Confronting Racial and Ethnic Disparities in Rare Disease Care
Rare advocates are shining a light on inequities in healthcare systems. Here’s what they’ve learned and how we all can help.
A landmark report from the Institute of Medicine titled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care'' raised awareness of inequities and the need to eliminate them. They define disparity as “racial or ethnic differences in the quality of health care that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention.” The report found that “racial and ethnic minorities tend to receive a lower quality of health care than non-minorities, even when access related factors, such as patients’ insurance status and income, are controlled.”
When the U.S. Department of Health and Human Services (HHS) released its annual report on this topic, they found: “health care quality and access are suboptimal, especially for minority and low-income groups.” In practice, the disparity shows up as inherent bias, stereotyping, prejudice and clinician anxiety/uncertainty. This exists in the context of broader, systemic inequality, and they’re all behaviors associated with poor health outcomes.
“…Whenever I got to the hospital with my mom, they always either blamed her for my condition, saying it must have been something she did, or they just discounted us.”
Of course, you don’t have to rely on reports and metrics to understand that this is a devastating issue. Just talk with patients and advocates who have experienced inequity firsthand. Nadia Bodkin, Pharm.D., M.S., is the co-founder of the Rare Advocacy Movement. She is a seasoned rare disease experience professional who was born with three genetic rare conditions. Growing up, she recalls many visits to the hospital where she and her mother weren’t taken seriously. “My mom was just trying to do her best,” Nadia remembers. “As a single mother, a black woman, taking care of two kids on her own and one of them is always sick…Whenever I got to the hospital with my mom, they always either blamed her for my condition, saying it must have been something she did, or they just discounted us.”
Nadia recalls her mom saying, ‘Look, they don’t believe us; you’re going to have to become a doctor on your own if you want to figure this out.’ As a result, Nadia pursued pharmacy school and an expedited doctoral program so she could become a healthcare expert herself. “That’s when I saw both worlds,” Nadia says. As a student, Nadia continued to experience symptoms from her conditions. Once, while studying for final exams with her classmates, she suffered a seizure. Her friends, who were white, rushed her to the hospital, where they stayed with her while she received treatment. The experience was very different from the treatment she received with her mother. “ I got the best care,” she remembers. “Everyone believed me; it was like night and day.”
This experience, one of many, fueled her professional work and advocacy. The Rare Advocacy Movement (RAM) is the first community-based network of professional activists dedicated to protecting the interests of the global community of people living with rare conditions and their caregivers. Part of the organization’s work includes un-learning programs designed to help medical professionals examine their internal biases and create more equitable systems from the inside out.
Perhaps one of the spaces that needs this most is the rare disease ecosystem, where patients often present with confusing symptoms that don’t fit neatly inside a diagnosis and where conventional doctors are more inclined to dismiss them. “I thought [rare disease] would actually unite us,” Nadia says, “because we’ve all experienced doctors saying ‘oh, she’s exaggerating’ and we’ve all been written off by the healthcare field.”
But inequity exists here too, and it’s time to come together as a community and change that.
Here are some ways the rare disease community is working to make care more equitable for all:
1. Increasing awareness. Both on the local and national levels, organizations are becoming more aware of the disparities in healthcare and working to change policies to better serve all patients. The CDC and other federal agencies are focusing on reducing disparities across populations, including based on race and ethnicity, age, gender, socioeconomic status, sexual identity, disability, and citizenship status.
2. Removing barriers to care. Whether it’s financial barriers to rare treatments, transportation barriers, geographic access to care, patient education, or communication barriers, healthcare providers can lower the hurdles keeping their patients from the best care available. If you need help accessing care, ask your provider for resources or speak with your local hospital’s patient advocate or ombudsman. Many large healthcare organizations have nonprofit foundations associated with them, which can also offer help.
3. Unlearning. Organizations like RAM connect healthcare professionals with unlearning programs, which offer safe, anonymous spaces for experts to examine internal biases and hear the perspectives, experiences, and insights from communities of color. To learn more and get involved, visit rareadvocacymovement.com.
Above all, positive changes will come with communication and a willingness to shift the balance. “Even the most well-meaning doctors who want to do the right thing, sometimes they don’t know how to communicate with their patients,” Nadia says. As a community, both patients and doctors benefit from slowing down, listening, and honoring each individual’s story and experiences.
To connect with rare disease experts and learn more about treatments and clinical trials that you might qualify for, visit the Know Rare study finder.
