Medicare Treatment Costs and Delays for Chronically Ill Americans Highlighted During Capitol Hill Briefing

WASHINGTON, D.C. (June 25, 2018) –– Healthcare providers and patient advocates today discussed the access and affordability issues that too often prevent or delay Medicare patients with chronic illnesses from receiving necessary treatments during a Capitol Hill briefing, “Medicare Access Challenges in the Chronic Disease Community: The Patient Perspective.”

Hosted by the American College of Rheumatology and the National Psoriasis Foundation (NPF), the briefing provided an opportunity for lawmakers and their staff to hear firsthand accounts about the challenges – including high cost sharing, restrictive insurer practices, and a broken prior authorization system – that make it difficult for chronically ill Medicare patients to access and afford needed medications.

Rheumatology providers and patient advocates living with psoriatic disease shared personal stories detailing these challenges and encouraged Congressional leaders to address the existing access barriers chronically ill Americans face as policymakers consider sweeping reforms to Medicare’s drug pricing and delivery system. 

“As a Medicare beneficiary and someone who’s lived with psoriatic disease for most of my adult life, I am all too familiar with the access and affordability challenges patients face when accessing care through Medicare,” said Kathleen Gallant, a patient advocate and Ex Officio Board Member of NPF. “It’s vitally important that lawmakers understand the barriers encountered by individuals with chronic disease so they can enact solutions that make Medicare easier to navigate for all Americans.” 

Medicare patients living with psoriasis, psoriatic arthritis, or rheumatic diseases like rheumatoid arthritis and lupus are especially vulnerable to the restrictive insurer practices and high out-of-pocket costs that plague Medicare’s Part D program, panelists said.

“I have seen too many of my patients with Medicare prescription drug plans experience frustrating delays in getting treatment while facing increasingly higher cost-sharing and out-of-pocket costs,” said Dr. Angus Worthing, FACP, FACR, a practicing rheumatologist and chair of the American College of Rheumatology’s Government Affairs Committee. “We need policymakers to enact concrete solutions that limit restrictive insurance practices such as step therapy, speciality tiering with high out-of-pocket costs, and non-medical switching so that chronically ill Americans, including the millions who live with a rheumatic disease, are able to get the care they need and deserve.”

A 2018 NPF survey found that over 50 percent of Medicare beneficiaries with psoriatic disease experience financial strain due to the cost of their medications and one in three Medicare beneficiaries with psoriatic disease who take biologic medications already face over $200 in monthly out-of-pocket costs.

“As someone who will soon transition into the Medicare system, I’m concerned that I might face difficulty affording the medication I need to manage my psoriasis,” said John Earley, a patient advocate who serves on the NPF National Advocacy Committee. “I’ve been on the same medication for 15 years and it has worked well for me. I’m concerned that the high out-of-pocket costs found in many Medicare prescription drug plans will make it prohibitively expensive for me to afford the treatments that my doctor and I both agree are best.”

The panel also urged lawmakers to take into account the differences between Medicare Part B and Part D treatments with regard to the mode of delivery, patient experience, and patient access, including the difference in out-of-pocket cost burden.

“The biologic infusion and injectable therapies covered under Medicare Part B are fundamentally different from the prescription drugs found in Part D since they must be safely administered in a monitored setting by a qualified health professional,” said Dr. Colin Edgerton, MD, FACP, FACR, RhMSUS, a practicing rheumatologist who chairs the American College of Rheumatology’s Committee on Rheumatologic Care. “I worry that the Administration’s current proposal to consolidate the two programs would expose patients to many of the same access issues they currently face in Part D. As policymakers move forward with drug pricing reforms, they should ensure that their policies improve treatment access rather than reduce it.”

As many as 54 million Americans have a doctor-diagnosed rheumatic disease, and a recent academic study suggests that number could be as high as 91 million. More than 8 million Americans have been diagnosed with psoriasis, a chronic, immune-mediated disease. In addition to the rheumatic and psoriatic disease communities, these policy proposals have the potential to impact tens of millions of Americans living with other chronic and complex conditions.

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About the National Psoriasis Foundation

Serving its community through more than 50 years of patient support, advocacy, research funding, and education, the National Psoriasis Foundation (NPF) is the world’s leading nonprofit fighting for individuals with psoriasis and psoriatic arthritis. The NPF mission is to drive efforts to cure psoriatic disease and dramatically improve the lives of more than 8 million Americans affected by this chronic immune-mediated disease. As part of that effort, NPF created its Patient Navigation Center to offer personalized assistance to everyone with psoriasis or psoriatic arthritis. To date, NPF has funded more than $21 million in research grants and fellowships that help drive discoveries that may lead to more and better treatments and ultimately a cure. Learn more at