Medicare

Seniors Face Crushing Drug Costs as Congress Stalls on Capping Medicare Out-Of-Pockets

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Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.

Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn’t afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.

Every year, however, Clark has to find new grants to cover her expensive cancer drug.

“It’s shameful that people should have to scramble to find funding for medical care,” she said. “I count my blessings, because other patients have stories that are a lot worse than mine.”

Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It’s often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients’ 5% coinsurance costs once they hit $6,550 in drug spending this year (rising from $6,350 in 2020), except for very low-income beneficiaries.

Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there’s disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.

That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America’s uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.

Growing Expense of Specialty, Cancer Medicines

Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)

The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.

For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark’s drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes “pricing should be put in the context of the value, or benefit, the medicine delivers to patients, health care systems and society overall,” a spokesperson for Bristol Myers Squibb said via email.

As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program’s catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees’ average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.

The median annual income for Medicare beneficiaries is $26,000.

Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor’s office and they have a Medigap or Medicare Advantage plan, which caps those expenses.

But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.

“With the high cost of drugs today, that 5% can be a third or more of a patient’s Social Security check,” said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.

This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn’t allowed by Medicare.

‘This Is a Little Nuts’

All this has caused financial and emotional turmoil for people who face a life-threatening disease.

Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That’s because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.

But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.

Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she’d pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won’t know until sometime this month.

“It’s just strange you have to make a decision about your treatment based on your finances rather than what’s the right drug for you,” she said. “I always thought that when I get to Medicare age I’ll be able to breathe a sigh of relief. This is a little nuts.”

Bristol Myers Squibb paid Marilyn Rose’s insurance deductible and copays, so she could continue using Sprycel — a cancer drug for her leukemia — when she had private insurance. But Medicare doesn’t allow that. (Marilyn Rose)
Sharon Clark’s cancer drug, Pomalyst, costs her $18,000 for a 28-day supply. Patient assistance foundations provide financial aid, but to benefit she must be fortunate enough to catch the window for securing the limited funds available. (Sharon Clark)

Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.

“If I didn’t do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn’t get the drug, which is awful,” said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. “Patients would just say, ‘I can’t afford it. I’ll just die.’”

The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.

But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.

“If you are a normal consumer, you don’t know much about any of this until you get sick and all of a sudden you find out you can’t afford your medication,” he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.

Yet many don’t. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.

Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. “People tell me they haven’t started treatment because they don’t have money to pay,” she said. “No one in this country should have to choose between housing, food or medicine. It should never be that way, never.”

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

Medicare Open Enrollment Is Complicated. Here’s How to Get Good Advice.

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If you’ve been watching TV lately, you may have seen actor Danny Glover or Joe Namath, the 77-year-old NFL legend, urging you to call an 800 number to get fabulous extra benefits from Medicare.

There are plenty of other Medicare ads, too, many set against a red-white-and-blue background meant to suggest officialdom — though if you stand about a foot from the television screen, you might see the fine print saying they are not endorsed by any government agency.

Rather, they are health insurance agents aggressively vying for a piece of a lucrative market.

This is what Medicare’s annual enrollment period has come to. Beneficiaries — people who are 65 or older, or with long-term disabilities — have until Dec. 7 to join, switch or drop health or drug plans, which take effect Jan. 1. By switching plans, they can potentially save money or get benefits not ordinarily provided by the federal insurance program.

For all its complexity and nearly endless options, Medicare fundamentally boils down to two choices: traditional fee-for-service or the managed care approach of Medicare Advantage.

The right choice for you depends on your financial wherewithal and current health status, and on future health scenarios that are often difficult to foresee and unpleasant to contemplate.

Costs and benefits among the multitude of competing Medicare plans vary widely, and the maze of rules and other details can be overwhelming. Indeed, information overload is part of the reason a majority of the more than 60 million people on Medicare, including over 6 million in California, do not comparison-shop or switch to more suitable plans.

“I’ve been doing it for 33 years and my head still spins,” says Jill Selby, corporate vice president of strategic initiatives and product development at SCAN, a Long Beach nonprofit that is one of California’s largest purveyors of Medicare managed care, known as Medicare Advantage. “It’s definitely a college course.”

Which explains why airwaves and mailboxes are jammed with all that promotional material from people offering to help you pass the course.

Many are touting Medicare Advantage, which is administered by private health insurers. It might save you money, but not necessarily, and research suggests that, in some cases, it costs the government more than administering traditional Medicare.

But the hard marketing is not necessarily a sign of bad faith. Licensed insurance agents want the nice commission they get when they sign somebody up, but they can also provide valuable information on the bewildering nuances of Medicare.

Industry insiders and outside experts agree most people should not navigate Medicare alone. “It’s just too complicated for the average individual,” says Mark Diel, chief executive officer of California Coverage and Health Initiatives, a statewide association of local outreach and health care enrollment organizations.

However, if you decide to consult with an insurance agent, keep your antenna up. Ask people you trust to recommend agents or try eHealth or another established online brokerage. Vet any agent you choose by asking questions on the phone.

“Be careful if you feel like the insurance agent is pushing you to make a decision,” says Andrew Shea, senior vice president of marketing at eHealth. And if in doubt, don’t hesitate to get a second opinion, Shea counsels.

You can also talk to a Medicare counselor through one of the State Health Insurance Assistance Programs, which are present in every state. Find your state’s SHIP at www.shiptacenter.org.

Medicare & You, a comprehensive handbook, is worth reading. Download it at the official Medicare website, www.medicare.gov.

The website offers a deep dive into all aspects of Medicare. If you type in your ZIP code, you can see and compare all the Medicare Advantage plans, supplemental insurance plans, known as Medigap, and stand-alone drug (Part D) plans.

The site also shows you quality ratings of the plans, on a five-star scale. And it will display your drug costs under each plan if you type in all your prescriptions. Explore the website before you talk to an insurance agent.

California Coverage and Health Initiatives can refer you to licensed insurance agents who will provide local advice and enrollment assistance. Call 833-720-2244. Its members specialize in helping people who are eligible for both Medicare and Medicaid, the health insurance program for low-income people.

These so-called dual eligibles — nearly 1.5 million in California and about 12 million nationwide — get additional benefits, and in some cases, they don’t have to pay Medicare’s monthly medical (Part B) premium, which will be $148.50 in 2021 for most beneficiaries, but higher for people above certain income thresholds.

If you choose traditional Medicare, consider a Medigap supplement if you can afford it. Without it, you’re liable for 20% of your physician and outpatient costs and a hefty hospital deductible, with no cap on how much you pay out of your own pocket. If you need prescription drugs, you’ll probably want a Part D plan.

Medicare Advantage, by contrast, is a one-stop-shop. It usually includes a drug benefit in addition to other Medicare benefits, with cost-sharing for services and prescriptions that vary from plan to plan. Medicare Advantage plans typically have low to no premiums — aside from the Part B premium that most people pay in either version of Medicare. And they increasingly offer additional benefits, including vision, dental, transportation, meal deliveries, and even coverage while traveling abroad.

Beware of the risks, however.

Yes, the traditional Medicare route is generally more expensive upfront if you want to be fully covered. That’s because you pay a monthly premium for a Medigap policy, which can cost $200 or more. Add to that the premium for Part D, estimated to average $41 a month in 2021, according to KFF. (KHN is an editorially independent program of KFF.)

However, Medigap policies will often protect you against large medical bills if you need lots of care.

In some cases, Medicare Advantage could end up being more expensive if you get seriously ill or injured because copays can quickly add up. They are typically capped each year, but can still cost you thousands of dollars. Advantage plans also typically have more limited provider networks, and the extra benefits they offer can be subject to restrictions.

Over one-third of Medicare beneficiaries nationally are enrolled in Advantage plans. In California, about 40% are.

The main appeal of traditional Medicare is that it doesn’t have the rules and restrictions of managed care.

Dr. Mark Kalish, a retired psychiatrist in San Diego, says he opted for traditional fee-for-service with Medigap and Part D because he didn’t want a “mother may I” plan.

“I’m 69 years old, so heart attacks happen; cancer happens. I want to be able to pick my own doctor and go where I want,” Kalish says. “I’ve done well, so the money isn’t an issue for me.”

Be aware that if you don’t join a Medigap plan during a six-month open enrollment period that begins when you enroll in Medicare Part B, you could be denied coverage for a preexisting condition if you try to buy one later.

There are a few exceptions to that in federal law, and four states — New York, Massachusetts, Maine, Connecticut — require continuous or yearly access to Medigap coverage regardless of health status.

Make sure you understand the rules and exceptions that apply to you.

Indeed, that is an excellent rule of thumb for all Medicare beneficiaries. Read up and talk to insurance agents and Medicare counselors. Talk to friends, family members, your doctor, your health plan — and other health plans.

When it comes to Medicare, says Erin Trish, associate director of the University of Southern California’s Schaeffer Center for Health Policy and Economics, “it takes a village.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.