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Fighting Injustice in Health Care for Black Women and Diverse Rare Disease Patients

Black patients have endured years of injustice in health care – laid bare by the current COVID-19 pandemic – which will continue to pervade our society long after the virus has receded unless we act now.  Blacks are five times more likely than Whites to be hospitalized or die from the coronavirus. The experience of Black patients struck by COVID-19 mirrors the experience Black patients face throughout the health care system every day of their lives.  As Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases since 1984, stated during a White House briefing: “Health disparities have always existed for the African American community … We will get over coronavirus, but there will still be health disparities which we really need to address in the African American community.” 

It is widely known among health practitioners that Black women are highly susceptible to a range of poor health outcomes and maternal deaths, largely due to lack of access to quality health care. Black women are seven times more likely to die from breast cancer and three times more likely to die from pregnancy-related causes. 

Black women have a higher risk of cardiovascular disease, cancer, diabetes, and other chronic and rare disease conditions. Research also suggests that Black women are more exposed to stress and worry over issues related to racism, income, and the general needs of their households, which can worsen their susceptibility to chronic health conditions, regardless of income and education. Nearly 68 percent of Black women are the sole breadwinner in their family, and when they fall ill, the entire family and community suffers. 

At the same time, there is a lesser known, yet just as urgent crisis in race and health. People of color with rare diseases are being left behind, facing potentially deadly barriers in diagnosis, treatment, and representation in research trials. Though individual rare diseases don’t receive much public attention, roughly 30 million Americans—one in ten—live with a rare disease. Patients with a rare disease must overcome extensive barriers to get an accurate diagnosis or receive quality care. It can take an average of five years to reach a correct diagnosis. Even when a diagnosis is reached, only 10 percent of rare diseases have an FDA-approved treatment. Patients also face difficulties finding a knowledgeable medical professional to monitor their care, as most doctors are not trained in rare diseases, and those who are may practice far from a patient’s home. 

These challenges are compounded for patients of color with rare diseases.  They are less likely to have access to health care and rare disease experts, and face longer wait times to get diagnosis and treatment. Rare diseases like lupus, sarcoidosis, and sickle cell anemia disproportionately impact populations of color, yet they are underrepresented in genetic studies. As genetic abnormalities underlie many rare diseases, leaving people of color out of genetic studies creates significant knowledge gaps in their care. We know there is no biological or genetic determinant for race.

We also know from experience that many patients of color are not asked by their doctors to take part in clinical trials because of assumptions physicians make about compliance, ability to pay, and the presence of comorbid conditions that confound studies. Because of where and how clinical trials take place, non-medical barriers to health for lower-income patients such as lack of transportation, unaffordable childcare, and inability to get time off from work may be insurmountable for participation. Access to treatment for people of color with rare diseases can also be problematic. Thousands of sickle-cell patients have reported that when they ask for medication, such as opioids to control pain, they are routinely dismissed as drug seekers.  

Among the many battles we need to fight in the overall war on health disparities, my organization – the Black Women’s Health Imperative (BWHI) – is leading the charge on two fronts: Empowering black women to overcome barriers to health, and ensuring that patients with a rare disease are treated fairly and equally. I am proud that my organization is committed to making a difference in these critical areas of race and health. 

First, BWHI, together with the National Coalition of 100 Black Women, created Our Health, Our Community, a movement to mobilize, support and advocate for Black women and their families to create healthy, resilient Black communities. This holistic, asset-based movement is designed to equip Black women with the knowledge, resources, and tools to advance the health and prosperity of women and families while also addressing systemic inequities and community and individual barriers to better health for Black women. Our Health, Our Community includes educational webinars in Metro Washington, D.C., Chattanooga, Tenn., Charlotte, N.C., and Sacramento, Calif.; a resource guide, “Surviving and Thriving in America: a Guide for Black Women” with tools and best practices to equip Black women with the skills to become engaged in local organizing efforts to raise issues with elected officials.

Second, BWHI founded and is leading a new national Rare Disease Diversity Coalition.  The Rare Disease Diversity Coalition is bringing together all voices – top rare disease experts, health and diversity advocates, and rare disease industry leaders. The Coalition is identifying and advocating for evidence-based methods to ease the disproportionate burden of rare diseases on communities of color.

Together, with my organization and our partners throughout the nation, we are empowering Black women to live healthier lives and lead change in their families and communities.  We are also  developing concrete recommendations to be delivered this year to decision-makers with the power to change the healthcare system for all people of color with rare diseases. To follow our progress on both of these important initiatives, learn more about our work and join us. Visit www.bwhi.org.

Linda Blount is the founder and CEO of Black Women’s Health Imperative, which recently launched the Our Health, Our Community movement with the National Coalition of 100 Black Women, and the Rare Disease Diversity Coalition sponsored by Retrophin pharmaceutical company.

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