Patient Worthy was a media partner at this year’s NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare Disorders (NORD) that centers on the rare disease patient experience and features a variety of speakers, patient stories, and educational sessions that are designed to help the rare disease community.
This year’s event was entirely virtual in light of the ongoing COVID-19 pandemic. We had the opportunity to attend several of the info sessions at the forum. One of the ones that we checked out was titled “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access.” The session focused on the medical field and the impacts of racial biases that continue to affect access to care today.
Historically the medical profession in the US has not treated people of different racial backgrounds equally, and Black Americans, in particular, have been subjected to discrimination, neglect, and mistreatment that has contributed to worse health outcomes. This history has also led to a culture of skepticism and mistrust in the Black community towards the health system. These disparities can be even worse among people with disabilities or chronic illnesses.
Speakers for this session included:
- Connie Montgomery, Patient & Family Advisor, Medical University of South Carolina; National Hemophilia Foundation
- Lara Bloom, President and CEO, Ehlers-Danlos Society
- Dionne Stalling, Founder and Executive Director, Rare and Black
Connie is a Black woman living with two rare diseases: factor VII deficiency and pemphigus vulgaris. Her life was greatly affected by years of dealing with symptoms but having no official diagnosis.
“For many years I was not properly diagnosed nor did I receive treatment even though all of the symptoms were there. It took a car accident in my mid thirties before I received a proper diagnosis, even though I was a healthcare professional.”
As a child, she recalls dealing with severe bleeds that disrupted her education. Connie and her mother both tried to discuss her symptoms with doctors, but they were ignored. Unfortunately, racial bias means that many white medical professionals are less likely to take the concerns of Black people seriously, especially Black women.
A game-changer for Connie was attending a conference on hemophilia and bleeding disorders, where she learned more about her disease and how to self-advocate, which is a vital skill for any rare disease patient.
Dionne, also a Black woman, lives with four rare diagnoses in total, but she says that the most impactful is primary immunodeficiency. Her life was plagued by infections and other diseases. Dionne also developed short bowel syndrome because she had to get portions of intestine removed to stop infections. She was only officially diagnosed with primary immunodeficiency in 2014.
“I felt a sense of relief, but also anger. It was really just overwhelming.”
Lara is white but also experienced diagnostic delays, an all-too-common challenge for rare disease patients. She was diagnosed at age 22 even though she had experienced Ehlers-Danlos syndrome symptoms since she was 11 years old.
“My wrists fractured multiple times because the tissues around the bone were so fragile and I had to get them fused. This was all before my diagnosis. I was told I was unlucky, accident-prone, and even a hypochondriac.”
Lara highlights that modern health systems are not configured for rare or chronic diseases, and are instead geared toward resolving acute illness and disease quickly, not managing long-term symptoms. She lives in the UK and even though that country has one of the most widely-respected health systems in the world, experts on rare disorders are uncommon, and rare disease patients are neglected.
Dionne talks about the fact that while socio-economic factors play a role in health equity, proximity to care is a factor as well. Even though she lives less than a mile from a hospital she has to travel 26 miles to get the treatment she needs; she passes four other hospitals along the way. Unfortunately, this is a widespread occurrence for rare disease patients.
Dionne was motivated to start Rare and Black after her own experiences attempting to navigate the health system in the US. She also volunteers for the Immune Deficiency Foundation.
While there is a lot that needs to be done to create a fully equitable health system that is free of bias, inequality, and discrimination, there is work happening now that is taking steps in that direction such as Project ECHO, a guided practice model for health professionals that keeps them educated and informed in order to reduce the impacts of health disparities in care and access. Click here to learn more about Project ECHO for EDS.
