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AUSTIN (KXAN) — “This disease is unpredictable. One day, I could be fine… then the next day, I could wake up feeling like I’m literally dying,” André Harris, who has sickle cell disease, said.

Sickle cell is an inherited blood disorder that blocks blood flow, and can cause intense, piercing pain throughout a person’s body.

Harris recently testified before lawmakers about his disease, and why there needs to be more awareness in the state during Texas’ 88th Legislative session.

A few weeks after his testimony, his efforts would prove to be unsuccessful.

‘Historically a disease that has been affecting Black people’
It’s a disease that predominantly affects black people, according to the CDC. There’s no cure. Advocates like Harris have been pushing for more research — which requires funding — for decades.

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Getting funding can be complicated, Harris said. This is due to the fact that often times funding and research is tied to data. There is a newborn screening for the disease, but other than that, there’s no data that tracks individuals who are living with sickle cell in Texas.

That’s why Harris and others were hoping House Bill 181, which passed the House and the Senate during Texas’ 88th Legislative Session, would’ve been signed into law by Governor Greg Abbott. That bill would have created a state registry for sickle cell; however, Abbott vetoed it.

Abbott raised concerns about confidentiality issues, due personal information going into a database.

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Texas’ registries
Houston-area Democratic State Representative Jarvis Johnson drafted HB 181. He disagrees with Abbott’s confidentiality concerns.

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Texas currently has several statewide registries for things like: cancer, birth defects, immunizations and burn pits.

“[Did the governor] ask anybody with sickle cell whether they care if their confidentiality was important?” Johnson asked. “Because people who are afflicted with sickle cell want everyone to know what is going on. They want people to be engaged, they want people to know, because they understand when people know it is better for them.”

‘This type of experience is emblematic of our community’
When Harris was a fresh 21 years old, he said he almost died because the hospital misdiagnosed his condition that stemmed from his sickle cell.

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“[I had what’s] unique to sickle cell, called acute chest syndrome,” Harris said. “And it’s similar to like pneumonia… but if they don’t treat you for the acute chest syndrome, the longer you go, the more you start to decline. I ended up getting diagnosed with pneumonia.”

Two weeks later, Harris said he woke up from a coma, with his family not knowing if he was going to survive.

“This type of experience is emblematic of our community,” Harris said. “So many people go through things like this, because providers, especially in the emergency room settings aren’t familiar with how to take care of us,” Harris said.

It’s one of the reasons he’s so involved in spreading awareness about sickle cell. And he said even though there won’t be a state registry for the disease created in the near future, he still plans to advocate for change.

“We also need to figure out a way to keep emergency rooms and hospitals accountable for how they treat sickle cell patients is sickle cell patients when we are having pain crises, and we go to an emergency room, and they don’t give us the appropriate treatment,” Harris said.

Working with pharmaceutical companies and medical schools
Johnson said he worked with the state health department to apply for a grant that would fund a sickle cell registry. However, now that HB 181 was vetoed, he said Texas unlikely to get that money. That’s largely in part, because there is no real data to track how the disease is affecting our state.

“We’re working with the pharmaceutical companies, we’re working with medical schools to do our very best to bring more awareness,” Johnson said. “But to simply find out what the numbers are, it’s going to be difficult.”

There are currently no federal mandates, tied to sickle cell registries and data.

Johnson said he does plan to refile the bill to create a Texas sickle cell registry next session.