Sickle cell disease advocates in Texas push for better data tracking

Investigations

AUSTIN (KXAN) — André Harris remembers the close calls after being rushed to the emergency room.

André Harris was born with sickle cell disease and is pushing for more awareness. (Courtesy: André Harris)
André Harris was born with sickle cell disease and is pushing for more awareness. (Courtesy: André Harris)

Right before his 21st birthday, he was admitted yet again after having sickle cell disease complications. 

“I can’t remember for like two weeks what happened. I woke up, and two weeks of my life was gone, because I was in a coma. Because out of nowhere, my lungs collapse, and my lungs begin to fail, and they had to intubate me,” Harris explained.

He was discharged on his birthday. It was a milestone. He was born with the disease and said his parents were told he wouldn’t make it past the age of 21. 

“So it was very sobering that right before my 21st birthday, it seemed that I was going to die,” explained Harris, who is now 32 years old. 

Disease complications

Sickle cell disease is a rare genetic disorder that impacts red blood cells and can cause severe pain, organ damage and even strokes. 

According to the Sickle Cell Association of Texas Marc Thomas Foundation, the sickled cells carry less oxygen to parts of the body, and when the misshaped cells are clumped together it causes pain.

There is no cure.

“I had a lot more complications… a lot more pain episodes, more close calls to death, unfortunately, than I do now. The last 15 years, 16 years, I’ve done very, very well,” explained Harris. “But that also can be attributed to different drugs that have been offered that I’ve been on and treatments and being managed by knowledgeable health care providers.”

Though his treatments have gotten better, he said he still struggles with pain from the disease and the hurdles that come with needing certain medications. Harris explained he often deals with bias and discrimination when needing emergency care. 

“It is sad to be questioned when you’re in pain, and you feel like you’re going to die. I mean, you don’t know if you’re going to make it out of the emergency room that night, because the pain is so bad,” he said. 

State Rep. Jarvis Johnson, D-Houston has heard the concerns. He’s worked on a number of issues impacting the sickle cell community and is now pushing for a statewide registry to better track data. 

House Bill 3673 would require the Department of State Health Services to establish and maintain the sickle cell disease registry. The bill would include details on people diagnosed, complications and treatments. 

“I think if we have a registry that the medical community would know, ‘hey, they’re not drug seeking, they’re sickle cell patients, and they’re actually here in crisis.’ And we should… be able to help without sending them away,'” Johnson said. 

No clear data in Texas 

He explained the registry would also help the state understand how many people are diagnosed. Currently, the only data the state has comes from the newborn screening for the disease. 

Dr. Titilope Fasipe treats children diagnosed with sickle cell disease in Houston. (Courtesy: Texas Children's Hospital)
Dr. Titilope Fasipe treats children diagnosed with sickle cell disease in Houston. (Courtesy: Texas Children’s Hospital)

“We know about 200 babies are born a year in Texas with sickle cell disease but I can’t tell you what happens to those babies when they grow up and when they are adults. I don’t know what happens to them in regards to the disease complications,” explained Dr. Titilope Fasipe, Co-Director of the Sickle Cell Program at Texas Children’s Hospital in Houston. 

Dr. Fasipe said the state has been screening babies since 1983, but there are no records of the number of diagnoses, deaths and complications before the screening became a requirement. 

She treats children diagnosed with sickle cell and is also a patient herself having battled the disease since birth. She testified last month during the Public Health Committee hearing about the importance of the registry. 

“We would hope that it would not just say, ‘hey, this person has sickle cell, but it’ll tell you the type of sickle cell, they’ll tell you the complications they faced? Did they have issues with eye disease? They have stroke? Did they have kidney problems?’ Dr. Fasipe said. “We’ll be able to say, ‘hey, this person started this medicine and things got better for them.’ So we can learn from from different people.”

Push for better outcomes

She said the registry would flag patients so doctors know to send them to specialists for better care and treatments. It would also identify high-need areas, so more resources could be provided. 

“Our goal is to improve health care outcomes and improve quality of life. That’s the whole goal of the registry,” Dr. Fasipe explained. 

According to Texas Children’s Hospital, 70% of Texas cases are among the Black community with 40% of babies diagnosed with sickle cell disease from the Greater Houston area. 

Dr. Fasipe said the disease can affect anybody from any population.

André Harris moved to Texas so he can advocate for those battling the rare genetic disorder. (Courtesy: André Harris)
André Harris moved to Texas so he can advocate for those battling the rare genetic disorder. (Courtesy: André Harris)

“Simply by having this registry, I think we put the humanity back into people who are afflicted,” Johnson said. “We can bring more awareness. And I think once you start doing that, then you start finding the research dollars that are necessary to then start doing more.” 

Johnson explained the registry was a recommendation made by the Sickle Cell Task Force, which was created last session. He’s also worked closely with the Sickle Cell Association of Houston on the legislation.

It would cost the state $1.4 million the first year to create and establish the registry. 

Johnson is hopeful the bill will be headed to the full House soon.

The registry would have made a difference for Harris and his family. He moved to Texas for graduate school last year and has been advocating for sickle cell patients alongside Johnson as a legislative intern. 

“I think this registry would have been very useful, not only to me but to my family, because whenever I presented to an emergency room, they could see that I am an established sickle cell patient, they could see, you know, all of the things that are going wrong or right with me, they could see a complete picture of my healthcare status,” explained Harris. 

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