CreakyJoints Protests ICER’s Rheumatoid Arthritis Evidence Report

UPPER NYACK, NY (March 24, 2017) – CreakyJoints, the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research, offered its strong objection to the Institute for Clinical and Economic Review’s (ICER) Rheumatoid Arthritis: Evidence Report in writing on February 17, 2017. CreakyJoints community member and patient advocate Chantelle Marcial provided additional comments on behalf of the organization in person at ICER’s public meeting on arthritis on March 24, 2017.

CreakyJoints asserts that the ICER analysis of rheumatoid arthritis treatments overvalues suppression of symptoms using cMARDs over the longer term benefits enjoyed by patients who reduce their risk for possible joint degregation by the use of more complex, and more expensive, biologic medicines. In her comments at the ICER event on March 24th GHLF Patient Advocate Chantelle Marcial stated, “For decades, patients were overwhelmingly limited to cDMARD therapy such as Methotrexate. My mother was an example and she lost the ability to walk. For 25 years, her only options were cDMARDs. Biologics stopped what happened to her from happening to me. Biologics, not Methotrexate, took away the wheelchairs.”

“ICER’s analysis focuses on short-term clinical studies and reported adverse events over quality of life measures. If this report is used as evidence by payers to erect additional barriers to treatment that favor older, less expensive medications, the health of millions of people living with rheumatoid arthritis (RA) as well as their right to determine their personal treatment plan, is threatened,” stated Louis Tharp, Executive Director and Co-Founder of CreakyJoints. “Calculating the economic benefits to society derived from sustained worker productivity and quality-of-life that results from the use of biologics is imperative if we claim to exist in a reality-based healthcare paradigm.”

Typically, RA patients cycle through two, three, or more biologics in order to find the one that works for them. Sometimes they switched because of adverse events, sometimes for a lack of success, and sometimes because they were not compliant. All of these factors, and more, need to be considered when making recommendations for treatment, not just adverse events and cost. In addition, patients may also switch between biologics if their insurer can sustain a higher profit margin by non-medically switching the patient, which means that the cost or prerequisites to access their current medication has changed in the middle of a plan year. Groups like ICER, with its insurance company bias, can exploit its position in the research community to speed up the non-medical switching trend by creating a seemingly logical structure that allows the false conclusion that the cheapest and oldest drugs are always the best. This is especially true in their RA study.

“Via our patient-reported outcomes registry of people with arthritis, ArthritisPower™, CreakyJoints is learning more about the arthritis community by soliciting observational research, including people with co-morbidities to understand treatment effectiveness, and asking our community about what factors most influence their treatment decisions,” added Mr. Tharp. “Understanding the treatment needs of the RA community has to be based on more than short term clinical trial data and profit margins. Real people with diverse health histories need to have the freedom to determine their own treatment plan in consultation with their healthcare team.”

About CreakyJoints
CreakyJoints, now in its 18th year, is the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. Co-founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, CreakyJoints is part of the Global Healthy Living Foundation, whose mission is to improve the quality of life for people with chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.

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Media Contact: Jessica Daitch | Phone: 917-816-6712 | Email: [email protected]

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About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness e!orts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. Visit ghlf.org for more information.