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Updated: 21 hours 20 min ago

Study Gives Mixed Reviews On Laws To Equalize Cancer Patients’ Out-Of-Pocket Costs

November 10, 2017

Laws designed to equalize out-of-pocket costs faced by cancer patients undergoing chemotherapy — whether treated intravenously, with pills or liquid doses — are having mixed results, according to new research.

The study, published online this week by JAMA Oncology, found these so-called state “parity” laws have not uniformly reduced patients’ out-of-pocket spending.

The laws became popular in the past decade as pricey anti-cancer oral medications grew more common. They were intended to address the variation in what insurers expected patients to pay, depending on the form of chemo they received.

In many plans, oral anti-cancer drugs were placed in high cost-sharing tiers in patients’ prescription coverage. Drug infusions — which took place at a doctor’s office — were handled as an office visit and sometimes required minimal copayments.

The researchers analyzed health plan claims of 63,780 adult cancer patients younger than age 65. All lived in the 43 states and the District of Columbia that passed parity laws from 2008 to 2012.

Insuring Your Health

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

To contact Michelle with a question or comment, click here.

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

They compared the use of oral anti-cancer medicines and out-of-pocket spending between patients in two types of health plans: state-regulated plans and “self-funded” employer health plans. The employer plans pay workers’ claims directly and therefore are not subject to state parity laws. Just under half of the patients involved in the study had coverage through a self-funded plan.

They came to various conclusions.

First, “these laws have not consistently reduced out-of-pocket spending for orally administered anticancer medications,” they wrote. More broadly, they noted, while these parity laws offered many patients “modestly improved financial protection,” the laws alone “may be insufficient to ensure that patients are protected from high out-of-pocket medication costs.”

And the researchers were surprised and concerned by these findings.

“When you think about who would have been the target of the law, parity is intended to help people afford the cost of their treatment,” said Stacie Dusetzina, an assistant professor of pharmacy and public health at the University of North Carolina-Chapel Hill, who was the study’s lead author. “The most expensive fills got more expensive after parity. That’s concerning.”

Among their specific findings:

  • The number of prescriptions requiring high out-of-pocket spending grew, despite parity laws. The proportion of prescriptions filled in plans subject to parity that cost more than $100 out-of-pocket per month increased from 8.4 to 11.1 percent, the study found. That figure declined slightly for prescriptions in plans that weren’t subject to parity, from 12 to 11.7 percent.
  • In plans subject to parity laws, the proportion of prescription fills for orally administered therapy without copayment increased from 15 to 53 percent, more than double the increase in plans not subject to parity. Those plans increased from 12 to 18 percent.
  • Parity laws did not increase six-month total spending for users of any anti-cancer therapy or for users of oral anti-cancer therapy alone.

The researchers suggested that continuing growth in high-deductible plans and high coinsurance charges may have contributed to the rise in the number of patients with high out-of-pocket costs for cancer treatment, even in states that have parity laws.

The study also found that out-of-pocket spending on infused drugs, which are typically older and less expensive than oral anti-cancer therapies, remained stable during the study period and was unaffected by parity laws.

A federal law that would extend parity to the seven states that don’t have it has been proposed in the past, most recently in March. Such a law could also benefit people in self-funded plans that aren’t subject to state laws, as well as Medicare beneficiaries.

“A federal law would potentially provide a lot of benefit, because we do feel parity has a net benefit for patients,” Dusetzina said.

Update: This story was updated at 5:40 p.m. ET. 

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

Ohio’s Drug-Pricing Ballot Question Triggers Voter Confusion

November 07, 2017

COLUMBUS, Ohio — Lawmakers in the nation’s capital have yet to grapple with rising drug costs, but Ohio voters are being asked — in a single ballot-box question next week — to figure out how best to lower the tab the state pays for prescriptions.

The Drug Price Relief Act, better known as Ohio Issue 2, has been promoted and pilloried in a dizzying crush of robocalls, TV and radio ads, and direct mailings.

Opponents say it is impossible to implement, could limit patients’ access to medicines and would not necessarily save money. Proponents are selling the initiative as a rebellion that could save millions of dollars in an era of health care anxiety.

And, as Election Day approaches, voters say it’s difficult to make sense of it all.

Sean Hundley, a 30-year-old Medicaid beneficiary who works at a coffee shop in Columbus’ trendy Short North neighborhood, said he has seen plenty of advertising from both sides, but he can’t figure out who is telling the truth.

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

“Everything they say, not knowing who to trust — it would just lead me not to cast a vote,” he said.

This reaction highlights one of the difficulties of tasking voters with sorting out such a complex issue. But what they decide will likely have implications well beyond the state’s borders.

In the absence of federal action, states have begun taking legislative steps to address the toll of rising drug costs on their budgets — a trend that raises concerns among pharmaceutical companies.

If Issue 2 passes, this ballot-question strategy may also gain momentum. Advocates in South Dakota and the District of Columbia are already pushing for such a drug pricing initiative in the November 2018 election.

But California voters rejected a similar measure last year, noted Jane Horvath, a senior policy fellow at the National Academy for State Health Policy. A second failure could have a chilling effect on the idea of using the ballot to push drug-pricing reform, she added.

That’s part of the reason why this ballot-question campaign has drawn attention and contributions from outside the state. Supporters have raised more than $14 million, with most of that money coming from the California-based AIDS Healthcare Foundation. Opponents, bankrolled by the pharmaceutical industry, have raised $58 million.

But during a recent water aerobics class at a suburban Cincinnati gym, participants — mostly women who said they were reading daily newspaper coverage and watching local news to figure out how to vote on the ballot initiative — said they were fed up with all of the campaign noise.

The exercisers — fit, mostly retirees bouncing up and down in the water — even peppered a reporter with questions: Do you understand it? Can you explain it to me?

If enacted, Issue 2 would prohibit state programs, such as Medicaid and state employee health plans, from paying more for a medication than does the federal Veterans Health Administration. The Department of Veterans Affairs receives heavily reduced prices for prescription drugs.

But analysts are divided over whether this would work, or what amount of relief it could provide to the state budget.

An analysis by the nonpartisan Ohio Office of Budget and Management said it’s unclear whether the change would actually save any money and, if so, how much.

Supporters, who include Vermont Sen. Bernie Sanders and Ohio’s former Republican Party chairman, counter that their calculations indicate savings of about $400 million — and that, they say, is why drug companies have spent so much fighting the initiative.

“Our opponents say it’s unworkable or — they’ve created a word — ‘unimplementable.’ We believe it will work,” said Dennis Willard, a spokesman for the Yes on 2 campaign.

Meanwhile, critics worry Issue 2 would be nearly impossible to enforce.

For one thing, the VA’s final discounts are deemed proprietary and kept secret. For another, it’s unclear which state agencies would be included under the initiative.

In addition, the state’s Medicaid program already receives discounts from drug companies. Unlike the VA, though, federal law requires it to cover the vast majority of drugs, making price negotiation more difficult.

“You can’t get the VA prices if you don’t do VA things,” said Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh. “To just say, ‘We’re not going to pay more than the VA’ is difficult.”

But those are nuances that are tough to explain in a radio spot, or on a mailed flyer. And that means the dueling media blitz is leaving many Ohio voters at a loss.

Take Barbara Herr, a 64-year-old paralegal. She’s a lifelong Democrat, she said, and in some ways the issue’s target voter: a self-described “political junkie” who voted for Sanders in his presidential campaign.

She has a shellfish allergy so she carries an EpiPen — a medication for which drugmaker price hikes sparked national scorn and a congressional hearing. Even though the ballot question would not likely directly affect her medication spending, she thinks prescription drug pricing is a “grave concern” and must be addressed.

So far, though, she’s a likely no vote.

“It just is very confusing,” Herr said, reflecting on her impending Election Day decision. “I have read quite a bit about it, and I don’t think it achieves much of anything.”

In some ways, experts said, this response is to be expected.

Drug pricing is complex and already has caused head-scratching among policymakers and academics, noted Rachel Sachs, an associate professor of law at Washington University in St. Louis, who studies the issue. In a recent congressional hearing, lawmakers struggled to identify the key source of price spikes, or the best place to attempt regulation.

“Confusion is a very normal thing to feel when looking at this,” Sachs said. “And a concern I might have is whether the parties on either side, when they’re spending on advertisements — either for or against the initiative — are really seeking to stoke that confusion.”

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

New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding

November 03, 2017

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out.

They could document their wishes to halt such interventions — and have them honored — using advance directives.

That includes patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity.

But the practice has rarely — almost never — included provisions to refuse food and fluids offered by hand. Until now.

A Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.

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

The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted new “Instructions for Oral Feeding and Drinking” on its website.

Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, said Sally McLaughlin, executive director of EOLWA.

“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin said. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.

“It really is troubling,” said Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.

“An analogy is the difference between when a knee is tapped with a hammer and the reflexive response is a knee jerk and when a person voluntarily raises his or her knee,” said Free. “We think this is a fairly objective test, which in real life will be clear.”

The new guidelines won’t be binding — legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it — or that a facility will honor it,” said Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying.

The new forms follow two recent high-profile cases in which family members said dementia patients were kept alive with spoon-feeding by caregivers, despite written requests to stop.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld that action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

Such cases horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, said she updated her living will herself within days of reading about Harris.

“I thought, ‘Wow, I need to be much more specific,’” said Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”

Free, 71, said he plans to fill out the new documents himself.

“It’s been a personal desire of mine to have a dignified death,” he said. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”

Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025. Paul Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., said some people want to avoid the most debilitating stages of the disease.

“It’s not misery they’re afraid of,” he said. “They just don’t want years of withering.”

The EOLWA document is a novel tool, but it may not go far enough, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she said. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz said. “Maybe this is where it must begin.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

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