1. United States
2. Pa.
3. Letter

Our family is deeply impacted by dysautonomia. I am writing to ask for your support for $2 million at the CDC to establish and implement a provider education campaign for postural orthostatic tachycardia syndrome (POTS) and other other forms of dysautonomia in the FY 2025 Labor, Health and Human Services, Education and Related Agencies Appropriations Act. There are an estimated 40 million Americans with dysautonomia, including an estimated 6 million living with postural orthostatic tachycardia syndrome (POTS). The number of Americans impacted by POTS and other forms of dysautonomia is growing. In fact, researchers have found that 67% of Long COVID patients are developing POTS and other forms of post-viral dysautonomia. Notably, over 90% of POTS patients are female, with the most common age of onset at the young age of 14. POTS and other forms of dysautonomia can be devastating for the patient and their family. Despite the high prevalence of POTS and other forms of dysautonomia, these may be the most misdiagnosed conditions of our time. Patients typically endure years of diagnostic delay and misdiagnosis. Once diagnosed, patients have a difficult time accessing care as there is a severe shortage of board-certified autonomic specialists who are best trained to treat these patients. There are only 56 board-certified autonomic disorders specialists in the US, and 28 states do not even have a board-certified specialist (Alaska, Arizona, Arkansas, Colorado, Connecticut, Delaware, Hawaii, Idaho, Indiana, Kentucky, Louisiana, Maine, Michigan, Montana, Nevada, New Hampshire, New Jersey, New Mexico, North Carolina, North Dakota, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Dakota, Vermont, Wisconsin, and Wyoming, as well as Puerto Rico). More than half of POTS patients are traveling more than 100 miles from home to receive POTS specialty care and more than 20% of POTS patients are traveling more than 500 miles, with low-income and rural patients particularly underserved. People with other forms of dysautonomia are similarly impacted. This combination of diagnostic difficulties and lack of an adequate provider network to treat the growing POTS and dysautonomia patient population, emphasizes the critical need for investments in the clinical and research workforce, so patients have access to a timely diagnosis and appropriate medical treatment, to give them the best chance at improving their quality of life. I appreciate your consideration of this important issue that impacts our family.