Lawmakers recently passed legislation that will help Floridians suffering from sickle cell disease get the treatments and medications they need, but often have trouble receiving.
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House Bill 1481 requires certain healthcare providers to notify primary care physicians who care for newborns and infants of sickle cell screening results. It will establish a statewide registry for individuals diagnosed with sickle cell.
Dr. Linda Hill-Perdue works with sickle cell awareness organizations like Hands of Hope to advocate for Floridians with the disease. The sickle cell survivor, who testified in support of HB 1481 during the legislative session, discussed its impact with State of Reform.
“Basically, 90 percent of America doesn’t know a person is born with sickle cell. Testing was not done on babies until the late 1990s. So a child (then) could’ve had this disease, and it could’ve been misdiagnosed. So the doctor never would have taken a blood test or knew that both parents were carriers. So you have a lot of premature deaths. To have a bill pass that mandatorily makes sure every baby born in Florida is tested is huge.”
Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, which carries oxygen through the body. Red blood cells are normally disc-shaped, and flexible enough to move easily through blood vessels. In sickle cell patients, red blood cells are crescent-shaped, do not bend or move easily, and can block blood flow to the rest of the body. The blocked blood flow can lead to serious problems including stroke, eye problems, infections, and pain crises.
“My body works harder to breathe because of my cells,” Hill-Perdue said. “The reason a sickle cell patient is constantly in the hospital is because you’re very vulnerable. You’re like a cancer patient. Your immune system is done. A charley horse is a good example of a pain crisis for a sickle cell patient. Think of your worst charley horse and magnify it by 10.”
Information entered into the statewide registry will help organizations make informed treatment decisions and support the use of therapies. Many providers have limited knowledge of sickle cell disease, and are unaware of new treatments that can lessen hospital stays for them. And many patients with chronic pain syndromes who are in need of medication are not able to acquire them due to stigmas around drug use.
“Now, if I move from Tallahassee to Tampa, a doctor can’t question whether I have sickle cell. And therapy is something that patients can now receive. So the bill is full circle. Not only [is a provider] going to recognize that you have the disease, it now makes it mandatory for doctors to treat you. They can’t turn you away. In addition to that, they’re going to follow you through the registry, so if you need additional resources you can get them.”
While newborn screening is mandated in all 50 states, it is ineffective in capturing individuals living with sickle cell who were born prior to universal screening or outside of the US.
HB 1481 is an example of sickle cell finally getting the attention it deserves, and has needed for a long time, Hill-Perdue said.
“It hasn’t gotten the recognition that it needed, and now it’s getting it with doctors because there are so many interracial marriages,” she said. “The diversity is forcing clinicians to do their research.”
Hill-Perdue credits advocacy groups and HB 1481 sponsors Reps. Fentrice Driskell (D-Tampa) and Daryl Campbell (D-Fort Lauderdale) for drawing the public’s attention to sickle cell. She noted that the bill passed unanimously in the House.
“It is very rare to get a unanimous vote. That says a lot about the representatives. The sickle cell community is grateful to every program that has been fighting for years without any help,” she said. “We’re blessed that somebody has championed for us. You have programs that people have funded on their own. This has been a long fight.”
It is also important for these groups to continue to raise awareness about local blood donor programs, as blood transfusions are a valuable treatment for sickle cell, Hill-Perdue said.
“Sadly, people have to be aware that sickle cell is not going anywhere,” she said. “Our numbers are growing with people being diagnosed. The treatments need to improve, the knowledge of the disease needs to improve, and cutting edge treatments are needed.”