On June 25, 2018, the National Psoriasis Foundation and the American College of Rheumatology hosted a congressional briefing on Medicare access challenges for the chronic disease community. The event featured two NPF patient advocates – Kathleen Gallant and John Earley – as well as two physician advocates affiliated with the ACR.
The briefing was an opportunity to educate congressional staff about the particular challenges our community faces when accessing care through Medicare. While it’s generally believed that health care access greatly improves when individuals become eligible for Medicare, for many patients, the program presents a unique set of barriers to gaining the care they need to properly manage their psoriasis and psoriatic arthritis.
The 2018 NPF National Advocacy Survey highlighted many of these challenges. Results from the survey indicated than more than half of Medicare beneficiaries with psoriatic disease experience financial strain due to the costs of their specialty medicines. In fact, one in three Medicare patients on a biologic spend more than $200 per month in out-of-pocket costs for their treatments.
Hard choices and too much uncertainty
At the congressional briefing, both Gallant and Earley shared their personal experiences. Gallant, a long-time Medicare beneficiary, detailed the different barriers she has faced and the hard choices she has had to make when balancing care and costs. She notes, “With my treatment, and other people on fixed income like me, the bottom line is the cost. [The lower cost treatment] may not be as effective, especially over the long run…but at least it’s something that I can do.”
Earley will become Medicare-eligible this winter. He discussed the struggles he’s experiencing trying to prepare for the transition and the ways he anticipates Medicare to be different from his commercial plans. He’s especially concerned about the uncertainty in Medicare reforms and what that means for his ability to make informed choices. “Health care insurance is my biggest expense,” he states. “Not being able to plan for it and not knowing how much I am going to have to pay for it until the last minute is burdensome. A bad decision in selecting a health care insurance plan could cost me thousands or even tens of thousands of dollars.”
Their perspectives were amplified by the physicians on the panel who shared how they try to help patients navigate the program and the different treatment factors they have to consider for Medicare beneficiaries.
Reforms on the horizon?
The discussion also focused on the President’s drug-pricing reform blueprint, which includes several possible reforms to the Medicare program. For instance, at the event, NPF shared its support for proposals to add a true out-of-pocket catastrophic cap to the Medicare Part D program to help patients better manage their cost-sharing requirements. The benefits of an expanded biosimilars market were also discussed as a way to increase access and reduce costs for beneficiaries.
However, NPF and ACR are concerned that a few of the policies proposed by the Administration could do more harm than good for Medicare beneficiaries. We used the briefing as an opportunity to share the unique nature of psoriatic disease care and raise some principles for how the government can implement drug-pricing reforms that increase access for the psoriatic disease and arthritis communities.
Briefings like this allow our patient community to provide valuable information to policymakers as they weigh reforms to our health care system. While data and policy analysis are important, patient stories often have the largest impact on the legislative process. We are grateful for Gallant and Earley for sharing their personal experiences with Medicare and advocating on behalf of the millions of psoriatic disease patients in the program.
As policy proposals move forward, the NPF Advocacy team will continue to share your voice in our nation’s capitol. Find out how you can get involved with our advocacy work just like Kathleen Gallant and John Earley.
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.