Four words. That’s all it takes to unravel a parent’s world: “Your child is sick.”

The diagnosis is rare, the prognosis grim. He’s only six, but there’s hope: a new kind of treatment that can be customized to his DNA — a marvel of modern medicine promised for decades that is now a reality.

The potential cure has a gatekeeper, though. While the clock continues to tick, the government won’t allow your child to try this last chance at saving his life.

More than 2 million Floridians suffer from rare diseases, and for thousands of them, outdated federal regulations and the entanglement of bureaucracy continue to block cutting-edge treatments that could mean the difference between life and death. But now, lawmakers in Florida have an opportunity to place life-and-death decisions back in the hands of patients and their doctors, where they belong.

Florida leaders can enact a new law, the Right to Try for Individualized Treatments, that allows Floridians with rare diseases to access innovative, highly personalized treatments without first begging the federal government for permission.

The problem isn’t hypothetical. It’s tragically real.

Take Elijah Stacy, for example. At just 6 years old, doctors gave Elijah a crushing diagnosis. He had Duchenne Muscular Dystrophy, a rare, incurable, and fatal genetic disease that slowly erodes muscle strength and robs young people of their independence. As they reach adolescence, DMD patients start losing strength in their arms. Eventually, their heart and diaphragm weaken, too. Death typically comes by the mid-twenties.

Waiting on the government to go through reviews and testing, granting approvals, and making recommendations isn’t a luxury someone like Elijah can afford.

When Elijah was only 11, the disease had already taken away his ability to walk. Now, at 23, he’s struggling to use his arms. But that hasn’t stopped him and he’s not saying goodbye. Elijah has led the fight for his life — and the lives of thousands of others — by advocating for the Right to Try for Individualized Treatments.

The reform, which is now law in nine states and currently under consideration in the Florida Legislature with HB 1333/SB 680, defies a federal system that prizes red tape over relief, rules over recovery, and leaves dying patients trapped as they wait for the end to come. It recognizes that those facing debilitating, rare diseases need action now and allows patients to access cutting-edge therapies tailored to their genetic profiles, even if the Food and Drug Administration has yet to approve.

“Right now, I can be willing to try a new treatment, the manufacturer of the treatment can be willing to allow me to try it, and a doctor can be willing to administer it — yet Uncle Sam is not willing and stops me from receiving a lifesaving treatment,” Elijah said. “This is completely backwards. After all, doctors know their patients better than a far-off bureaucrat who doesn’t even know the patient exists. Why should I have to beg the federal government for permission to try to save my own life?”

Elijah’s story is far from unique. Tens of millions of Americans, including thousands in Florida, live with rare diseases and want to try anything they can. Although new technology has ushered in an age of personalized care customized to a patient’s unique DNA, regulations have not kept pace, leaving many stranded. Too often, those suffering from degenerative or rare diseases have to wait years for a therapy that could help them today.

By enacting the Right to Try for Individualized Treatments, Florida lawmakers can advocate for some of the state’s most vulnerable, empowering them to fight to save their own lives despite distant regulators standing between them, their doctors, and a treatment.

“The reality for me is that I’m going to die, likely before I reach middle-age,” Elijah explains. “The average lifespan for people with Duchenne is 25. But it doesn’t have to be that way.”

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Brian Norman is the director of State Affairs at the Goldwater Institute, where he assists in developing and implementing Goldwater’s national legislative affairs strategy.

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One day after its Senate companion cleared its final committee stop, a House bill allowing Miami Beach to pay the sizable balance of a wrongful death settlement is also headed for a floor vote.

Members of the House Judiciary Committee voted unanimously for HB 6519, which would authorize Miami Beach to pay $1.7 million to the family of Peniel “P.J. Janvier, a 28-year-old city employee who drowned in a community pool last year.

Miami Republican Rep. Juan Porras, the measure’s sponsor in the House, presented the bill to the panel Wednesday, but kept his comments short. The bill received nothing but “yes” votes in the chamber.

Its upper-chamber analog (SB 14) by Miami Gardens Democratic Sen. Shevrin Jones fared nearly as well; only Pensacola Republican Sen. Don Gaetz voted against the measure.

HB 6519 is known as a claims bill, a special classification of legislation intended to compensate a person or entity for injury or loss due to the negligence or error of a public officer or agency.

Claims bills arise when the damages a claimant seeks are above the thresholds set in Florida’s sovereign immunity law, which today caps payouts at $200,000 per person and $300,000 per incident.

The latter sum is what Janvier’s family has received since May 2024, when the Miami Beach City Commission approved a $2 million settlement.

Janvier, an Army Reserve member and recreation leader with the city’s Parks and Recreation Department, was visiting kids he oversaw during Summer camp on Aug. 16, 2022, at the Scott Rakow Youth Center’s outdoor pool.

Video footage recorded Janvier being pushed by a camper into the pool’s deep end. He struggled for 12 minutes as kids tried to save him and a lifeguard on duty was transfixed with his phone.

Miami Beach later suspended two employees and fired a third over the incident and agreed to pay Janvier’s family, who have only seen $300,000 of the agreed-to sum. Janvier’s LinkedIn page features a work history indicative of a civically engaged young man who enjoyed working with people. He worked as an activities coordinator for the Pompano Health and Rehabilitation Center before becoming a youth recreation specialist with Miami-Dade County, a job he parlayed into his recreation leader post with the city that he’d held for three years before his death.

He was also close to marking three years working as a sanitation inspector for the city of Miami and was nearing six years with the Army Reserve, where he was a heavy equipment operator.

His LinkedIn page says he held a master’s degree in health services administration and a bachelor’s degree in marketing from Florida International University.

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The House Education and Employment Committee passed a measure Wednesday that seeks to establish rules and protections regarding student athlete representation and compensation for the use of their name, image, and likeness (NIL).

Naples Republican Rep. Yvette Benarroch presented the bill (HB 981) and explained that the legislation would limit what athlete agents are able to receive from NIL earnings and would create transparency by establishing a public database of agents.

“This bill protects student athletes by placing a 5% cap on the fees athlete agents can collect from new name, imagine, and likeness or NIL contracts, involving NIL collectives,” Benarroch said. “It also allows high student athletes, not just seniors, to earn NIL compensation if they’re being recruited to play sports.”

Benarroch said that student athletes would be able to seek advice, while audit requirements would be removed.

“Additionally, the bill ensures student athletes can seek advice from coaches, economic advisers, or their school registered advisers, with parental consent required for minors,” Benarroch said. “Finally, it removes an unnecessary Department of Education audit requirement, as schools are only required to maintain a list of registered advisers.”

“The bill is a balanced approach that protects student athletes, ensures transparency, and promotes responsible NIL participation,” Benarroch added.

An amendment was adopted that clarifies that the 5% cap only applies to collectives and does not require a student athlete to register compensation with the Florida High School Athletic Association. It further clarifies that a high school student may earn compensation for name, image, or likeness and must get parental consent if the student athlete is under the age of 18.

Sarasota Republican Rep. Fiona McFarland thanked Benarroch for the bill and for taking suggestions into consideration after the last committee stop.

“This bill has made a great improvement, and I know that you will continue to do so as it completes its journey through the committee process,” McFarland said. “As it moves forward, I still have some concerns about this new category we’re creating of a registered adviser. Perhaps outlining where the adviser needs to register, that feels like a very formal title to me.”

McFarland added that she also has concerns over public high school coaches having an alternative revenue source through NIL deals when they’re being paid by Florida taxpayers.

“Those are two very separate activities in my mind, and I know that your heart for protecting our student athletes will dive into these issues,” she said.

Jacksonville Democratic Rep. Kimberly Daniels supported the bill and said she would like to sign on as a co-sponsor and encouraged her colleagues to do the same.

“Representative Benarroch, thank you for this great bill,” Daniels said. “It’s awesome the work that you’re doing and I’m even going to sign on as a co-sponsor and ask my colleagues to do the same.”

North Miami Beach Democratic Rep. Wallace Aristide also supported the bill and noted that he has personal experience with student athletes as an educator and pointed out that his son is a football coach at Texas A&M.

“I’ve been around football all my life, my son is a football coach at Texas A&M, there’s really a tremendous issue, it’s a major problem, families will understand,” Aristide said. “See, there’s a real-life thing happening here, and sometimes when you don’t really know about it, you’re not in the middle of it, where people are getting cars, we’re they’re going leasing cars, some very young people, that advantage can be taken, they could be taken advantage of.”

Aristide added that he understands concerns over high school coaches and said there are people who would take advantage of young student athletes who find themselves suddenly with a lot of money.

“This is a major concern, and I understand about the coaches who don’t get paid a whole lot, they’re going to be given a whole lot of responsibility, because the parents come and they listen to the coaches, they build relationships with the coaches,” Aristide said. “This is going to be a problem that is going to explode eventually, because you’ve got people who are predators, they’re going to try to take advantage of these families, so I want to thank you for bringing this.”

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