Rare Disease and the Fight for Health Equity
Long before the COVID-19 pandemic, Black people had a strained relationship with medicine and overall healthcare. In many Black communities, if you are sick, you don’t go to the doctor. You take cough syrup or an aspirin and go lay down. Unless you have a sore throat, then you gargle warm salt water, and then you go lay down. If your symptoms don’t subside, you take your aches and pains to church, and you have the pastor pray it away. I’m sure there are other variations, but these are common approaches to managing health within Black communities. Imagine approaching your care just like this, but you have a rare disease — for example, a rare bleeding disorder like hemophilia where a person’s blood doesn’t clot properly. Headaches cannot be resolved simply by taking a nap. A person with hemophilia who has sustained a head injury must take additional measures such as administering a dose (or doses) of medication or seeking immediate medical attention. Honestly, any person who sustains a head injury should take the necessary steps to ensure that they are okay. However, this tragic scenario details some of the additional steps you may liklely take when you are a person living with a rare disease. You simply cannot afford to take a haphazard approach to your care because your life depends on it.
By definition, in the U.S., rare diseases are disorders that affect fewer than 200,000 people. Many are genetically inherited conditions that are present at birth, others may appear over time, but both are generally considered to be chronic conditions. Currently, there are estimated to be about 7,000 known rare diseases that impact between 25–30 million people living in the U.S. That may sound like a fairly high number, but it is still relatively low compared to the 18.2 million adults age 20 and older with just heart disease. These conditions often gain notoriety because they can be challenging to diagnose and even harder to treat depending upon the disease’s severity and rarity. Over the years, advancements in medicine have made some rare diseases slightly more manageable, but barriers still exist such as health insurance coverage and little to no access to specialty care. Communities of color are faced with an additional set of barriers, which often play a critical role in diagnosis and overall disease management.
Diagnoses operate as the catalyst to disease management. Without a timely diagnosis, patients risk losing access to health education resources, treatment plans and other services. It also impacts treatment adherence, disease progression, prognosis, and overall health maintenance.
Diagnosis & Disease Management
In 1896, the U.S. Supreme Court ruled in the landmark case, Plessy v. Ferguson, that racially segregated public facilities were legal, as long as the facilities for Blacks were equal to the ones frequented by Whites, thus establishing the doctrine of “separate but equal.” The ruling made it legal for states to pass laws that prohibited Blacks and Whites from sharing public facilities such as but not limited to schools, buses, neighborhoods, restaurants, movie theaters, and hotels. In large parts of the South, states enacted Jim Crow laws cementing the U.S. Supreme Court’s ruling in Plessy. This move also led to the use of different hospitals and healthcare providers. States and local municipalities created separate healthcare systems to treat Black patients. While separate but equal was federal policy at the time, nothing that was separate was equal. In southern states that experienced harsher economic conditions, many risked getting substandard care or none at all. Segregated healthcare systems and negative health outcomes associated with such systems served as the foundation of care for Black Americans for generations to come. This also played a significant role in the handling of rare diseases within Black communities. In addition to enduring inequitable care and poor health outcomes due to state and federal mandates, rare diseases often cause other issues to arise, such as psychosocial implications resulting from low prevalence, complex genetic etiology, and the potential for future generations to inherit the condition. While it is widely accepted today that rare diseases are present within minority populations, not long ago, systemic racism and discriminatory practices in medicine and research led many providers to believe that Black people could not be diagnosed with certain conditions, including rare diseases. Instead, Black patients received a diagnosis of pseudo or false diagnoses, risking delayed access to treatment, worsening of the undiagnosed condition and possibly overall health.
Bias isn’t the only factor that serves as a barrier to care; ineffective testing plays a key role as well. Some of the tests used to diagnose rare diseases do not account for the differences that race and ethnicity present, resulting in missed or delayed diagnosis. Even when minority patients receive a proper diagnosis, many have worse health outcomes when compared to non-minority patients with the same disorder. Various explanations can be given for this phenomenon, of course, race and ethnicity, but also genetics. Another explanation could be treatment and how each body reacts to it, which is why it is essential for communities of color to participate in clinical trials so that researchers can assess the differences in responses to certain treatments before coming to market.
So, with all of these present-day issues, what can you do to protect yourselves and others? Well, you’re reading this article, which is evidence you are curious about rare diseases and their impact on communities of color. Naturally, the next step would be to educate yourself more. I invite you to check out my website at RareMelanin.com for more information, but don’t stop there. I encourage you to learn more. Your journey to understanding rare diseases is a never-ending process. However, the most important thing you can do for yourself is to put your phone, laptop, tablet, desktop away and stop trying to self-diagnose or self-manage your disorder or someone else’s. Oh, did you think I forgot people did this too? Call your doctor and set up an appointment to address any concerns you may have. If you do not have a doctor, check with your health insurance provider to see who is in your network and set up a consultation. If you do not have health insurance, check out healthcare.gov, you may be able to find an affordable plan that fits your particular needs or speak with your employer if they offer coverage. You should also take a look at your state Medicaid program to see if you are eligible. After you find a trusted healthcare provider be sure to come back and read more because the fight for health equity never stops.
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Disclaimer: This article/blog/website does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. You should never ignore professional medical advice in seeking treatment because of something you have read on RareMelanin.com or its blogsite (via third-party service). If you think you may be experiencing a medical emergency, call 911 immediately.
