HELP SAVE THE USC DYSAUTONOMIA CLINIC!
We're collecting 2000 signatures to let USC Keck know it is unacceptable for an academic medical center to abandon hundreds of dysautonomia patients. Please add your voice to this important issue, whether you have been a patient at USC Keck or not.

March 2020

via email
Thomas Jackiewicz, MPH
Chief Executive Officer
Keck Medicine of USC

Dear Mr. Jackiewicz,

The undersigned patients, caregivers and medical professionals are writing to you regarding USC Keck’s unfortunate decision to close the USC Dysautonomia Clinic as of March 1, 2020 with no explanation to the hundreds of Los Angeles area patients served by the clinic.

Over 600 USC Keck Dysautonomia Clinic patients (and an additional 200 on the wait list) that were undergoing ongoing treatment are now left without proper care for disabling autonomic nervous system disorders they suffer from. USC Keck failed to provide alternative sources of medical care for these patients upon closure of the clinic. Many patients who have contacted other USC Keck clinicians for follow up care have been turned away. This egregious abandonment of an entire patient community is unacceptable and must be remedied by USC Keck as soon as possible.

The USC Dysautonomia Clinic provided valuable care that greatly improved the quality of life of hundreds of patients with disabling autonomic disorders such as postural orthostatic tachycardia syndrome, neurocardiogenic syncope, autoimmune autonomic ganglionopathy, pure autonomic failure and multiple system atrophy. The only other clinic in southern California that provides dysautonomia specialty care, the Scripps Clinic in La Jolla, is at capacity with nearly 200 people on the wait list, and is unable to take on additional patients. This leaves USC Keck’s patient population without access to a clinician to properly treat their ongoing serious health issues, manage their medications, or make referrals to relevant specialists.

We are urging USC to re-open the USC Dysautonomia Clinic immediately. There is an overwhelming need for care for hundreds of patients with debilitating autonomic nervous system disorders in the Los Angeles area. While all medical facilities are in a period of dramatic change due to the COVID-19 pandemic at this time, USC should provide telehealth services (phone, email or video consults) for existing Dysautonomia Clinic patients until in-person visits are available.

Autonomic nervous system disorders, collectively known as dysautonomia, are not well known, but they are not rare. In fact, dysautonomia impacts over 70 million people worldwide, with just one form of dysautonomia, postural orthostatic tachycardia syndrome, impacting an estimated 1-3 million Americans. This translates to thousands of patients in Los Angeles County alone. Autonomic disorders are serious, life-altering, and in some cases, life-limiting, conditions that are not to be taken lightly. Living with a form of dysautonomia is devastating for most patients, causing disability and disruptions to all aspects of life, including work, school, social relationships, and mobility. To abruptly leave such patients with no medical care is contrary to everything USC Keck stands for.

As one of the leading hospitals in the region, and an academic medical center responsible for educating future medical professionals, USC should have a robust clinical, research and educational program focused on autonomic disorders.

We urge you to meet with representatives from Dysautonomia International to discuss what can be done to re-open the USC Dysautonomia Clinic as soon as possible, and in the meanwhile, to provide transitional medical care for the 600 patients the clinic was serving.

Sincerely,