December 2022

Dear Representative Clark:

I am writing to you as one of your constituents on an important matter.

The National Institute of Health (NIH) received over $45 billion from Congress this year for medical research. Yet less than $2 million a year (or 0.004%) is directed toward funding research on a chronic condition called postural orthostatic tachycardia syndrome (POTS) that more than 3 million other Americans suffer from, including many here in Massachusetts.

POTS is one of the most common autonomic nervous system disorders. POTS can cause lightheadedness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.

For many patients, waking up every morning with an overwhelming combination of symptoms that prevent you going to school or work is commonplace. The simplest of tasks, including getting out of bed and dressing for the day are unachievable, and the quality of life significantly declines. POTS typically takes years to diagnose due to a lack of awareness in the medical community.

As POTS patients, caregivers, and advocates on behalf of people with POTS, we are asking for your help. According to a recent report issued by the leading POTS experts from around the world, including several Harvard experts here in Massachusetts, the scientific community needs $10 million dedicated for POTS to accelerate diagnosis and potential treatment options for patients. And, despite repeated directives from Congress in the annual appropriations bills, the NIH has yet to increase funding for POTS. Therefore, I request that you include the following funding and language in the end of year funding bill currently being negotiated. 

Postural Orthostatic Tachycardia Syndrome [POTS] – POTS is one of the most common forms of dysautonomia, estimated to impact 1 to 3 million Americans prior to the COVID-19 pandemic. Recent research suggests that 67% of individuals – an estimated 38 million Americans – experiencing post-acute sequelae of SARS-COV-2 [PASC] are developing moderate to severe dysautonomia, most commonly presenting as POTS. Due to the sudden increase in the patient population affected by this debilitating disorder, Congress includes an increase of $10,000,000 for NIH to support new research on POTS, to address the gaps in current knowledge identified during the NIH's July 2019 workshop, Postural Orthostatic Tachycardia Syndrome (POTS): State of the Science, Clinical Care, and Research. We strongly encourage the NIH to establish a multi-institute Notice of Special Interest to spur additional needed research addressing the identified gaps in knowledge.

Thank you for your time and consideration.

Sincerely,