There’s No Checking a Box on Black History or Rare Diseases

We’re a month past Black History Month, and many people think they’ve already checked a box and can move on, but the conversation doesn’t and shouldn’t end in February.?

This year, for 29 days, the contributions of Black Americans to the United States were celebrated and Black leaders were honored. When Dr. Carter G. Woodson conceived of Negro History Month, he knew it was important for there to be a month to recognize the achievements of Black Americans, but he had hoped that those achievements would be acknowledged beyond the confines of February. Although many continue to celebrate Black history, too many organizations feel they have successfully reached their quota of Black recognition for the year.?

For rare disease patients whose awareness month coincides with Black History Month, checking a box isn’t an option. These patients must live with conditions that go underfunded and misdiagnosed for 365 – or 366 – days each year.??

While it may be a coincidence the two causes share the month of February, their overlap uniquely sheds light on the disproportionate effect rare diseases have on the Black community. This intersection allows us to reflect on why the rare disease experiences of one population differ so markedly from another and how these disparities came to be. It also allows us to push for the policy measures necessary for Black Americans to continue to make history.???

Rare diseases lack sufficient research for the diagnosis and treatment of the one in 10 Americans who suffer from these conditions. Further, most of the research conducted falls short of including representation of those most severely affected by rare diseases. Although 38% of the population is comprised of people of color, they are only represented in 16% of all clinical research. And for Black Americans, only about 8% participate in clinical trials. Many medical professionals incorrectly assume these populations cannot or will not participate in clinical studies, thereby limiting the evidence-based knowledge healthcare professionals have available to accurately diagnose and treat their diseases.??

For Black people, lack of access is compounded by a well-founded, deep-rooted mistrust of medical research, which is only exacerbated by their concerns being ignored or diseases being misdiagnosed multiple times before getting an accurate diagnosis. It takes, on average, 5-7 years longer for Black and Brown patients to receive a rare disease diagnosis as compared with white patients. While medical mistrust is a barrier, the most cited reason Black patients give for not participating in clinical trials is that no one asks them.??

In this society, we pride ourselves on practicing evidence-based medicine. However, improving health outcomes for all depends on including every population in the creation of that evidence, particularly those most impacted by the condition being studied. We know what becomes evidence depends on who is asking the questions and who they are asking. Without this level of evidence-based medicine for all, patients and their families living with rare diseases do not benefit from potentially life-saving therapeutics.?

For a healthier, more just society, we must embrace a renewed sense of purpose, and celebrate Black history and promote rare disease awareness beyond February. As we’ve learned from the Civil Rights Movement, lasting impact is driven by policies –?policies that will incentivize research organizations to ensure their studies are representative of the general population and promote the value of inclusion in the creation of evidence. This will improve the standard of care for all.

The 2023 omnibus spending bill enacted this year (Public Law 117-328) requires diversity action plans for clinical trials used by the Food and Drug Administration to decide whether drugs are safe and effective. This is an important first step. We need researchers to not only submit a diversity plan but also put the plan into action.

The onus is on us to continue this progress. Our rights, our health, and our economy are on the line at the polls this fall, and the candidates we elect will be instrumental in hearing and enacting policy changes that benefit society.

Our collective efforts today will both honor the legacy of those who came before us and pave the way for a more equitable and healthy future for all. Through advocacy, policy, and democracy, we will create a healthier tomorrow while making history today – without artificially checking any boxes.