drug prices decline to about half of their original price with two generic competitors on the market and to about a third of the original price with five generics available. But if there’s only one generic, a drug’s price drops just 6 percentage points.

The increases paid by Medicaid ultimately fall on taxpayers, who pay for the drugs taken by its 68.9 million beneficiaries. And those costs eat “into states’ ability to pay for other stuff that matters to [every] resident,” said economist Rena Conti, a professor at the University of Chicago who co-authored a National Bureau of Economics paper about generic price hikes in July. The manufacturers’ list prices for the drugs named here also rose in 2016, according to Truven Health Analytics, which means customers outside Medicaid also paid more.

Conti said that about 30 percent of generic drugs had price increases of 100 percent or more the past five years.

Medicaid spending per unit doesn’t include rebates, which drug manufacturers return to states after they pay for the drugs upfront. Such rebates are extremely complicated, but generally start at the federally required 23.1 percent for brand-name drugs, plus supplemental rebates that vary by state, Salo said. Final rebate amounts are considered proprietary, he noted. “All rebates are completely opaque … [it’s] “black-box stuff.”

Fox said drug prices could also jump when a pharmaceutical product changes ownership, gets new packaging or just hasn’t had a price increase in a long time.

Recently named FDA Commissioner Scott Gottlieb has made increasing generic competition a core mission. Plans include publishing lists of off-patent drugs made by one manufacturer and preventing brand-name drugmakers from using anti-competitive tactics to stave off competition.

Doctors, pharmacists and patients don’t always receive warning when a price hike is about to occur, Fox said.

“Sometimes, we will get notices. Other times, it’s like a bad surprise,” she said, adding that the amount of wiggle room for alternatives depends on the drug and the patient.

Following some price hikes, doctors can use fewer units of a drug or switch it out entirely, she said.

Ofloxacin otic, long used to treat swimmer’s ear, became so expensive when generic manufacturers exited the market that doctors started using eye drops in patients’ ears, Fox said.

When old drugs get more expensive, hospitals try to eliminate waste by making smaller infusion bags and keeping really expensive drugs in the pharmacy instead of stocked in readily available shelves and drawers. But that’s not always possible.

“These drugs do have a place in daily therapy. Sometimes they’re life-sustaining and sometimes they’re lifesaving,” said Michael O’Neal, a pharmacist at Vanderbilt University Medical Center. “In this case, you just need to take it on the chin, and you hope one day for competition.”

Methodology Note:

The KHN analysis is based on drugs whose per-unit spending increases drove Medicaid costs up by at least $1 million in 2016. 

We calculated extra expenditures for each drug by first determining how much it would have cost Medicaid to reimburse the number of units purchased in 2016 at the 2015 unit cost. We subtracted this from the actual total cost in 2016. 

The total extra expenditure for a drug includes the sum of the extra expenditures for all its versions (represented by NDC codes), accounting for various strengths, package sizes, routes and labelers. Reimbursement levels vary by state and are typically based on a drug’s list price.

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

Programa contra la tuberculosis en Texas podría reproducirse a nivel nacional

August 08, 2017

Como la mayoría de la gente en Haven for Hope, el mayor refugio para personas sin hogar de San Antonio, Texas, James Harrison no planea quedarse mucho tiempo. “Perdí mi apartamento y no tenía a dónde ir”, explicó.

Pero mientras está aquí, Harrison está aprovechando las pruebas médicas gratuitas que son parte de una investigación sobre la tuberculosis latente.

“La gente ni siquiera piensa en la tuberculosis porque ya no la ves”, dijo Harrison, de 55 años. “No hay nada que te indique que está ahí, hasta que es demasiado tarde”.

Latente vs. activa

La tuberculosis es una infección bacteriana que se disemina por aire, que ataca los pulmones y puede ser mortal. Hay una prueba común de la piel para la tuberculosis, pero el Departamento de Salud de San Antonio dice que la prueba de la piel tarda de 48 a 72 horas en producir un resultado y es susceptible a falsos positivos. Un análisis de sangre es más preciso y requiere sólo 24 horas para obtener resultados.

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Por esta vía se puede descubrir si una persona está portando la bacteria de la tuberculosis sin mostrar síntomas. A este escenario se lo denomina infección tuberculosa latente, una condición que pone a la persona en un riesgo mucho mayor de desarrollar tuberculosis activa, contagiosa si se vuelven a estar expuestos.

“Va a tus pulmones y por lo general se esconde allí inactiva durante años y años. Aunque suena aterrador, es completamente tratable”, dijo la doctora Barbara Taylor, especialista en enfermedades infecciosas que forma parte de un programa llamado Breathe Easy South Texas (BEST). BEST es un ambicioso esfuerzo de $2 millones para hacerles pruebas a personas en riesgo en 20 condados de Texas, un área más grande que algunos estados completos.

El Departamento de Servicios de Salud Estatales de Texas se asoció con el Distrito Sanitario Metropolitano de San Antonio, con UTHealth San Antonio y con University Health System. Ofrecen pruebas en lugares como refugios, clínicas de diabetes y consultorios médicos que tratan especialmente a pacientes de bajos ingresos.

“No es un problema que esté en el lado sur o este. Es un problema en todo el condado de Bexar “, dijo Tommy Camden, gerente de servicios de tuberculosis del Departamento de Salud de San Antonio. Dijo que los casos de tuberculosis afectan tanto a las comunidades urbanas como rurales.

“No importa de qué color seas, o cuánto dinero ganas”, agregó. “Mientras respires, eres susceptible de contraer la tuberculosis”.

Sin embargo, algunas poblaciones están en mayor riesgo de portar la bacteria TB: las personas sin hogar, los consumidores de drogas intravenosas, las personas con diabetes y los nacidos en otros países. Para la mayoría de las personas que resultan positivas, el diagnóstico de tuberculosis latente es una sorpresa. Pero las pruebas son fáciles.

Una tercera parte de la población del planeta está infectada

“Tenemos grandes desafíos por delante”, dijo Camden, porque hay muchísimos casos de tuberculosis latente.

Texas, California, Florida y Nueva York tienen las tasas más altas de tuberculosis del país. Camden dijo que espera que esos estados puedan imitar el programa BEST, que analizó a 3.500 personas el año pasado. Se encontró que aproximadamente del 9% a 10% de ellas tenían tuberculosis latente.

“Es una condición que puede afectarle cuando menos lo espera”, dijo la enfermera Diana Cavazos, de University Health System. Cavazos dijo que a los que dan positivo se les hacen radiografías y un tratamiento de 12 semanas de antibióticos, e incluso se les ofrece transporte gratuito para ir a las citas médicas si lo necesitan.

“Pruebas, suministros, tratamiento, radiografías, todo está completamente cubierto”, explicó Cavazos.

Por el momento, el programa BEST es financiado a través de la exención del Medicaid que tiene Texas del gobierno federal. Pero la financiación futura es un interrogante. Las amenazas en Washington, DC para cortar el Medicaid han sembrado la incertidumbre precisamente en el momento en que el programa de pruebas para tuberculosis está planeando expandirse.

 Esta historia es parte de una alianza que incluye a Texas Public Radio, NPR y Kaiser Health News

S.C. Taps Private Donors To Expand In-Home Services For At-Risk Moms

August 08, 2017

Deona Scott was 24 and in her final semester at Charleston Southern University in South Carolina when she found out she was pregnant. She turned to Medicaid for maternity health coverage and learned about a free program for first-time mothers that could connect her with a nurse to answer questions about pregnancy and caring for her baby.

The nurse would come to her home throughout her pregnancy and for two years after her child’s birth.

“My mouth dropped,” Scott said. “I was like, ‘Thank you, thank you,’ I can’t not take this program.”

Now Scott works full time for that same Nurse-Family Partnership, a local affiliate of a national program. She spreads the word about the program to pregnant teenagers and young women in the state who may be feeling just as scared and unprepared as she did before her son, Phoenix, now 3, was born.

Insuring Your Health

KHN contributing columnist Michelle Andrews writes the series Insuring Your Health, which explores health care coverage and costs.

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This KHN story can be republished for free (details).

Her job is part of a unique private-public initiative that is expected to add 3,200 young women served by the Nurse-Family Partnership program in South Carolina. The expansion was designed in accordance with the nonprofit “pay-for-success” approach, which ties payment for social services to measurable outcomes.

This is the first pay-for-success program to be run statewide.

The expansion of the program is being funded with $30 million from private donors and the federal Medicaid program.

Philanthropists, including the Duke Endowment, the Boeing Co. and the BlueCross BlueShield of South Carolina Foundation, pledged $17 million upfront to allow the Nurse-Family Partnership to expand its services. In addition, the federal Centers for Medicare & Medicaid Services approved a waiver for the project to be reimbursed statewide. This will allow approximately $13 million in Medicaid reimbursements to providers for services over the course of the project, jointly financed by federal and state governments.

That money will seed the expansion of the Nurse-Family Partnership. Then the state will make up to a $7.5 million “success payment” to keep the program going in years four and five, but only if the partnership achieves specified results.

The outcomes to be measured include reducing the number of preterm births, child hospitalizations and emergency department visits because of injuries. Also, the program will need to show an increase in the spacing between births and the number of moms served who live in high-poverty areas.  Before the project launched early in 2016, the partnership served about 1,000 first-time mothers.

In South Carolina, more than a quarter of children live in poverty, and a majority of babies are born to low-income mothers who qualify for Medicaid.

The expansion will allow the partnership to zero in on pregnant teenagers and young women with less formal education at higher risk for complications, said Chris Bishop, executive director of the Nurse-Family Partnership in South Carolina.

“It’s a massive investment to help us grow and to serve more families, and to innovate,” Bishop said. For example, the program is trying telehealth visits “to keep moms engaged and stay in touch, and keep them in the program while they go off and become great moms.”

Having someone like Scott doing grass-roots outreach is a new strategy, too, Bishop said, noting that his organization traditionally relied on referrals from other groups.

The Nurse-Family Partnership is a national program that has been operating for more than 30 years. During that time, dozens of studies and clinical trials have found it improves pregnancy outcomes, reduces the likelihood of child abuse and neglect and enhances school readiness, among other things.

Scott said that until she started talking with Lindsay Odell, her nurse, for example, she had no plans to breast-feed her baby. “I thought that was old-school,” she said, but Odell’s advice helped change her mind.

She also credits Odell with helping her organize child care and other details so she could complete her bachelor’s degree in kinesiology. She graduated at the end of 2015. Scott is now married and is five months pregnant with her second child.

The Nurse-Family Partnership and other similar organizations receive funding through the federal Maternal, Infant and Early Childhood Home Visiting program, for at-risk pregnant women and families. Congress bundled its nearly $400 million in funding with the Children’s Health Insurance Program appropriation two years ago, but that money will dry up on Sept. 30. Traditionally a bipartisan program, Congress is expected to reauthorize the program, and home-visiting advocates are requesting an increase to $800 million over five years.

Efforts like South Carolina’s pay-for-success project can play an important role in expanding services, said Karen Howard, vice president of early childhood policy at First Focus, an advocacy group.

“Many of the programs in the states are relatively small programs and because of funding can’t always go deep and saturate the community,” she said.

Continued federal funding is key. “What we really want is secure and dedicated funding,” Howard said. “We need to serve more families.”

Update: This story was updated on Aug. 8, 2017, to make clear that the $13 million in Medicaid financing will come from both the federal and state governments.

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Drug Puts A $750,000 ‘Price Tag On Life’

August 02, 2017

Jana Gundy and Amanda Chaffin live within two hours of each other in Oklahoma. Each has a child with the same devastating disease, one that robs them of muscle strength, affecting their ability to sit, stand or even breathe.

So both families were ecstatic when the Food and Drug Administration approved the first treatment for the genetic condition — known as spinal muscular atrophy (SMA) — two days before Christmas 2016. It seemed the gift they had been waiting for — a chance to slow the heartbreaking decline of their young sons.

But that common hope has taken them down different paths: In April, Gundy’s child, who is on private insurance, began getting the drug Spinraza, which costs $750,000 for the initial year of treatment. Chaffin’s child — a Medicaid enrollee — was not receiving the drug, as his state regulators debated whether to offer it to children like him who use ventilators to breathe.

This KHN story also ran on NPR. It can be republished for free (details).

Across the country, similar stories are playing out as private insurers and already-squeezed state Medicaid programs wrestle with what, if any, limits to place on patients’ access to break-the-bank drugs, weighing the needs of the ill against budget realities.

At the same time, policymakers and physicians increasingly demand to understand why drug manufacturers affix price tags that have risen to once unimaginable levels.

“It looks like a drug that works for a tragic condition that afflicts children and cripples and kills them. That’s the good news,” Jerry Avorn, a professor at Harvard Medical School, said of Spinraza. But “how in the world did the price of $750,000 a year get chosen?”

Biogen, the maker of Spinraza, defends its price. “We compared industry norms for other drugs in rare disease. We looked at the efficacy and safety profile of the drug itself,” said Wildon Farwell, senior medical director of clinical development at Biogen, which covers the cost of the drug for patients who are denied by their insurers.

Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is a genetic disease that affects the motor nerve cells in the spinal cord.

It results from a mutation in the survival of motor neuron gene 1, which is the gene that enables the function of nerves to control muscles. The mutation leads to debilitating and often fatal muscle weakness.

  • — SMA affects 1 in 6,000 to 10,000 people.
  • — Sixty percent of SMA patients have the most serious form, Type 1, which is often fatal. Patients with this type are usually diagnosed before they reach 6 months of age.
  • — Type 2, which is less severe but generally means a patient will never walk, is diagnosed in late infancy or toddlerhood.
  • — Two other types, 3 and 4, have an onset in childhood or older ages

Sources: National Library of Medicine’s Genetics Home Reference; Cure SMA

But that logic — comparing a new drug to extremely high-priced drugs already on the market — has only fueled an inflationary cycle, Avorn said, adding: “In my view, that’s akin to a kid who gets caught bullying another kid and beating him up after school, and says, ‘Well, all the other kids were beating him up so it’s OK.’ If it’s wrong, it’s wrong.”

The stress is unbearable for families trying to obtain treatment for sick children — caught in the arcane world of coverage decisions and businesses’ price calculations.

“The longer we wait, the more … [his ability to move] will be gone and there’s a chance of not getting it back,” said Chaffin of Kayden, her 4-year-old son, who was diagnosed with SMA as an infant.

In late May, Oklahoma’s Medicaid program approved rules barring coverage of Spinraza for patients dependent on ventilators.

At the same time, Gundy watched hopefully as her 12-year-old son, Kyle, who also uses a ventilator, received the first three of the six doses he will get this year, following approval by his private health insurer. Said Gundy, “We’ve seen some minor muscle movement return.”

Spinraza isn’t a cure for SMA, which affects 10,000 people in the U.S., but clinical tests show it holds promise for some. Scientific discoveries by researchers at the University of Massachusetts Medical School in the early 2000 — partly funded by grants from the National Institutes of Health and donations from patient-advocacy groups — helped pave the way for Spinraza.

The drug was granted “orphan” status, which provides tax credits for research and helped speed the review process. It won approval in five years after the start of clinical trials, based on results of a few small studies. The FDA cited interim results from one of those studies in giving its OK in which 40 percent of the patients given the drug showed improvement, compared with none in the control group. Final results came later, showing 51 percent of treated children demonstrated improvement. It was tested only on children, most under age 2, though it was approved for pediatric and adult use.

All that means Biogen’s research and development costs likely were not unusually high, although the company would not release figures. Five days after getting the FDA’s approval to sell the drug in the U.S., Biogen announced the price: $125,000 a dose, or $750,000 for the first year. Fewer doses in following years drop the total annual cost to $375,000. The drug must be taken for life.

The FDA does not know or consider pricing when it grants approval.

If just half of U.S. patients get treatment for one year, the tab would be more than $3.7 billion. Spinraza brought in $203 million in the second quarter of this year, more than four times its revenue in the first quarter.

Amanda Chaffin comforts son Kayden, 4, who has a genetic condition called spinal muscular atrophy, or SMA, and depends on a ventilator to breathe. (Nick Oxford for KHN)

When Biogen unveiled the price tag, one Wall Street analyst at Leerink predicted “a storm of criticism” and that insurers would parse “which patients receive access.”

Families that include a child with SMA are a close community, and Chaffin keeps in touch with other SMA families via Facebook, where the have-nots can watch what happens with the kids who received the drug.

“There are similar kids his age that live in different states and are [on a ventilator] and they are seeing movement come back and strength coming back,” said Chaffin. Because SMA often affects the muscles around the mouth, “Kayden lost his smile in 2014, but he has a little smirk left. These parents are seeing their smiles coming back.”

Good news came in late July: After receiving the required two denials from her state’s Medicaid program, Kayden was accepted into Biogen’s patient-assistance program, which covers the cost of the drug. The program helps patients’ families navigate their insurance, covers the cost of the drug if they are denied and, in some cases, helps with other costs, too. In the second quarter of this year, about 20 percent of Spinraza doses were provided free in the U.S, according to a company spokeswoman.

But it isn’t available to everyone: Some government programs — Medicare and Medicaid, for example — restrict efforts to eliminate copayments for drugs.

Kayden will get his first injection in mid-August — eight months after the drug was approved. Now his low-income family has one more hurdle: finding the estimated $2,000 per injection to cover doctor and hospital costs for the six shots Kayden will need in the coming year.

Aside from the financial questions, there are other unanswered concerns among families and medical professionals.

Will Spinraza work in older children or adults? No children involved in the study were on ventilators at the start of the trial. Is it safe for children on a ventilator? Also, because SMA’s rate of decline varies, how can doctors, families or insurers measure if the drug is stalling the disease’s progression? And, finally, how long will its effect last?

For some fast-track drugs, like Spinraza, FDA approvals don’t offer this kind of guidance.

Dr. Susan Apkon, who treats dozens of children with SMA at Seattle Children’s Hospital and who urged Washington state’s Medicaid pharmacy board to cover it, said there is no easy answer.

“If a drug works, we want to give it to the child or adult, whatever the drug is,” said Apkon, who does not receive money directly from Biogen but is a co-investigator in one of the company’s ongoing studies.

Still, she acknowledges, “there is one pot of money, and we need to figure out how it gets distributed,” she said. “The system is broken.”

With any costly new drug, it all comes down to “tough choices,” said Jack Hoadley, a researcher at Georgetown University’s Health Policy Institute. “Treating one of these patients may mean not treating 1,000 patients with some other, less expensive problem — or saying they have to raise more tax dollars,” he said. “Private insurers have the same trade-off. Do we pay for this if it will ultimately raise our premiums?”

Coverage eligibility varies by insurer and, in Medicaid, by state.

UnitedHealth and Aetna authorize the drug for a range of SMA types. UnitedHealth’s policy doesn’t cover patients on ventilators. Anthem covers patients with the most serious forms of SMA, Types 1 and 2, while Humana authorizes the drug for patients with Type 1 who were diagnosed before 6 months of age.

Most insurers and Medicaid programs require that patients show some kind of proof of progress — or at least maintenance of function — in order to continue therapy beyond initial doses.

While agreeing that the drug offers some hope to patients, the price tag rankles Donna Sullivan, chief pharmacy officer for Washington State Health Care Authority, which oversees Medicaid.

During a recent meeting with Biogen officials, Sullivan was blunt: “I told them the price was unethical.”

Denial, Appeal, Approval … An Adult’s Thorny Path To Spinraza Coverage

The FDA granted approval for Spinraza in late December for use on children and adults with spinal muscular atrophy. Insurance coverage is mostly focused on infants and children.

In her state, there are about 150 children with SMA. After reviewing the data on Spinraza, Washington Medicaid approved broad coverage rules, including allowing patients on ventilators to get the drug. Large new spending outlays put additional pressure on state budgets, which, especially if combined with economic downturns, can lead lawmakers to trim medical provider payments or optional Medicaid services, which include adult dental care, podiatry, chiropractic treatment and other services.

Crystal Ramos, of Pasco, Wash., whose 3-year-old twins have SMA, is thankful that Medicaid covers the drug. After four doses, she is already seeing some improvement in her boys, Harper and Hendrix.

It’s the little things. Hendrix, who was never able to walk, now has enough strength to cough and expel mucus. That’s important because it could help prevent pneumonia. Harper — the stronger of the two — looks as if he might be able to crawl.

The boys are on her insurance through her job as a teacher, but Medicaid picks up what her private insurance does not, which totals about $2,500 per injection.

She calls Spinraza’s price “beyond crazy.”

“They’re putting a price tag on life, which sucks,” she said. “In the end, we have to pay it if we want our kids to live, and they know it.”

Clarification: This story was updated to add more information about the data analysis the Food and Drug Administration used in approving Spinraza. 

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

Counting On Medicaid To Avoid Life In A Nursing Home? That’s Now Up To Congress.

July 31, 2017

Ten years ago, a driver ran a stop sign as Jim McIlroy rode into the intersection on his motorcycle. Serious injuries left McIlroy paralyzed from the chest down. But, after spending some time in a nursing home, he returned to his home near Bethel, Maine.

McIlroy does most of his own cooking since Maine’s Medicaid program paid for a stovetop that he can roll his wheelchair underneath to reach the food-prep area. His new kitchen sink has the same feature. Wheelchair-friendly wood flooring has replaced McIlroy’s wall-to-wall carpeting.

The alterations plus a personal care aide — all paid for by Medicaid — enable McIlroy to stay in his house that he and his wife, who has since died, “worked really hard to own,” he said. The arrangement also saves Medicaid roughly two-thirds of what it would cost if he lived in a nursing home.

This KHN story also ran in USA Today. It can be republished for free (details).

McIlroy depends on the federal-state program’s growing support of home-based care services — along with 2 million elderly or disabled Americans who rely on them to live at home for as long as possible.

However, that crucial help could face severe cuts if congressional Republicans eventually succeed in their push to sharply reduce federal Medicaid funds to states.

States can choose whether to offer Medicaid services at home, but nursing home coverage, which is more expensive, is a required benefit. Optional benefits like home services would likely be first to go if states face budget troubles, the Center on Budget and Policy Priorities (CBPP) warned in an analysis in May.

Esther Ellis holds an emergency call button she wears as a pendant around her neck provided by Partners in Care, a Medicaid-funded home-care service that helps her live at home and avoid nursing home care. “If it wasn’t for them, I don’t know what I would do,” she says. (Heidi de Marco/KHN)

Children with special health needs, older adults and people with disabilities greatly value home- and community-based assistance, said Sen. Susan Collins (R-Maine), who chairs the Senate Select Committee on Aging.

“That’s why I am deeply concerned with proposals that would significantly cut Medicaid, forcing governors and state legislators to confront difficult budget choices, including how to maintain these critical, but optional, services,” said Collins, one of three Republicans whose votes early Friday helped defeat the Senate’s “skinny repeal” measure that would have scuttled the Affordable Care Act.

While home services are not a required part of Medicaid, they represent a large share of Medicaid spending. Medicaid expenses for long-term care consumed a third of the Medicaid budget nationwide in 2015, and more than half of that amount went to optional home-based care, according to a government report. Nursing homes got the rest.

Jim McIlroy, 73, grows cucumbers, peppers and tomatoes on the deck of his house. Ten years ago, a driver hit him as he rode his motorcycle, leaving McIlroy paralyzed from the chest down. (Courtesy of Judy Gould)

“Staying at home is so incredibly important,” said McIlroy, 73, who grows cucumbers, peppers and tomatoes on the deck of his house. “You can do what you want to do when you want to do it, and you don’t have to share a room with somebody else and have your meals brought to you.”

Yet demand for home-based services is outpacing supply. In Maryland, more than 20,000 people were on a registry awaiting openings for Medicaid home-based services last month. About 160,000 older or disabled people across the country were waiting for home services in 2015, according to a Kaiser Family Foundation report last year. (Kaiser Health News is an editorially independent program of the foundation.)

Esther Ellis, who lives outside Los Angeles, received a new mattress this year from Partners in Care Foundation, a nonprofit that runs four of the 38 sites in California’s Multipurpose Senior Service Program and provides Medicaid-funded home services.

The mattress helps relieve her back problems after surgery. Partners also provided a couch, a microwave and an emergency call button to summon help that she wears as a pendant around her neck.

“If it wasn’t for them, I don’t know what I would do,” said Ellis, 79.

Home-based Medicaid benefits and eligibility vary by state and can include:


Home health and personal care aides, a visiting nurse, psychotherapy, automatic medication dispensers, pest control services


  • Emergency call buttons, motion detectors that alert emergency responders
  • Kitchen, dining:

    • Microwave ovens, air conditioners, food processors, stabilizing forks and spoons for people with hand tremors, automatic shut-off devices for electric stoves
    • Home modifications: 

      • Ramps, stair lifts and widened doorways for wheelchair access, bathroom grab bars, automatic door openers for walk-in showers
      • Outdoors:

        • Snow removal

Advocates argue that home-based services can make a big difference for health. “It’s all well and good to discharge people from the hospital with a list of medications to take,” said Camille Dobson, deputy executive director of the National Association of States United for Aging and Disabilities, which represents state departments of aging. “But if they go home to a refrigerator that doesn’t work so that they can’t store their medications or have no way to get to their appointments, all of that great medical intervention goes for naught.”

Medicaid home services usually include a visiting nurse or nurse practitioner, a home health aide or someone to help with dressing, eating and other daily activities, light housekeeping and transportation to doctor’s appointments. But that’s just the beginning.

The programs also pay for home modifications, which include minor renovations such as grab bars in the bathroom to prevent falls and wider door frames to accommodate wheelchairs. To overcome potentially treacherous stairs, states may provide wheelchair ramps and some — including California and Ohio — will install a stair glider or chairlift.

Carolyn Gilliland, 81, has lived in her home in central Ohio’s farm country since she was 4. She receives home-based services to help with chronic health problems through a Medicaid managed-care plan called MyCare Ohio. It provides two weekly visits from a nurse, a personal care aide and a chairlift to reach her second-floor bedroom. Until it was installed in April, she couldn’t go upstairs.

“It relieves the stress on my knees,” she said.

Home health services, plus any appliances, electronics and other items, must be medically necessary and part of an individual care plan. Recipients must receive Medicaid, and in most cases must be sick enough to qualify for nursing home care.

Among them is Cynthia Dutil, 60, who lives near Waterville, Maine. Because she has cerebral palsy, she depends on a personal care aide for help with dressing and other daily activities. Maine’s home-based services program also provided a small food processor to puree her foods, a large-print keyboard for her computer and a two-sided toothbrush.

Dutil said she’s living life on her terms. She began to explain why she prefers that to living in a nursing home, but stopped midsentence. “How much time do you have?”

For more information about Medicaid home-based services, go to or call 1-800-677-1116.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and its coverage of aging and long-term care issues is supported by The SCAN Foundation.

How To Get Long-Term Care At Home Without Busting The Bank

July 27, 2017

The vast majority of older adults receive long-term care at home, not in nursing homes. But few people plan for this expense.

Nor do they see long-term care insurance as a viable option — because it’s expensive and is often seen as protection against the cost of nursing home care.

That should change, some experts contend. If the long-term care insurance industry focused more on helping people cover home-based services, they argue, policies would be more affordable, and potentially appealing.

“Long-term care, for most people, is a home care problem,” said Bill Comfort, who owns Comfort Long Term Care, a brokerage based in St. Louis and Durham, N.C.

“It makes sense to insure people for the likelihood of where care is going to be needed first — which is at home,” agreed Deb Newman, president of Newman Long Term Care in Richfield, Minn., outside Minneapolis.

Genworth, one of the nation’s leading long-term care insurers, acknowledged that this position is supported by industry claims data.


Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America’s 45 million seniors and their families navigate the health care system.

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For more KHN coverage of aging, click here.

“Primarily, we are seeing people utilizing home care and a smaller and smaller percentage using nursing home care,” said Beth Ludden, Genworth’s senior vice president for long-term care insurance products.

“People think, ‘While I might start out needing care at home, eventually I’ll need to be in a facility,’” Ludden continued. “But that’s not something we see in our data. For the most part, people are able to stay at home for the whole time.”

Currently, more than 6 million older Americans are thought to have a “high need” for long-term care, according to a report from the U.S. Department of Health and Human Services. That’s defined as requiring daily assistance with two activities (eating, bathing, toileting, dressing, continence or transferring from a bed to a chair) that lasts at least 90 days or a need for substantial assistance due to severe cognitive impairment.

About 52 percent of adults reaching age 65 today will need these services — 26 percent for two years or less; 12 percent for two to four years; and 14 percent for more than five years, the HHS report projected.

Yet fewer than 10 percent of older adults have purchased long-term care insurance, which has declined in popularity as premiums skyrocketed and insurers exited the market over the past decade. Whether the industry can fix its major problem — affordability — remains to be seen.

From a consumer’s perspective, if your goal is covering several years of home-based care, not nursing home care, you can purchase a less expensive policy without all the bells and whistles that drive up costs, Newman suggested.

A 55-year-old couple buying a policy of this kind — say, $4,000 a month in benefits for each person, for a maxiumum of three years, with a 1 percent compounded annual inflation protection provision — from Mutual of Omaha would pay $2,380.05 a year in premiums, according to a quote from Minnesota that her firm provided. It’s common for policyholders to pay premiums for 10 or 20 years before claiming benefits. Terms are similar in many other states.

How much help in the home might this policy provide?

According to 2016 data compiled by Genworth, the average annual cost for care provided by a home health aide was $46,332, compared with $82,128 for a semiprivate room in a nursing home. That translates into $3,861 a month, for 44 hours of home care a week — the equivalent of slightly more than six hours of care, seven days a week.

That might not be enough for seniors with serious, disabling illnesses, but it can provide much-needed relief to unpaid family caregivers who could otherwise be on call nonstop.

What happens if someone ends up needing nursing home care?

You might consider what’s known as a “qualified long-term care partnership policy” — a plan available in every state except Alaska, Hawaii, Illinois (where a program has been approved but policies aren’t available yet), Massachusetts, Mississippi, New Mexico, Vermont and Washington, D.C. (The Mutual of Omaha quote above is for a partnership policy.)

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These little-known insurance products are designed to help consumers preserve their assets if they become seriously ill, need nursing home care and seek to become eligible for Medicaid, which pays for nearly half of nursing home costs in the U.S.

To qualify for Medicaid, most states require that an individual have no more than $2,000 in assets; couples are allowed to have up to about $120,000, so that a well spouse doesn’t become impoverished. With a partnership policy, every dollar received in long-term care benefits is exempted from Medicaid’s asset test and protected from seizure by the state.

In other words, if you get $200,000 in benefits from a partnership policy and your state has an asset limit of $2,000 for Medicaid, you can keep $200,000 in assets plus the $2,000 allowed and still meet your state’s asset test, said Scott Olson, co-founder of the, a brokerage based in Camano Island, Wash.

He noted that partnership policies don’t guarantee Medicaid eligibility and you’ll still have to meet whatever income standards your state sets for Medicaid. (Many, but not all states, allow people to “spend down” to qualify, using their income to pay for institutional care.)

Bill Nickerson, 63, of Las Vegas, one of Olson’s clients, purchased a partnership policy three years ago because it lets him “retain control of my financial assets, even if I have to be cared for.” Another plus: The policy “permits me, if I decide to stay home, to take a certain amount of the monthly amount and give it to someone who I choose to provide care for me, even if that person is a family member.”

There’s no reliable national data about how many people with partnership policies end up going on Medicaid to cover nursing home care. Nor is there good data about the number of these policies that have been sold or the benefits paid out to date.

David Guttchen, who directs the Connecticut Partnership for Long-Term Care, the first such program in the country, is skeptical about policies with benefits that will cover only a portion of expected costs. (Four states, including Connecticut, were the first to launch partnership programs and have special rules.)

“You absolutely need to know what the average home care and nursing home costs are for your state, to get a sense of what your exposure might be,” he said. “If you don’t buy meaningful benefits, you’re wasting your premium.”

If you’ve been able to cover a good amount of home care but your policy won’t cover nursing home care, you’ve gained some protection, for a while, but you could still pay an enormous amount out-of-pocket going forward, if Medicaid isn’t an option.

It’s a gamble because people can’t be sure what kind of care they’ll need in the future, or for how long, or what the future of Medicaid will look like, said Michael McDonnell, an insurance broker in Petaluma, Calif. Before buying any policy, consult with an elder law attorney or independent financial adviser, he recommended.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and coverage of aging and long-term care issues is supported by The SCAN Foundation.

Who Knew Senate Health Bill Debate Could Be So Complicated?

July 25, 2017

So the Senate has voted to start debate on a bill to replace the Affordable Care Act. Now what?

Well, it gets wonky.

The rules for budget reconciliation, the process the Senate is using that limits debate and allows a bill to pass with only a simple majority, comes with a set of very specific rules. Here are some of the big ones that could shape whatever final bill emerges:

Matters Of Timing

Unlike most other Senate bills, where deliberation can last for days or weeks, budget reconciliation rules limit debate to 20 hours. While that 20-hour clock starts running as soon as the Senate votes to proceed to the bill, the debate can be paused. In other words, the Senate can recess for the night, then come back the next day and the clock would resume where it left off the day before. The 20 hours does not include time spent voting on amendments.

Near the end of the debate, Senate leaders could offer a substitute bill. It may incorporate some of the earlier amendments or not, and it is likely geared to attracting as many votes as possible.

Use Our ContentThis KHN story can be republished for free (details).

At the end of the 20 hours, there is potentially unlimited time for senators to vote on (but not debate) amendments. By tradition, the minority and majority party each gets one or two minutes to announce what the amendment is, and why it is good or bad. Unlike the initial debate, the clock does not pause for what is referred to as the “vote-a-rama.” That means voting goes only until members get too tired to continue. Vote-a-ramas in the past have often stretched for more than 12 hours, but rarely longer than 24.


Senate leaders have for the past several weeks talked about starting debate and having an “open amendment process.” But under reconciliation, amendments are more constrained than under almost any other Senate rules.

According a report by the Congressional Research Service (a nonpartisan research group that provides background briefs to Congress), the Budget Act, which sets the reconciliation rules, “requires that all amendments be germane to the provisions in the bill.” What does that mean? Says CRS, “amendments cannot be used to introduce new subjects or expand the scope of the bill.”

Amendments also cannot add to the budget deficit or cause the bill to miss its overall budget targets.

The Budget Act’s rules for amendments can be waived — but it takes a 60-vote majority to do that. (Republicans currently have 52 votes and Democrats have been unified in opposition.) That’s what happened Tuesday night when Senate Republican leaders offered up language that had not been scored by the Congressional Budget Office.

Budget Targets

Reconciliation is designed to be a process to address the federal budget and is governed by the details set in a budget resolution passed by Congress. Even though congressional leaders have often used it to move legislation that has broader intent, the process has strict rules about spending or saving federal dollars. This year’s targets are modest by most budget resolution standards — each of the two health committees in the Senate were instructed to save $1 billion over 10 years.

But the Senate committees did not take up the bill to make changes or meet those targets on their own. As a result, the Senate is working from the bill passed by the House in May. It saved $133 billion, according to the CBO. Although the Senate is certain to make major revisions to the House legislation, any bill it passes must produce at least that much in savings.

And, of course, if the Senate passes a bill, it would have to be approved by the House or the House and Senate would have to work out differences and then pass that bill.

Byrd Rule

Both the underlying ACA replacement bill and its amendments must comply with the “Byrd Rule,” named for former Sen. Robert Byrd (D-W.Va.), which prohibits language that is “extraneous” to the federal budget from being included in the bill. In practice that means language must add to or subtract from federal spending and that the spending must not be “merely incidental” to a broader policy purpose.

Those determinations are made by the Senate parliamentarian. Last Friday, Senate Democrats released a list of initial decisions made by the parliamentarian’s office that found about 10 parts of the Senate- and House-passed health bills run afoul of the Byrd Rule. That list included a temporary defunding of Planned Parenthood and requirements that people with breaks in coverage wait six months before buying individual health insurance.

Republican leaders say they are working to rewrite the problematic provisions. Whether that will pass the Byrd Rule is one of many things no one knows yet in this very tumultuous debate.

Update: This story has been updated to clarify the amount of House budget savings the Senate bill would need to match and to further explain the Budget Act’s rules for amendments. 

Senators Grill Top Indian Health Officials About Trump Budget

July 12, 2017

Leaders of the Indian Health Service struggled Wednesday at a Senate hearing to defend the Trump administration’s plans to slash funding to the agency, which is reeling from quality of care problems at several of its hospitals, a doctor shortage and facilities showing their age.

The lack of answers infuriated both Democrats and Republicans on the Appropriations subcommittee.

“I cannot believe what has transpired today. All I want is some damn answers, that’s it,” said Sen. Jon Tester (D-Mont.), as he admonished Rear Adm. Michael Weahkee, the Indian Health Service’s acting director since June.

When Weahkee refused to say how staffing levels would be affected under the Trump administration’s proposed 2018 budget, Tester became visibly shaken and yelled back: “I did not come in here with my hair on fire but I am leaving here with it. … It’s no wonder [the agency is] in crisis.”

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The administration officials could not answer some basic questions from senators, including how much money the agency has gained from the health law’s Medicaid expansion and whether President Donald Trump’s budget proposal would help the agency to hire more staff.

The Indian Health Service, which oversees care to 2.2 million American Indians and Alaska Natives, has been chronically underfunded, and several of its hospitals have lost accreditation or been put under special watch by Medicare because of conditions that harmed patients. It has a 30 percent vacancy rate for doctors, dentists and physician assistants.

In 2013, Indian Health Service spending for patient health services was $2,849 a person, compared with $7,717 for per capita health care spending nationally, according to a report from the National Congress of American Indians. Despite less funding, Native Americans typically have higher incidences of serious health problems than the general public, including higher rates of diabetes, liver disease and unintentional injuries.

Trump’s budget includes $4.7 billion for the agency. Sen. Lisa Murkowski (R-Alaska), who chairs the Subcommittee on Interior, Environment and Related Agencies, which held the hearing, said that would amount to a 6 percent cut from the current funds. She noted the trim was well below other Department of Health and Human Services agencies, where proposed funding is reduced by an average of 18 percent.

Yet she said she was stunned to hear IHS officials at the hearing say the Trump budget has enough money to improve care.

“You have not answered my question on whether we have provided you sufficient resources,” Murkowski told Weahkee. “I can’t stand down knowing our system is failing so many Native Americans around the country.”

Weahkee, a member of the Zuni tribe, was previously CEO of the IHS’ largest hospital in Phoenix. He said the proposed budget prioritizes funding on patient care, while it cuts funding to modernize and build facilities. He said the agency’s appropriations are augmented by payments from Medicare and Medicaid. Medicaid provided $880 million in funding in 2016 — more than any other third-party funding source, according to a report released Wednesday by Center on Budget and Policy Priorities.

Murkowski said she is worried about the effects on the Indian health care system if Congress were to accept a Republican health plan to replace the Affordable Care Act. The current version being advanced by Senate leaders would end the ACA’s Medicaid expansion and cap future Medicaid funding to states.

Alaska was one of 31 states to expand Medicaid under the Affordable Care Act, and Murkowski has said she has serious qualms about the current plan.

Senate GOP leadership delayed the bill when it failed to get enough support before the July Fourth recess. A new version of the legislation is expected to be released Thursday.

Operating in some of the nation’s poorest places, the Indian Health Service has failed to meet minimum federal standards for medical facilities, turned away gravely ill patients and caused unnecessary deaths, The Wall Street Journal reported last week, citing federal regulators, agency documents and interviews.

Murkowski said she was dismayed by the agency’s recent track record, particularly after she helped steer an extra $29 million in this year’s budget to address quality of care problems at three of its hospitals in the Midwest.

“I believe the agency is sincere in its desire to fix these problems,” she said, “but a year later­ these problems remain and appear to more serious than ever.”