Blood is the jet fuel of the body. It helps you jump, run, breathe and move with ease through the world. So imagine what happens if that fuel isn’t running smoothly through your body. It’s clogging your system, straining every valve, organ and extremity as you’re slowly starved for air. That sounds excruciatingly painful, and that’s exactly what 1 in 365 African Americans deal with who suffer from sickle cell anemia.
September is Sickle Cell Awareness Month and it’s common throughout the month to see ‘awareness raising’ articles about famous people living with sickle cell, like actor Larenz Tate (Power), T-Boz from TLC, former Giants running back Tiki Barber or even Howard University President Wayne Frederick. You seldom see stories about what actions are being taken by scientists and researchers to make sickle cell disease and the dozens of medical consequences that stem from it a thing of the past. That’s why Rep. Sanford Bishop (D-Ga.) and the Congressional Black Caucus have decided to do something about it.
The reason most people’s blood runs smoothly through their bodies is that red blood cells are round and smooth, which allows them to slip through blood vessels with ease. For those with sickle cell, red blood cells have hardened into a “C” shape, (thus the sickle name); they clog the bloodstream and choke off vital oxygen to organs, causing pain, organ failure and, in some cases, death.
When a child is diagnosed with sickle cell—sometimes even toddlers—doctors often warn parents about the child’s potential limitations and prescribe proper therapy and medication to make sure he or she lives a long and healthy life. Unfortunately, like many other areas of the American healthcare system, not enough attention is paid to a disease that primarily affects African Americans, and many of the other consequences of sickle cell get missed.
“Sickle cell retinopathy is overlooked by most pediatricians but even some specialized doctors,” says Morton Goldberg, the director emeritus of the Wilmer Eye Institute at Johns Hopkins University in Baltimore. Dr. Goldberg has the tone of a man who has been in the trenches for years and is finally seeing a turning point in the war. He has been working on sickle cell retinopathy for over 50 years and talks about how the disease, because it is most common in African Americans, is often overlooked even though the consequences are utterly dire and easily preventable.
For the layman, sickle cell retinopathy is when the diseased blood cells cause clogging in the blood vessels around the eye, which can lead to a host of other complications, the most serious being blindness. There is equipment out there, even training that can help doctors diagnose sickle cell retinopathy early to give parents and patients the tools they need, but that need usually goes unmet. Why?
“There’s been insufficient funding for the last 30 to 40 years,” says Dr. Goldberg, which is why he’s on board to promote H.R. 2620, the Faster Treatments and Cures for Eye Diseases Act proposed by Bishop.“For far too long, we have had federally funded research sitting on the shelf, waiting for private investors to put it into practice,” Congressman Bishop said. “When it comes to turning research into cures, we must seek new ways to tackle old problems. The “Eye bonds” created by the Faster Treatments and Cures for Eye Diseases Act will give health research the boost it needs to help Americans. These bonds will fund research that has the potential to deliver new treatments for a range of conditions, including macular degeneration, glaucoma, blindness caused by diabetes and sickle cell disease, and many others. And this is just the first step, if this pilot program is successful, a similar approach could be used to support groundbreaking research for other conditions such as cancer, Alzheimer’s and Parkinson’s disease.”
Money is, of course, one of the main reasons why research into preventing blindness caused by other diseases often doesn’t go anywhere or doesn’t go far enough, especially when those suffering are from underserved communities to begin with. On top of blindness caused by sickle cell, retinopathy from diabetes causes 17 percent of vision loss in African Americans and blindness caused by glaucoma is twice as likely (3.4 percent) in African Americans as it is in white Americans (1.7 percent).
“A lot of this is about access to care,” says Dr. Carlton Haywood, a professor of biomedical ethics at Johns Hopkins. The bill proposed by Rep. Bishop has particular resonance with Haywood since he actually has sickle cell and has spent much of his career focusing on the impact of care and access for blood-borne diseases. Haywood, who was also a former patient of Dr. Goldberg, points out that even when a doctor may advise a family to look into the possibility of retinopathy, without funding for even the diagnosis, preventive or corrective surgeries could be astronomical.
All too often, the press and regular voters talk about all the things that Congress doesn’t do. In the process, we forget about the kind of day-to-day grind work that members of Congress do every day to help people not just in their districts but across the nation.. The Faster Treatment and Cures for Eye Diseases Act is the kind of thing that everyone says they want Congress to pass (who isn’t against blindness?), but it currently sits in the Energy and Commerce Committee, waiting for a vote in committee so that it can be voted on by the entire House. This is the kind of bill America wants to see, and this bill, both figuratively and literally, can make that happen.