Navigating the health care potholes

| Emily Delzell

Julie Ryan has Medicare coverage and pays for a supplemental Medicare Advantage health maintenance organization (HMO) plan. Neither covers the biologic her rheumatologist prescribed to treat her moderate-to-severe psoriasis and psoriatic arthritis (PsA) in a way she can afford. 

Medicare covers most of the cost of her doctor’s visits, specialist care and potential hospitalizations, but she’s not yet eligible for prescription drug coverage plans. 

Because Ryan, 50, qualified for Social Security disability after her medical conditions ended her career as a radiation therapist, she was approved (after a two-year wait) for Medicare coverage. But she’s still too young (under 65) to qualify for Medicare Part D, the program’s prescription drug coverage plans. 

She purchases a supplemental plan, for which she pays about $134 a month. It covers some of her medications (Ryan also has fibromyalgia and bipolar disorder) with relatively reasonable copays of $30 to $50 per prescription. 

The $2,600 monthly copay for her prescribed biologic, however, falls far outside her financial reach.

So, Ryan, who lives in Pompano, Florida, uses the patient assistance program sponsored by the company that manufacturers her biologic. Thanks to this program and its copay discount card, her monthly cost is zero. But there are big trade-offs: first, the twisting trails of red tape for the program’s mandatory yearly reapplication process and waiting period, along with unpredictable gaps in the program’s funding. As a result, she has twice gone for a year without access to her biologic medications. 

“When I don’t take my biologic, my pain and flareups happen more often and are more intense.  I get tired all the time because I’m constantly in pain,” she says. “My pain level can go from a five to a 10 anytime. When it gets to a 10, I go to the doctor and get steroid injections, NSAIDs [nonsteroidal anti-inflammatory drugs], and narcotics in order for it to come down. I’d rather not be taking these things instead of the biologic that I need. I know there’s no cure for psoriatic disease, but biologics can slow or stop the progression and the disability, and that’s all I’m asking for.” 

Insecurity – financial and emotional – is perhaps the most stressful and challenging feature of Ryan’s cobbled-together health insurance coverage. There is no guarantee that the program she relies on will continue to cover her biologic copayment, which could mean a future of worsening health and shrinking independence. 

Going into open enrollment, she’s unsure – and nervous – about what 2019 will bring. 

“There are no guarantees – and no way to know what my costs for next year might be,” she says. “Every year I worry, and I wonder, ‘What are they going to cover next year?’”

From marketplace to Medicare 

Uncertainty about health care costs and adequate coverage is also a major source of anxiety and frustration for John Earley, 64, who lives with his wife, Patricia, in the Dallas-Fort Worth area. 

Earley was diagnosed with psoriasis in the 1970s and suffered for years with widespread, itching plaques that none of the then-available treatments could improve. For two years in the early 2000s, he took a systemic medication that he says cleared his skin but left him with headaches and high blood pressure. After a trip to the emergency room, his wife convinced him to stop that drug, even though this meant a return to skin that looked like “hamburger meat.” 

In 2003, his dermatologist got him into a clinical trial for a tumor necrosis factor biologic, then a new class of drugs for psoriatic disease. “After 60 days on the drug, my psoriasis was gone,” he says. 

A self-employed architect until he retired in 2017, Earley and his wife, a breast cancer survivor, for years bought insurance through a state high-risk insurance pool. “We ended up in the high-risk pool because of our pre-existing conditions,” he says. “It was expensive, but it covered my medications and allowed me and my wife to see our established physicians. We knew what was covered and what to expect in terms of cost from year to year.” 

Then came 2014 and the widespread implementation of the Affordable Care Act (ACA).

“The struggle now since the Affordable Care Act is finding the right insurance for me and my wife – who wants to continue to see the doctors who treated her breast cancer – so we are not out of pocket a large amount of money,” he says. Although the Earleys’ health insurance costs through the ACA marketplace are slightly lower than those of the high-risk insurance pool coverage he bought previously, he says it’s not worth the trade-off of the yearly changes in plans and the drugs, providers and hospitals they cover.  

“Sorting through this has required many hours of research on my part each fall to make sure that I don’t make a financial mistake,” he says. “You really have to pay attention to the fine print.”

Last year, a careful review of the details prompted Earley to buy separate insurance plans for himself and his wife.
“I got one plan that covered my medications and doctors and found another plan for my wife so that she could continue to see her cancer physicians,” he says.
Like Ryan, Earley uses a copay card – a kind of discount coupon provided by the biologic’s manufacturer – to offset the cost of his biologic. When he and his wife turn 65 in December, they’ll switch to Medicare and its prescription drug coverage – but that program bars patients who use the federally funded insurance from using discount cards and coupons. (Federal anti-kickback laws make it illegal for drug manufacturers to offer monetary incentives that could influence patients to buy drugs that Medicare would then have to cover.)

All of which means Earley has no idea what he’ll be paying in 2019 for his biologic and health care. 

“Health insurance is my biggest expense,” he says. “Not being able to plan for it or how much I am going to have to pay for it until the last minute is burdensome. A bad decision in selecting a health insurance plan could cost me thousands or even tens of thousands of dollars. To have to read all the fine print so you understand the rules almost requires a law degree. The unknown is the most frightening part.” 

The challenge in choosing plans

Insurers are tightening the coverage they offer, giving consumers fewer options when it comes to the medications, doctors and the hospitals in network, says National Psoriasis Foundation (NPF) Patient Navigator Emma Granquist. 

“Narrowing options in the marketplace is an ongoing issue. During open enrollment patients may find that their plan is no longer offered, or that it covers their medication, but not the dermatologist or rheumatologist they see,” she says. “Many patients tell us they’ve had to switch plans to continue with their doctors or stay on the medication that’s been working for them.”

Granquist cannot predict what consumers will find during open enrollment in terms of deductibles, medications covered by a particular insurance plan or in-network providers and hospitals.  

She recommends thinking about each of these areas carefully before making coverage decisions. “Make a list of all your health care providers and of the drugs you take. Check to see if the plans you’re considering cover them [some may require pre-authorization for drugs you’re already taking, for example] so you won’t have big surprises when it comes to your access to medications and doctors or your out-of-pocket costs,” she explains.  

Medicare patients should also research their coverage options carefully, look for gaps in prescription drug coverage, and consider the purchase of supplemental plans to limit their financial exposure, Granquist says. 

It’s not just patients who purchase health insurance through state or federal marketplaces or are insured through Medicare who face barriers to medical care, says NPF medical board members Lawrence J. Green, M.D., associate clinical professor of dermatology at George Washington University School of Medicine in Washington, D.C.

“Whether a patient has commercial insurance through an employer, buys it on the marketplace, or has Medicare, there is almost always an issue when it comes to biologics,” he says. “Prescribing a biologic means a lot of paperwork on the provider’s end to try and get it approved, and many times it is not approved. In many cases, pharmaceutical companies have programs that provide the drug at no cost to the patient for months at a time, while we continue to try and get approval through the insurer.” 

A 2018 analysis of 3.6 million people with chronic inflammatory diseases, including psoriasis and PsA, found that, on average, those who purchased health care coverage through marketplaces were 20 percent less likely than those with commercial insurance to be taking a specialty drug like a biologic for their disease. 

The study, published in January 2018 in the Journal of Managed Care & Specialty Pharmacy, also highlighted large geographical variations in the rates of specialty drug use among those with marketplace plans, findings that echo the wild swings in rates and coverage that cause so much uncertainty among consumers. The human fallout

Green says that health insurance issues pervade every aspect of his medical practice. “It’s disheartening to be a physician and to try and get patients the medications that will work best for them,” he says. 

Steven R. Feldman, M.D., Ph.D., professor of dermatology, pathology, and public health sciences and director of the Center for Dermatology Research at the Wake Forest School of Medicine in Winston-Salem, North Carolina, also sees many of his patients struggle to get their medications covered. 

“I have three nurses who work full-time on insurance-related issues,” says Feldman, NPF medical board member. “Most patients are limited in their options in some way. I think that the idea that financial considerations should have no role in medical decision-making is a fantasy that’s not sustainable. There aren’t unlimited resources, and someone has to be responsible for reining in the cost of health care.” 

Granquist hears about human fallout from the hard realities of health care coverage every day in her role as a patient navigator. 

“There is a lot of general confusion about how to choose coverage options and also a sense of isolation – people feel they’re facing overwhelming problems without guidance or help,” she says. 

She encourages people with psoriasis or PSA to tap into the assistance offered by the Patient Navigation Center. Julie Ryan did, and it was from an NPF navigator that she first learned about the patient assistance program she now uses to cover the copay for her biologic.  

NPF navigators can also answer questions about insurance denials and other coverage issues as well as help people with psoriasis and PsA connect with others who share their experiences. 

Both Ryan and John Earley also are active NPF volunteers, working to change laws to make it easier for people with psoriatic disease to access the care they need. Earley testified about these challenges at a June 2018 congressional hearing in Washington, D.C. 

“I can’t make intelligent and informed decisions for my health care insurance and responsibly plan for my financial future if I don’t know from one year to the next what my coverage and costs are going to be,” he said. “Yes, these drugs are expensive, but they are keeping folks off disability and giving them back a quality of life. We need to increase the momentum of research to help folks like us and continue to look for alternatives and a cure, but we need your help.”

Help navigating insurance complexity 

Making decisions when it comes to your health without all the facts can be hard. Request info to help you get the most out of your insurance.

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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