On Friday March 24, after many months of review, the Institute for Clinical and Economic Review (ICER) held a public meeting in Boston, MA to discuss evidence findings on treatments for rheumatoid arthritis (RA). ICER is a non-profit organization that reviews the effectiveness of medications and their costs.
Throughout the RA treatment review, we continuously engaged with ICER, pushing ICER to consider the unique perspectives of individual patients, their caregivers and providers. During the March 24 meeting, we played a vital role, presenting patient-centered research, asserting the patient voice and displaying strong leadership on behalf of the arthritis community.
To kick the meeting off, we presented data from three patient surveys that we conducted, helping the panel better understand innovative biologic therapies, patient treatment perspectives and utilization management statistics. Panelists were shocked to learn that almost half of the survey’s respondents had to go through step therapy and of those, 22 percent had to repeat the steps when their insurance changed, even if they were stable on their drug.
After a very detailed data presentation from ICER staff, the public comment period opened. The arthritis community was well represented by three patients, Anna Legassie, Renay Houlem, and Jen Melanson, who are also members of our Advocate program.
“I’m lucky. I’m on a biologic that works for me – that allows me to run spartan races and live my life. I’m leaving this meeting to go get my infusion,” said Legassie. “I found out that my insurer doesn’t actually cover my medication on the formulary, but I haven’t been denied treatment, yet. I live in fear each time I go to get my infusion that it will be the time when they tell me I’ve been denied. Access to my biologic allows me to work and contribute to society economically at the same level or above many healthy people.”
After lunch, the voting panel commenced with an expert panel of researchers, patients and doctors for questions by the voting committee. Jan Wyatt, PhD, nurse practitioner and member of our Advocate program served on the expert panel. Dr. Wyatt noted that it is imperative for the patient perspective to be a top consideration when determining value, helping the voting panel understand that today’s treatments make a significant impact, helping people with arthritis live full and productive lives. Rounding out the afternoon, Dr. Wyatt served on a policy roundtable where ICER Founder and President Dr. Steve Pearson directed many questions at panel members regarding insurance coverage, access issues, drug pricing, future research and utilization management strategies.
Our Advocates played a critical role at the ICER meeting, powerfully representing the patient perspective. Every voting member of the ICER panel noted that our Advocates’ testimony significantly impacted their knowledge and understanding of the issues.
We also received comments and appreciation for the work we did to inform ICER panelists throughout the entire review. Dr. Pearson publicly thanked us for our work in conducting patient surveys and engaging the patient community.
Moving forward, the final report on treatments for RA will be released April 7, 2017, but our work doesn’t stop there. We will continue to engage with ICER to make sure their processes are transparent and include the patient perspective. Together with our Advocates, we will add real value to the discussion.