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With the clock ticking, Florida leaders should act now to save lives

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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More than 2 million Floridians suffer from rare diseases, and for thousands of them, outdated federal regulations and the entanglement of bureaucracy continue to block cutting-edge treatments that could mean the difference between life and death.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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With insurance premiums plummeting for consumers, attorneys don’t need relief

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I am an attorney who represents and defends property insurance carriers, but first, I am a consumer and Floridian.

Reversing historic changes that are lowering insurance premiums for hard-working families will be a disaster for policyholders and our state.

For years, insurance premiums only went one direction — up and up again and again due to meritless litigation.

The domino effect threatened our state’s economy and the ability of people to live here.

Lawmakers made bold and historic reforms in recent years, capped by House Bill 837 in 2023 which eliminated “one-way fees” that allowed attorneys to file hundreds of thousands of unnecessary lawsuits with the knowledge that they would lose nothing and stand to gain guaranteed legal fees.  It is what I refer to as “spaghetti litigation.”

Let’s throw it against the wall and see what sticks, without regard to the claim’s merits, just to recover attorney fees.

The reason for the change was one of the most fundamental rules of economics: Competition among providers of any service or product means lower costs for consumers. And insurers were reluctant to cover Florida with the very real threat of bottomless litigation.

Frankly, it has been stunning to see how quickly and effectively these reforms have worked.

In just a little more than a year, nearly 100 homeowners and auto insurance companies in Florida have filed for a rate decrease or no change or increase. Since the reforms took effect, 12 new property insurance companies have entered the Florida market.

Last year, Florida had the lowest average homeowners’ premium increases — less than 1% — in the nation. What a stunning reversal. Even auto insurance costs are dropping, with the largest providers asking to reduce rates by as much as 10%.

Why? There are many reasons, but the biggest contributing factor to this change is that litigation has dropped by nearly 30 percent from past peak levels.

I have seen this firsthand. Before these reforms were enacted, 80% of my firm’s practice focused on litigation. Since then, my practice has shifted to only 20% litigation and 80% pre-suit investigation and resolution.

As an attorney representing insurance companies, my firm and I could earn quite a bit more money if lawmakers pass a bill currently on the fast track to passage in the Florida House.

My plea to those lawmakers — please, don’t do it!

Despite my practice and this shift in business, I am thrilled to see this change. Less litigation is almost always better for consumers.  The claims that need to be resolved are being resolved before they directly hit my desk with the carriers or through the pre-suit process. This is best for consumers, as it means quick settlements and money in hand for repairs.  Rather than years of needless litigation, this is what the consumer needs.

And things are only going to get better. Consider that this rapid stabilization has come during a time of peak inflation and that lingering claims and lawsuits from years ago under the prior statutory regime are skewing the real impact of these changes.

House Bill 1551 will unravel all the progress by bringing back the incentive for lawyers to file as many lawsuits as they can.

Mandating attorney fees in Florida law will not only increase premiums, but it will discourage market competition and scare reinsurers from providing necessary reinsurance. Florida insurers will have no choice but to increase their premium requests again.

Make no mistake: If this bill passes, it will destroy the Florida insurance market and devastate its citizens. Carriers will again begin to leave our state or face insolvency. Homeowners will again see spikes in their insurance premiums, which so many cannot afford.

This bill helps only attorneys. I have faith that lawmakers will recognize the incredible benefits these reforms are bringing consumers and that allowing these successful reforms to keep working is best for all Floridians.

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Katelyn Ferry is a partner at and founding member of Cambo Ferry, PLLC, with offices in Maitland, Tampa, and Miami. Ferry has practiced exclusively insurance defense litigation since 2014 and has focused her practice on the areas of first and third-party insurance coverage and defense.


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Bill expanding Medicaid access for medically fragile children ready for House floor

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The House Health and Human Services Committee unanimously passed a measure Tuesday to ease the financial burden on families who have children with ongoing medical needs.

Port Orange Republican Rep. Chase Tramont presented the bill (HB 1529) and explained that it aims to correct an oversight in previously passed legislation.

“A couple years ago,” Tramont said, “we established a program — Home Health Aides for Medically Fragile Children (HHAMFC) — and there was an oversight in there that parents who were now employed by the Home Health Aides, will likely make too much money to qualify for Medicaid, and that’s exactly who this population is supposed to benefit from.”

The HHAMFC program allows family members to be reimbursed by Medicaid if they are providing care to a relative who is 21 years old or younger with an underlying physical, mental, or cognitive impairment.

Tramont added that the intent of the previous legislation was “not to kiss them on one cheek and slap them on the other,” and further said that the bill would require the Agency for Health Care Administration (AHCA) to authorize waivers.

“So, we’re going to rectify that with this bill,” Tramont said. “We’re asking AHCA to get authorization from the feds to grant a waiver for these families.”

The bill’s analysis states that the measure would increase the maximum hours a home health aide may receive from 8 to 12 hours per day. If they work more than 40 hours per week, a home health aide would also be required to justify their respective agency as to why no other qualified providers are available.

Two Amendments were adopted. The first aligns the legislation with federal requirements regarding the training requirements of Centers for Medicare and Medicaid (CMS) certified home health agencies.

“When I first filed the bill, it included significant reductions to the required hours of training that we established in ’23,” Tramont said. “Unfortunately, the reductions do not comply with the federal regulations, which require home health aides employed by CMS certified home health agencies to complete a minimum of 75 hours of training. So, this (now) requires the Home Health Aid for Medically Fragile Children training to comply with the federal regulations.”

The second adopted amendment explains that the proposed waiver would disregard any income earned while under the program.

“This simply clarifies that that the waiver should disregard income earned under the program and eligibility determination for any Medicaid benefit, instead of limiting it to eligibility determination for public assistance,” Tramont said.

The legislation is supported by the Florida Developmental Disabilities Council, Angels of Care, the Home Care Association of America, and the Home Care Association of Florida.


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New Tampa International Airport CEO to speak at Tiger Bay

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Newly appointed Tampa International Airport CEO Michael Stephens will speak at the Tampa Tiger Bay Club luncheon Friday, alongside the Hillsborough County Aviation Authority and Hillsborough County Commissioner Harry Cohen.

The conversation will serve as an opportunity for engaged citizens to hear Stephens’ vision for the airport as he charts a path forward following the departure of longtime CEO Joe Lopano, who retires this month at the end of his contract.

Doors to the luncheon, held at the Cuban Club in Ybor City, will open at 11:15, with lunch served at 11:40 and the program beginning at noon. Tickets are available online.

Stephens previously served as the airport’s Executive Vice President and General Counsel. He is the airport’s fourth CEO and its first Black leader.

The Aviation Authority Board of Directors voted 4-1 in November to elevate Stephens to CEO, passing over three other internal candidates who had also been considered for the job including Executive Vice President John Tiliacos, Executive Vice President of Marketing and Communications Chris Minner, and Executive Vice President of Finance, Procurement and Capital Programs Damian Brooke. Tiliacos was the other finalist for the position.

Stephens is overseeing more than 670 employees at the Airport, as well as the Peter O. Knight, Tampa Executive and Plant City airports. He will guide Tampa International Airport’s future growth, new technology and other advancements in the industry, as well as financial and environmental sustainability practices.

In his previous role, Stephens provided legal advice to Lopano and board members. He is also the executive vice president for Information Technology Services, Human Resources, Government and Community Relations, Risk Management and Business Diversity. He has nearly 25 years of experience managing legal, compliance, human resources, labor and employment issues. He’s also a veteran, having served as a Captain and Trial Counsel in the U.S. Army Judge Advocate General’s (JAG) Corps.

The talk at Tiger Bay comes as the airport furthers plans for its $1.5 billion Airside D project, which upon completion will be a state-of-the-art 16-gate terminal for international and domestic routes. The design is expected to be complete by the end of this year, with opening slated for sometime in 2028.

Tampa International Airport generates $11.3 billion in economic activity annually, and supports more than 82,000 jobs across the area, including about 10,500 workers employed directly by the airport, its tenants and partners, according to the airport.

The Aviation Authority is an independent special district within the state of Florida established in 1945 by the Legislature to supervise and manage all publicly owned airports in the county.

Cohen, a Democrat elected to the County Commission in 2020, is one of five members of the Aviation Authority Board of Directors.


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