Freshman lawmaker continues push for sickle cell registry in Texas
AUSTIN (KXAN) — A freshman Texas lawmaker is making a name for herself this legislative session, authoring a bill that has bipartisan support, and is now closer to becoming law.
The legislation would create a state registry for sickle cell. It's a rare, serious hereditary blood disorder most commonly seen in Black people. And it causes extreme internal pain and infections.
A similar bill passed the House and Senate in Texas' 88th Legislative Session in 2023, but was vetoed by Gov. Greg Abbott.
Freshman representative leading continued push for state sickle cell registry
Houston State Representative Lauren Ashley Simmons is a freshman representative, but is leading the push to implement a sickle cell registry in Texas.
She is one of six authors for House Bill 107. The bill has more than 50 co-authors who are both Democrats and Republicans.
Simmons' drive to advocate for the registry is her daughter, Sydney.
"Sydney is tough as nails," Simmons said. "She is one of the most mature, assertive little people you will ever meet."
Sydney has sickle cell and has been through a lot.
"My daughter has had more hospitalizations than some adults," Simmons said.
Because sickle cell is so rare, it's hard to treat.
"We really don't know just how many people are impacted by this disease," Simmons said. "It just doesn't get the attention it needs."
House Bill 107 passes Public Health Committee
House Bill 107 passed the Public Health Committee in a unanimous vote on Monday.
Next, House members will vote on it. If it passes the House, it'll move on to the Senate, and then to Abbott's desk again.
"This is a way for us to ensure that this disease is being treated with the same care, with the same attention that any other life-threatening illness that impacts people," Simmons said.
Purpose of registries
According to the National Library of Medicine, registries are effective for gathering research to help with rare disorders and diseases like sickle cell.
"In rare diseases where patients are few, research agendas do not exist, standard case guidelines are absent, and patient communities have not yet formed, patient registries are an intuitive first step for stakeholders trying to understand the number of people affected their geographical distribution, and the basic demographic and clinical characteristics of the disease. The scope of these registries may evolve over time, maturing from an outreach/community-building effort or a means for a basic understanding of patient and disease characteristics, to a supportive mechanism for research funding and attracting health care providers. As with all registries, a single rare disease registry need not fulfill all goals for all potential stakeholders. Ideally, however, a well-designed registry provides an infrastructure that can support different needs in an efficient way and eliminate barriers to scientific progress."
National Library of Medicine
Simmons' daughter, Sydney, was at the capitol as she presented HB 107, watching her advocate for her and so many others.
"Her illness is a priority and important, not just for me as her mother, but this place, this building," Simmons said.