Sen. Bettencourt’s Bill Heads to Governors Desk to Expand Treatment Access for Rare Disease Patients
AUSTIN, TX — In a overwhelmingly bipartisan victory for patients with rare and life-threatening diseases, the Texas House made final passage on Senate Bill 984 (SB 984), authored by Senator Paul Bettencourt (R-Houston) and sponsored by Rep. Ken King (R-Canadian), with a unanimous 147-0 vote. Marking a powerful step forward in expanding patient-centered care for Texans with acute rare diseases. This bill gives patients facing life-threatening or severely debilitating rare conditions access to individualized investigational treatments customized to their unique genetic profile. SB 984 now heads to Governor Greg Abbott’s desk to be signed into law and will take effect Sept. 1, 2025.
SB 984 builds on Senator Bettencourt and Rep. Kings’ bills passed last decade, when Texas became a national pioneer in passing Right to Try legislation. Those efforts inspired the federal Right to Try Act and were adopted by the American Legislative Exchange Council as a model law for other states.
“SB 984 makes Texas the 1st state in the nation to enact individualized Right to Try protections into law!” said Senator Bettencourt “SB 984 is Right to Try “2.0”, giving Texans the right to fight for their lives with every scientific tool available.”
According to research from the Goldwater Institute, 95% of rare diseases, over 7,000 conditions, have no FDA-approved treatment. Patients with ultra-rare diseases often cannot qualify for clinical trials due to limited patient populations. SB 984 give these patients a chance by opening access to receive personalized gene therapies, individualized vaccines, and other advanced treatments developed under strict federal ethical and safety standards. Individualized therapies can include gene editing, personalized cancer vaccines, and other tailor-made solutions for the patient’s unique genetic profile.
“After multiple sessions of working on this policy, I was thrilled to continue to work with Senator Bettencourt on this issue. We have made huge strides in continuing to give Texans a chance to save lives.” Rep. Ken King stated. “We pass a lot of bills in the legislature. Some good and some bad. Most bills will not be remembered, but this legislation will have an impact on future generations.” King concluded.
SB 984 Key Provisions:
- Expands access to personalized therapies for patients with fatal, rare diseases like Sanfilippo, Batten, Fabry, L-CMD & Barth Syndrome created specifically for their genetic condition.
- Requires informed consent and physician attestation based on the patient’s genetic
- Protects doctors and manufacturers from liability when acting in good
- Upholds oversight approved by Institutional Review Boards (IRBs) and Federal Wide Assurances (FWA).
“Texas is again leading the nation in fighting for the most vulnerable patients, whose only hope lies in cutting-edge, individualized treatments not traditional clinical trials, and for me, the coolest thing you can do as a legislator is pass a bill that saves lives.” Bettencourt concluded.