Patient Council Member Chantelle responds to ICER Report


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.

  1. When our arthritis community, CreakyJoints (www.creakyjoints.org) began in 1999 our patient events were held in ADA-accessible locations with ample space for participants and their wheelchairs or other assistive devices. 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 cDMARD. Biologics stopped what happened to her from happening to me. Biologics, not Methotrexate, took away the wheelchairs. Today, it is rare to see a wheelchair at an event. What we do see, however, are patients like me who have cycled through two, three, or more biologics to find the one that works. Sometimes we switch because of adverse events, and sometimes because the drug failed. Some patients are not compliant.

    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.

  2. Using short-term clinical trial data ignores the nearly two-decades-old benefits of substituting legs for wheelchairs. Calculating the economic benefits to society derived from sustained worker productivity and quality-of-life that results from the use of biologics is imperative.

     

  3. We interpret the draft report as being additionally biased toward long-term cDMARD use because it does not appear to calculate the cost of long-term joint degradation in some patients. When cDMARDS work, CreakyJoints supports their use unconditionally. When cDMARDS don’t work to halt joint degradation, we readily accept the benefits of biologics which stop joint erosion, as they have done so effectively for me. ICER should, too. If ICER were recommending cDMARD use with joint erosion vigilance, we would be less troubled by this part of the draft. Personally, if given the choice between stopping joint erosion or submitting to future joint replacements, I would avoid joint replacement surgery. With this report, ICER is choosing joint replacement for me with all the associated high direct and indirect costs, and risks.

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.