Sickle Cell Disease (SCD) is a hereditary blood disorder that is caused by an abnormality in the red blood cells. It is most prominent in the black/brown communities. In the United States, African Americans account for 97 percent, or over 100,000 sufferers, with 1 in every 365 born with sickle cell disease and 1 in every 13 born with the sickle cell trait. The Hispanic community is second, with 1 in every 16,000 affected by the disease.
In 2016, I wrote an article emphasizing the lack of care in this region for sickle cell disease. Little did I know that all of our prayers, hard work, and partnering with the medical community would lead to a blessing in the form of an adult treatment facility in Louisville. The Norton Cancer Institute opened its doors to the adult sickle cell community on April 17, 2017. For the first time since the close of General Hospital in 1983, sufferers 19 years of age and older could get treatment in Kentucky. For 34 years they traveled to Cincinnati or Vanderbilt University in Nashville for care. Many were not able to make the journey, so self-medicating with street drugs or drugs prescribed to someone else was not uncommon, and occasionally lead to premature deaths.
Additionally, 2019 produced the first drug specifically designed for the treatment of sickle cell disease. Researchers are performing stem cell research with amazing results and moving closer to a cure. Locally, the Sickle Cell Association of Kentuckiana, the pediatric and adult sickle cell clinics have partnered to transition young adults to their next level of care. This is especially important because it encourages the teens to become knowledgeable of their disease and the availability of treatments. Now that they have the option of staying here in the area to continue their education, these teens learn to control their medication intake, the types of medication that works best for their form of sickle cell, and gives them the opportunity to mentor the younger patients coming behind them. Teaching basic life skills was a foreign concept, because in prior years the sickle cell patient was not expected to live long enough to reach adulthood.
The process most damaging to a sickle cell patient is known as a ‘crisis.’ A crisis occurs when the cells change to a sickle shape, stick together, and clot in the arteries and veins. A crisis is extremely painful and can cause brain strokes, paralysis, frequent blood transfusions, extended hospital stays, and restriction of the normal growth pattern. It is awesome to think that the future of sickle cell involves the inability of the cells to stick together, all but eliminating the ‘crisis.’
Now that the medical community has gotten onboard and are actively seeking a cure for sickle cell disease, the next hurdle is to convince the community that the Community Based Organization (CBO) supporting the sickle cell patients need funding. The Sickle Cell Association of Kentuckiana (SCAK) is the only organization in the State of Kentucky providing physical, financial, and psychological support to the sickle cell patient and their families. Sickle cell disease is a family disease. It directly affects every member of the family. SCAK receives no local, state or federal funding. Much of our ability to support the sickle cell community comes from the good graces of small organizations, family members, and fundraisers, but this has to change.
Sickle Cell is the only disease specifically identified as the killer of African American children. On occasion, we do see patients of another ethnicity, but for the most part, African Americans are the majority of sufferers. In the Kentucky area there are two major Universities known for its ‘Medical Meccas’ made up of specialty and sports doctors, there are championship sports teams, international industries, betting arenas, and horse racing. In addition, there are all of the components that make up large charitable and philanthropy organizations, but none of these reaches out to support the sickle cell community.
The Association struggles daily to provide transportation costs to and from hospital/appointment visits, food, rental/utility payments, medication co-pays, basic necessities, and funeral expenses. With the onset of cold weather, warm clothing and shoes become a priority to decrease the chances of developing pneumonia, and another hospital stay. Right now, all of our major concerns turn to COVID 19. The community has been blessed to have not had a fatality or serious hospital stay due to COVID, and we keep our fingers crossed that does not change.
We need our professional athletes, entertainers, entrepreneurs, churches, fraternities, sororities, social groups, and corporations to step up and support those living with sickle cell. These are your children, parents, siblings, family and friends. With the Black Lives Matters movement came the insertion of diversity, equity, and inclusion professionals in the major corporations around the world, but that does not apply to sickle cell disease. As a small non-profit we are used to the word ‘No,’ but why should we continue to be treated like sickle cell lives do not matter. Sickle cell is the oldest disease known to humans. For over 400 years people of color have suffered and died from this horrific disease with no recognition or support. It is time that our governing bodies and tax payers step up and demand the same services provided to other medical issues.
Lastly, as African Americans, it is your responsibility to know if you are a carrier of the sickle cell trait. Only the mating of two trait carriers can produce a child with the disease. He/She will live their entire life suffering from this debilitating disease. Testing requires no more than a blood test, a simple prick of the finger. The cost is free, because it is considered ‘preventive medicine.’ If you are not sure, get the test. No child should have to go through life wondering and hoping everyday if he/she will see tomorrow. That is no way to go through life, too afraid to live.
For more information or to request a speaking engagement, please contact the Sickle Cell Association of Kentuckiana. Jo Ann Orr, Marketing/Fundraising Director