The Fibromyalgia community requests an NIH increase in budget spend on Fibromyalgia specific research to $20 million.

On September 19th, 2019, thirty Fibromyalgia advocates and caregivers descended on Capitol Hill to discuss Fibromyalgia research and medical education initiatives. These advocates took on 54 meetings and discussed issues related to epidemiology, pathophysiology, diagnostic criteria, treatments, consistent educational resources, and impact on the quality of life. Stories and facts were shared, and information was well received. Fibromyalgia awareness is there, but advocating for specific needs is the important next step in this process. 

According to the Centers for Disease Control and Prevention (CDC), Fibromyalgia affects more than 4 million US adults or 2-4% of the adult population. Women and men of all ages, including children, have been diagnosed with Fibromyalgia. These are only an estimate in numbers because reliable figures aren’t available. The precise pathological mechanism of Fibromyalgia is not well understood and even after getting a diagnosis, clinicians largely rely on trial and error to find appropriate treatments. One study found that Fibromyalgia patients use 182 unique types of treatments. 

Fibromyalgia may also impose a greater burden than some other chronic illnesses. A comparative study showed that Fibromyalgia subjects were characterized by the greatest disease burden with more comorbidities and pain-related medications, poorer health status, function, sleep, lower productivity, and higher costs. Several studies have examined the direct (medical care) and indirect (productivity loss, changes in employment status, disability, family assistance) costs of Fibromyalgia. Cost per patient ranges from about $2,000 to over $10,000 a year depending on severity. People with more severe Fibromyalgia (65% in one study) averaged over $10,000 a year in direct medical costs.

The International Support Fibromyalgia Network (ISFN) is partnering with patient organizations, advocates, health professionals and legislators around the country to request that the National Institutes of Health (NIH) provide a sustained increase in Fibromyalgia specific research funding for pathophysiology, epidemiology, diagnostic tools, gene-gene, and biomarkers.

Recently, a Senate spending panel released a draft 2020 spending bill containing a $3 billion increase for the NIH that would bring the agency’s total budget to $42.1 billion. We applaud the increase in funding, but as it stands our NIH-projected funding for Fibromyalgia in 2020 is $12 million which will be a decrease from $14 million. The Fibromyalgia community is requesting an increase in budget spend for Fibromyalgia to $20 million. We believe that $20 million is a drop in the bucket for something that experts believe could have the potential to help with complex chronic pain conditions. 

Please, join us in calling on the NIH to increase spending on this important research and sign this petition!