This is government doing exactly what it was elected to do – seeing a problem, and fixing it.
By Dr. Kyle Janek, M.D.
AUSTIN, Texas (Texas Insider Report) — As a practicing anesthesiologist, a former State Legislator, and a former Executive Commissioner of the Texas Health & Human Services Commission, I've long been involved in efforts to try and help Texans suffering from pain due to chronic disease like Sickle Cell Disease (SCD).
For decades, there has been little to offer patients apart from treatments that help manage the symptoms and complications of the inherited blood disorder.
That's why I'm writing to commend Governor Greg Abbott and our state legislature for their work in expanding access to potentially curative treatments for sickle cell disease across Texas.
That's why I'm writing to commend Governor Greg Abbott and our state legislature for their work in expanding access to potentially curative treatments for sickle cell disease across Texas.A little more than 2 years ago, an incredible young woman from Katy, Texas made history as the first patient in the Texas Medical Center – and was one of the first 50 people worldwide – to receive gene therapy for sickle cell disease.
Before her treatment in 2022, the Houston Chronicle described her life as being consumed by pain so severe she described it as "someone squeezing and stabbing you at the same time."
Simple childhood experiences that most of us take for granted like riding a bike were impossible because of constant and unpredictable hospital stays.
But after receiving the special gene therapy treatment, she was able to work and look forward to attending college out of state.
Now that doesn’t sound like a big deal – until you stop to think about how restricted her life was before due to her inherited disease. That story, and her outcome is illustrative of what the other Texans living with sickle cell disease could achieve if they are able to access treatment.
And there are thousands of people who could be helped. In Texas, one in every 2,000 Texas babies is born with sickle cell disease – representing the third-largest population of patients in the country.
Without treatment, these Texans face a lifetime of excruciating pain crises, stroke risks, expensive hospital stays and shorter life expectancy.
Thankfully, our public officials are listening – and acting.
In 2023, Governor Abbott signed House Bill 1488. This comprehensive legislation required our medical schools to include sickle cell education in their curriculum, especially for future emergency medicine and primary care doctors.
It also strengthened our Medicaid programs to ensure they follow national treatment guidelines, and it expands our state's sickle cell task force to include more medical experts and community voices.
Most importantly, it focuses on preventing the all-too-common situation where sickle cell patients in crisis are misunderstood in Emergency Rooms.
In 2023, Governor Abbott signed House Bill 1488. This comprehensive legislation required our medical schools to include sickle cell education in their curriculum, especially for future emergency medicine and primary care doctors.It also strengthened our Medicaid programs to ensure they follow national treatment guidelines, and it expands our state's sickle cell task force to include more medical experts and community voices.
Most importantly, it focuses on preventing the all-too-common situation where sickle cell patients in crisis are misunderstood in Emergency Rooms.
By improving education and awareness across our healthcare system, we're making sure patients get the expert, compassionate care they deserve.
And we have three major medical centers that are ready to offer cutting-edge gene therapy treatments – Medical City Dallas, Methodist San Antonio, and Texas Children's Hospital in Houston are all onboard. But Texans suffering from sickle cell still aren’t receiving treatment because they are waiting on state guidance.
I know our Texas state agencies are working as expeditiously as possible to prevent patients from waiting another day where they could end up in the hospital due to a pain crisis or other complication.
Our medical teams are ready. Families are waiting.
Let's finish what we started and make Texas a national leader in sickle cell treatment.
This is government doing exactly what it was elected to do – seeing a problem and fixing it.
Let's finish what we started and make Texas a national leader in sickle cell treatment.
This is government doing exactly what it was elected to do – seeing a problem and fixing it.
Governor Abbott and our Texas State Legislature have shown that Texas can lead the way in creating access to life-changing medical innovations for people. Once we get these final guidelines in place, we can help more young Texans like that young woman from Katy live their dreams – free from the shadow of Sickle Cell Disease.
An anesthesiologist and physician by training, Dr. Kyle Janek served in the Texas Legislature from 1994 to mid-2008. He is also a former Executive Commissioner of the Texas Health & Human Services Commission.
