How to get the care you need
Charlene Gardener, of Hatboro, Pa., was overwhelmed when she was diagnosed with psoriasis. The diagnosis came in the midst of other debilitating physical ailments she had developed over 23 years as a dock manager and forklift operator.
"I was under so much stress during what I call my 'year of hell,' and it came on like gangbusters," she said.
Then her dermatologist told her about the everexpanding world of biologic drugs.
"I had become a total recluse with my skin condition," Gardener said. "But as soon as I started to take Enbrel, I was virtually fixed in a week."
However, as a Medicare recipient, the initial copayment for Enbrel was $1,100 for a three-month supply. She realized getting the best medical help was going to be difficult.
Gardener's situation isn't unique. Many psoriasis and psoriatic arthritis patients on Medicare find themselves caught between the plan's purpose — to help people pay for health care — and the government's goal of controlling costs. That creates a challenging situation for people with psoriasis and psoriatic arthritis who require expensive treatments.
Medicare fee schedule
The challenge of affording treatments while on Medicare extends beyond biologic drugs. In July, the Centers for Medicare and Medicaid Services (CMS) released its annual Medicare fee schedule update, which proposed reductions by as much as 60 percent for the amount a physician is reimbursed for phototherapy treatments. Many dermatologists have warned that if these rates go into effect on Jan. 1, it is likely to result in phototherapy clinics closing or moving to cash-only practices. In a letter posted on www.regulations.gov, which allows public comment on federal documents, Dr. Erin Boh, a dermatologist at Tulane University School of Medicine, wrote that phototherapy is her first choice for the elderly, children with severe psoriasis and pregnant women.
"While not expensive, phototherapy requires a person to administer light and monitor the patient while getting it," she wrote. "If you decrease reimbursements for this valuable therapy, my office may not be able to continue providing this therapy. This will only result in using more expensive drugs for treatment or patients not having effective therapy."
Under the proposed fee schedules, reimbursement for ultraviolet light B therapy would decrease 50 percent, while reimbursement for ultraviolet light A therapy would decrease 60 percent. According to the American Academy of Dermatology, reimbursement is typically in the $80 to $100 range per session, but that amount would be reduced to $37 under the proposed schedule for many practices, an amount too low to cover the actual cost of providing phototherapy services.
Dr. Colby Evans, an Austin, Texas-based dermatologist and board member of the National Psoriasis Foundation, said that when seeking treatment, patients should arm themselves with as much information as possible and be diligent with everyone involved in the process, from Medicare to pharmaceutical copay assistance programs to physicians.
"Be persistent," he said. "You will hear 'no' as you pursue answers and funding. There are many choices and many good treatments. But if you give up, you're not going to get anything."
Evans echoed worries that cuts to Medicare may prompt more patients to take biologics over less-expensive phototherapy treatments, even if phototherapy is working. "If they can't be reimbursed (enough) by Medicare, they're losing money doing it," he said. "And that may result in a substantial drop in access to care."
Continuing the fight
Leah Howard, director of government relations and advocacy for the National Psoriasis Foundation, said the organization will continue to push for improved patient access to both lower-priced therapies, including phototherapy, systemics and topicals, and higher-priced therapies such as biologics. She said it is unfortunate that the phototherapy codes used to treat psoriasis got swept up in a larger effort by the agency to reduce costs.
"We know that phototherapy is one of the safest and most cost-effective therapies for psoriasis and is a front-line therapy option for certain subsets of psoriasis patients with limited treatment options, including children, pregnant women, nursing women and immunosuppressed patients," Howard said. "That's why we explained in a comment letter this summer to the agency that if these cuts are implemented, patients with psoriasis who rely on phototherapy are likely to lose access to treatment or be switched to treatments that cost at least 10 times more."
Howard said this is part of a larger challenge within Medicare: Who bears the costs for copays and premiums.
Gardner said she found her solution in the ENcourage Foundation, which helped pay the full cost of her medication. She does, however, have to reapply for coverage each year, submitting tax returns as proof of income.
"I need this medication, but I know that I'll be on it forever, and it is a lot of work to go through just to stay healthy," she said.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! 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 funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.