For 14 years, Elizabeth Krempley has lived with rheumatoid arthritis (RA). She has also lived with the difficulty of affording the high cost of her medications and the burden of getting her medications covered by insurers. She has not always been able to take her drugs as a result of those difficulties, resulting in adverse health consequences.
As an Arthritis Foundation Advocate, Elizabeth spoke this week at a Congressional briefing on high out-of-pocket prescription drug costs. Elizabeth is a member of the Metro DC Local Leadership Board and has been a member of the local Advocacy Committee since March 2016.
During the briefing, Elizabeth noted that one of the fears she constantly lives with is maintaining access to her medications and being able to afford them. She emphasized that the concern is not just cost but also that she feels her insurer may decide it “doesn’t want me to have the drug.” She has experienced the disappointment of having a “non-rheumatologist who doesn’t know me tell me the drug I need is not medically necessary.”
Elizabeth also spoke of the fear she has experienced of losing her job because of the sheer number of hours she needed to spend during the work day trying to get medication denials reversed. At times, Elizabeth had to solicit the help of her unemployed mother who would spend as much as 8 hours at a time on the phone dealing with the administrative burdens related to her medication denial.
A researcher on the panel, Dr. Mike Geruso of the University of Texas, corroborated many of the stories Elizabeth and the other patient on the panel shared with new data showing that insurers in the Health Exchanges are using their formularies to discriminate against high-cost patients. He noted these insurers have little incentive to cover people with expensive conditions, like RA, in which they lose money, and that important safeguards are critical to incentivizing insurers to cover expensive patients.
The Hill briefing attracted 95 attendees and was held to educate Congressional staff about the difficulties patients face with high out-of-pocket costs and to set the stage for addressing these issues in 2017. The final question of the panel was what insurers, pharmaceutical companies and patient advocacy groups can do to work together to solve the problem. One panelist noted that holding forums like this to lay out the problems and continue bringing stakeholders together is one of the most important things we can do.
The Arthritis Foundation has developed an initiative called Prescription for Access to do just that. The Foundation has met with pharmaceutical companies, insurers, pharmacy benefit managers, CMS and others to get a 360-degree view of access challenges arthritis patients face and to identify short- and mid-term solutions to address those challenges and barriers.
Stay tuned for updates from our Prescription for Access initiative in the coming weeks and months as these conversations continue.
You can join Elizabeth and become an advocate for arthritis by visiting our website.
- Learn more about Prescription for Access
- Constant Commitment in the Wake of Transition – a message from Arthritis Foundation president & CEO, Ann Palmer