We are pleased to announce that Dysautonomia International’s July 2017 Lobby Day and October 2017 Congressional Briefing resulted in a major Congressional victory for POTS research funding!

For the first time, Congress has directed the National Institutes of Health to “stimulate the field” of POTS research by adopting the following language in the Appropriations Committee Bill Report attached to the FY 2018 Omnibus Bill, which became law on March 23, 2018:

Postural Orthostatic Tachycardia Syndrome [POTS]. — With an estimated 1,000,000 to 3,000,000 Americans suffering from POTS, a neurological disorder that affects mostly adolescent and adult women, there are no effective treatments to address this often misdiagnosed and debilitating condition. The level of disability resulting from POTS can be similar to that occurring in multiple sclerosis and congestive heart failure, but little research funding has been dedicated to date to improving understanding of POTS. Due to the lack of effective treatments, many patients are unable to attend school or work, resulting in significant impacts to the U.S. economy. The World Health Organization recently approved the first unique ICD code for POTS, which when implemented, will hopefully enable more precise epidemiological research on the disease. The Committee expects NHLBI and NINDS to work with stakeholders to stimulate the field and develop strategies that will increase our understanding of POTS and lead to effective treatments.

Dysautonomia International requested the inclusion of this language in the Report, and it was included with the support of Senator Patty Murray (D-WA) and Senator Roy Blunt (R-MO). We would like to thank Senators Murray and Blunt for their bi-partisan leadership on this issue, as well as Representative Brian Fitzpatrick (R-PA) and Seth Moulton (D-MA) for their co-sponsorship of the October 2017 Congressional Briefing.

We would also like to thank all of you who participated in the grassroots effort to meet with your Congressional offices during Dysautonomia Lobby and those of you who persuaded your Congressional offices to attend the October briefing.

Dysautonomia International Board members recently met with NIH leaders to discuss the current state of POTS research and the overall dysautonomia patient community’s needs. We have additional meetings planned this spring to discuss how NIH can “stimulate the field” of POTS research, and “develop strategies that will increase our understanding of POTS and lead to effective treatments.” Our goals is to obtain increased POTS and autonomic disorders research funding from the NIH, which is very much needed.

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