When it comes to drug pricing, it’s time for patients to stand up and be counted!

Recently, the Institute for Clinical and Economic Review (ICER), released a scoping document outlining its intentions to evaluate the cost effectiveness of drugs used to treat the autoimmune disease Rheumatoid Arthritis (RA). ICER’s conclusions will be used by Medicare and insurance companies to determine coverage. In other words, the people who use your premiums pay for your prescription drugs are now deciding which drugs they will or won’t pay for, by taking ICER’s advice and using their reports as justification.

RA affects more than 1.3 million Americans, and it is one of many diseases that ICER is reviewing to determine the cost effectiveness of the drugs that doctors use to treat these conditions.

{mosads}It seems like a noble mission; but only if that mission is centered on an unbiased analysis. Otherwise, much needed – and now highly effective – medicines will no longer be covered by health insurers. There has been much public discussion about prescription drug costs, but health insurance companies have managed to evade blame. Even though these middlemen produce nothing but take billions in profit from the system.

There has been serious and valid criticism surrounding ICER’s ties to the insurance industry and the motives behind the conclusions of their reports which ignore or downplay therapeutic benefit, long-term efficacy, quality-of-life and patient satisfaction. To have an honest conversation about drug pricing and insurer practices limiting access to therapies, we need much greater transparency of the insurance companies making these decisions.

The Global Healthy Living Foundation (GHLF) answered the call to comments on ICER’s recent scoping document, and intends to hold ICER responsible for its judgements

ICER and its leadership claim the patient voice is of interest to them.  Supposedly this voice will be added to the conversation and result in positive outcomes for patients. Let’s examine that claim, as I happen to be a patient myself. I was diagnosed with Spondyloarthropathy, which is a form of arthritis, at the age of 13. I co-founded CreakyJoints at the age of 18 in 1999, in order to help fellow arthritis sufferers understand the benefits of exercise, diet, a positive mental outlook, and a productive relationship with their doctor.  Later we combined CreakyJoints into our non-profit Global Healthy Living Foundation where we advocate for improved access to care across many disease states at the community level.  We number more than 100,000 people in the U.S. who suffer from all forms of arthritis, the most common among us being RA. In addition to RA, we also focus on disease areas such as other autoimmune diseases, cardiovascular disease, chronic pain, cancer, and diabetes, reaching about 5 million patients a year.

We do not believe that under its current evaluation criteria, ICER has the intention or capability to sufficiently measure the true impact of treatments, or their value on the lives of patients and their families. If ICER again finds in that a medication is does not fit an insurance company’s profit model, as it did with a new class of cholesterol-reducing drugs called PCSK9 for people who don’t respond to statins, patients will soon find themselves being denied access to medications that have kept, or will keep, them living healthy lives.

It’s time that our “patients” voices are heard. If medications are deemed medically necessary by our doctors, who have years of training, then insurers should be prohibited from removing efficacious medications from formularies based on nothing other than cost and insurer profit margins.  If a medication can save or enhance a life, who are we to deny that patient the opportunity to live or live well? In this circumstance, we are talking about millions of patients with arthritis and we can expand that to tens of millions of patients with other diseases such as high cholesterol. 

Insurers don’t innovate or manufacture medications, they merely serve as the broker. And as our broker – who is charging us an ever escalating amount in premiums, deductibles and co-pays – it’s time they acted in our best interest.

Seth Ginsberg is Co-Founder and President, Global Healthy Living Foundation


The views expressed by authors are their own and not the views of The Hill.

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