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On March 24th, 2017 CreakyJoints’ patient-council Member Chantelle travelled to the New England CEPAC to share her response to the report presented by the Institute for Clinical and Economic Review (ICER). Her comments are posted below:
March 24, 2017
I have no disclosures to make regarding my travel here today. The Global Healthy Living Foundation accepts grants and charitable contributions from pharmaceutical companies, government, private foundations and individuals. It has received scientific briefings from pharmaceutical companies, as well as from its independent medical advisory board. I paid for my own travel here today.
My name is Chantelle Marcial. I’m a patient advocate and member of the Global Healthy Living Foundation’s arthritis community; CreakyJoints. I want to thank you for allowing me to provide my experience living with RA as well as the comments of the over 100,000 patients and caregivers that CreakyJoints serves in the United States.
We were happy to complete ICER’s conflict of interest form to speak here today. All our corporate partners are listed on our website. However, we wish ICER provided that same transparency.
Nevertheless, I offer the three points in response to ICER’s RA draft evidence report.
All of these factors, and more, need to be considered in ICER’s report, not just adverse events.
In addition there is one more reason patients change biologics: they are forced to by an insurer because that insurer can sustain a higher profit margin – sometimes after buying and then following the advice in an ICER report. The most common questions from my peers are about insurance company non-medical switching. Groups like ICER, with its burdensome 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 the RA study. Biologics dramatically improved my quality of life by stopping the progress of joint distortion and allowing me to regain full range of function. It put me back to work.
CreakyJoints, through a multi-year PCORI contract, has built and is populating a patient-reported-outcomes registry of people with arthritis. It is called ArthritisPower. We are using many components of the ICER RA model as instructive of what NOT to do, such as reliance on short-term clinical trials data, lack of observational research, dismissing co-morbidities, not clearly defining the benefits of infusion vs. injected, not accepting my patient data as well as population data, and relying on a small universe of HAQ scores. Instead, we are focused on long-term patient data which can be combined with clinical and payer data. The objective is to reduce healthcare costs by incorporating societal as well as short- and long-term health benefits with the patient, not the payer, driving the conclusions.
Thank you for the opportunity to submit these comments on the draft report.