Patient Perspective: ICER Report on Rheumatoid Arthritis

Back in March, I had the opportunity to share the patient’s perspective during the public forum portion of The New England Comparative Effectiveness Public Advisory Council.

New England CEPAC is a program of the Institute for Clinical and Economic Review, which is working to cut costs in health care. At this meeting, ICER’s numbers-crunchers reviewed the effectiveness and value of targeted immune modulators treatments for rheumatoid arthritis.

Leading up to the patient comments, I sat through several hours of listening to these life-changing medications evaluated in almost purely economic terms. Dollars and cents, not people with families. Even though I felt my remarks were well-received, I left the meeting wondering if they’d have any meaningful impact on the group.

The ICER report on rheumatoid arthritis treatments shows just how far we have to go in the fight for patient-centered health care.

In a lengthy document considering patients in economic terms, ICER included a few positions to appease patients, namely the position that patients who are on stable therapies should be allowed to remain on their therapy – even when they change insurers.

Isn’t that obvious?

Anna Legassie: Athlete & Patient Advocate

The fact that patients must fight for this provision to be included demonstrates the challenges we face in reforming health care. ICER’s position is framed in a way that puts the burden of proof on each and every RA patient to justify our treatments.

We have to prove that we’re stable because of the treatment. We have to prove our health is jeopardized by a change. And we have to do this in order to get access to the treatment recommended by our doctor. For some patients, the paperwork and bureaucratic hassle required is too much to handle –while also fighting our disease.

Every patient should have access to the treatment or therapy that is prescribed by their doctor. Period.

I know firsthand the challenges and side effects of delaying and denying patients access to the right treatment. I started my current treatment in June of 2015, and, due to employment changes for both me and my partner, I’ve gone through prior authorization for this same medication three different times in less than two years. I’ve been fortunate to remain on the same therapy throughout, but the process of doing so has caused extreme stress, and in one case, delays in my treatment.

Patients should benefit from rebates and other cost saving measures that insurance providers receive from drug manufacturers. Since I first began taking biologics for my RA fifteen years ago, the cost of my monthly co-pay has increased eight times over. Now, while some of this is because my current therapy is one of the most expensive available, there’s no denying that while patients’ out of pocket expense continue to increase, there’s nothing to offset this. Meanwhile, insurers receive massive financial rebates from the current system of health care confusion.

Patients are entitled to a piece of this pie. It is critical that that the patient voice continues to be heard by ICER and other organizations aimed at defining “value” in healthcare.

Make your voice heard at upcoming ICER meetings:

About the Author: Anna Legassie

Anna is a patient advocate, writer, and athlete living with Rheumatoid Arthritis (RA), Pericarditis, and multiple joint surgeries – including bilateral hip replacements. She works in management consulting and has leveraged her professional experience to serve as a patient adviser to health startups, pharmaceutical companies, and other health organizations. Anna lives in Boston with her partner and their rescued chocolate lab, Penny, where she enjoys the local food scene, training for her next race, yoga, and cooking. You can read more about Anna’s patient journey on her blog Six Hips and Counting.

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