66. Empowering Patients: Autoimmune Advocacy and Research

In this episode, Reggie Barnes, Director of Patient Partnership for the Autoimmune Registry, shares his personal journey of being diagnosed with a rare autoimmune condition called GAD65 autoimmune encephalitis, which causes debilitating inflammation in the brain and spinal cord, leading to seizures and other disabling symptoms. 8% of the U.S. population is living with an autoimmune condition, and 80% of those with autoimmune conditions are women. The conversation explores the marred history of clinical trial participation for black and brown Americans. This history emphasizes the importance of accountability, patient protections, and trusted sources of information. The Autoimmune Registry aims to include diverse populations of people, especially people with autoimmune conditions, in clinical trials so that their findings can apply to all people equitably.  

Listeners will gain valuable insights into: 

• The experience of living with an autoimmune condition 

• The significance of patient participation in autoimmune disease research. 

• Addressing mistrust in medical research within minority communities and the need for greater engagement in healthcare research. 

• The critical role of patient advocacy in improving healthcare outcomes. 

Resources: 

The Autoimmune Registry: The Autoimmune Registry 

View the Autoimmune Registry's clinical trial opportunities: https://www.autoimmuneregistry.org/clinical-trials 

NIH Office of Autoimmune Disease Research:  About the Office of Autoimmune Disease Research (OADR-ORWH) (nih.gov) 

  Reggie Barnes Bio: 

• Reggie is the Director of Patient Partnership for the Autoimmune Registry, a 501c3 nonprofit with the goal of documenting over 150 auto-immune diseases affecting 8% of people in the United States. They empower patients, facilitate research, and collaborate with other advocacy groups.  

• Reggie has a rare autoimmune condition called GAD65 autoimmune encephalitis, which causes debilitating inflammation in the brain and spinal cord, leading to seizures and other disabling symptoms. Those affected describe it as feeling like their brain is on fire. It affects 20,000 people in the United States and wasn't classified as a condition until 2008. 

• Reggie was homebound for fifteen years before finding a doctor who could diagnose his condition. This experience led him to be an active advocate with the Autoimmune Registry to improve healthcare quality and patient safety for people with autoimmune conditions.