A large hospital in the Bay Area announced last week that it would no longer support essential services for adult patients with Sickle Cell Anemia.
That day I walked through the hospital and conducted a small survey. I asked all the Black employees I encountered while making rounds: What is Sickle Cell Anemia?
None of them really knew much about the disease. Many had never been screened to determine if they carried the gene.
That surprised me because back in the day – I mean the 70s and 80s – most African Americans not only knew about the disease but worked to get resources to identify and screen for the trait and demand better treatment options.
Sickle cell disease is a disease caused by the presence of an abnormal component in the blood stream. Under certain conditions the cell, which is supposed to carry oxygen, will sickle, and clump, causing extreme pain in the areas of the body where the clumping occurs.
Sickle cell anemia is an inherited disease. People who have the disease inherit two genes for sickle hemoglobin – one from each parent.
People who inherit a sickle hemoglobin gene from one parent and a normal gene from the other parent have sickle cell trait. Their bodies make both sickle hemoglobin and normal hemoglobin.
People who have the sickle cell trait usually have few, if any, symptoms and lead normal lives. However, some people may have medical complications, like painful crisis, acute chest pain, and stroke.
More than 2 million Americans have the sickle cell trait. The condition occurs in about 1 in 12 African Americans.
Adults with Sickle Cell Anemia know what it really means to no longer be a child. They face many obstacles including the stigma that comes with having chronic pain and the confusion associated when there is no coordination for all the services patients with Sickle Cell Anemia need.
Many times their primary providers are not aware of most recent treatments. There are fewer hematology specialists available to them.
As patients, they are often characterized as hypochondriac, substance abusers: especially by emergency room personnel because they often lack regular sources of care.
If these patients are admitted to the hospital, they are often discharged prematurely and are readmitted at rates higher than patients with diabetes or heart disease.
It is clear that something needs to change to improve services for adult Sickle Cell patients. The African American community must retake the lead as advocates these patients.
The Affordable Care Act has features that will provide better insurance coverage for some patients with Sickle Cell Anemia, but in states where Medicaid had not been expanded, inadequate services will remain.
Revised guidelines for the care of patients with the disease are currently being developed. It is possible that better medications will soon be available.
But unless there is that “old school pressure” from the Black community, progress toward implementing those guidelines will be slow, and new medications will take time for approval.
In looking at the statistics on morbidity and mortality for adult patients with Sickle Cell Anemia, they cannot wait, and we should not let them.
Michael A. Lenoir, M.D. is CEO and president of the African American Wellness Project (www.aawellnessproject.org).