The executive director of Hemophilia Foundation Southern California discussed issues with minorities accessing care for rare diseases and strategies to mitigate them.
"We need to be able to bring these clinical trials to the community... how can we create something that is available and accessible to these populations? ...there's a lot of street medicine teams that we've done in the past with my previous organization, and it was very effective to just provide primary care. Let's take that at another level and take it to clinical trials education and bring the clinical trials to the patients.”
While more cell and gene therapies are coming to the market for rare diseases, a main issue that remains is getting underrepresented populations access to these therapies and representation in clinical trials, which already struggle with recruitment in diseases with small populations. A session at the National Organization for Rare Disorders (NORD) Breakthrough Summit, held October 17-18 in Washington DC, focused on these issues and improving diversity, equality, and inclusion (DE&I).
CGTLive spoke with Rigoberto Garcia, MPH, executive director, Hemophilia Foundation Southern California, to learn more about the work he has done in making health care accessible to underserved communities. He discussed barriers to care such as distance and language and strategies he has used including interpretation and street medicine to overcome these barriers. He also discussed the need for education for both patients and clinicians to bridge cultural gaps and possible stigmas about new therapies and clinical trials.