Thousands of Floridians regain access to HIV drugs as DeSantis signs law reversing his own agency's cuts

Thousands of Floridians living with HIV/AIDS are regaining access to life-saving medication after Gov. Ron DeSantis signed legislation Tuesday reversing most of the deep cuts his administration ordered earlier this year.

House Bill 697, now law, appropriates $30.9 million in stopgap funding to get the AIDS Drug Assistance Program through June 30 at roughly its previous levels. Without the fix, 12,000 to 16,000 people would have lost coverage.

The AIDS Drug Assistance Program pays for the expensive medications for about 28,000 Floridians. In January, the Department of Health began notifying recipients of significant cuts: reducing the maximum income for an individual covered by ADAP from $63,840 a year (400% of the federal poverty level) to about $21,000 a year (130% of poverty).

The reductions, which went into effect March 1, included eliminating medications from the list of approved drugs and no longer paying premiums for some recipients’ Affordable Care Act insurance coverage.

The governor hadn’t announced the action as of Tuesday afternoon. But his office has notified some lawmakers who worked on the issue, including state Sen. Rosalind Osgood, D-Fort Lauderdale, that he signed it. And the Florida Senate website showed DeSantis signed it into law.

“It wasn’t everything we wanted, but it was an immediate response to meet the needs of people in Florida who desperately need this lifesaving medication,” Osgood said. “I am very grateful to the governor and to the Senate and to the House for taking care of this population of Floridians.”

Esteban Wood, director of advocacy and legislative affairs at AIDS Healthcare Foundation, said those who were cut off “can breathe a little easier” after weeks of uncertainty. “For ten weeks, 12,000 Floridians living with HIV did not know if they could fill their next prescription. Today, they can,” Wood said in a written statement.

The Florida Department of Health, which is run by the DeSantis-appointed state surgeon general, Dr. Joseph Ladapo, said earlier this year it was acting because of a $120 million budget shortfall caused by federal funding cuts.

Other states are experiencing shortfalls in their programs, prompting cuts, the health research organization KFF reported, citing several reasons: federal funding not keeping pace with inflation, an increase in people turning the program, rising drug costs, and expiration of extra subsidies for Affordable Care Act insurance.

A Department of Health spokesperson said before the legislation was signed that the agency “implemented necessary program changes to responsibly manage resources while maintaining access to critical medications for Floridians living with HIV.”

The AIDS Healthcare Foundation, which sued to challenge the Florida changes, disputed agency numbers and conclusions. Its challenges have so far been unsuccessful.

With a widely used HIV medication costing $4,500 a month for people without insurance, the change portended a crisis for those facing removal from the rolls.

“Words can’t describe the urgency,” state Sen. Carlos Guillermo Smith, D-Orlando, told his colleagues just before they voted to approve the stopgap fix. The HIV Medicine Association called it a “public health disaster.”

Republican and Democratic state senators and representatives came together to undo what the Health Department was implementing. “This emergency funding is a critical bipartisan victory for public health and a testament to the power of community action,” state Sen. Shevrin Jones, D-Miami Gardens, said in a statement Tuesday.

Besides improving the health of infected individuals, they said there were other advantages to the program. It saves lives and saves money, state Rep. Mitch Rosenwald, D-Oakland Park, told his colleagues.

Off medication, people will get sick and require much more expensive treatment in hospitals, often in emergency rooms. With medication, a person who maintains what is called an undetectable viral load has zero risk of transmitting HIV to others.

The Florida Senate and Florida House unanimously approved the stopgap measure. It restores the previous income limits.

But it does not restore an expensive, widely used medication, Biktarvy. People who use it will have to switch to different drugs, which require multiple pills daily instead of the once-a-day Biktarvy. A multi-pill regimen can be harder for people to maintain, experts say, which can lead to adverse health consequences.

State Sen. Jason Brodeur, R-Sanford, sponsor of the legislation, said lawmakers balanced competing priorities.

“Do you leave one very expensive drug on there and cover fewer individuals or do you cover drugs that have the same clinical outcomes, you take more pills, but you cover many more people. That’s what we chose to do,” he said on the WLRN-WUSF public radio program Florida Roundup.

The effort to preserve the program included the AIDS Healthcare Foundation, the Equality Florida LGBTQ+ advocacy organization, and Michael Rajner, a Fort Lauderdale ADAP recipient who has been involved in a range of civic and governmental organizations, including five years on the Department of Health’s ADAP advisory work group.

They were aided by state legislators’ frustration about being kept in the dark by the Department of Health.

Several lawmakers said they hadn’t been told about what Ladapo’s agency was doing, and learned about it for the first time when Rajner showed up to testify before a legislative committee in January.

Senate President Ben Albritton, who is known for being judicious in his comments, was among them.

“The abrupt changes in the funding for this critical program are not something any of us expected,” Albritton said in a statement after the legislation was passed and while it was awaiting the governor’s signature.

When the repair bill ultimately passed, lawmakers said during the debate that it was so difficult for them to pry information out of the Health Department that they added language to the measure requiring the agency to provide periodic reports with details about the program.

“If you knew the teeth-pulling process of trying to just get information about simple numbers and people from a state agency to keep a program alive, you would be infuriated,” state Rep. Alex Andrade, R-Pensacola, the chair of the Health Care Budget Subcommittee, told his colleagues.

A Department of Health spokesperson, in a statement after the legislation was passed and before it was signed into law, said the agency “remains committed to engaging in serious, solutions-oriented discussions with stakeholders who are focused on ensuring the long-term viability of ADAP.”

Legislators want more information because the issue isn’t resolved. The fix runs only through the rest of the state fiscal year.

How the program will operate for the year beginning July 1 won’t be decided until lawmakers reach agreement on a state budget later this spring. The House has proposed $68 million in additional funding and the Senate has proposed $118 million.

“We need a long-term solution that guarantees consistent, uninterrupted access to treatment. The Legislature and the (Department of Health) must pursue every available option to keep the program solvent,” Smith said in a written statement Tuesday. “Floridians living with HIV should never have to wonder if their medication will be there tomorrow. Access to treatment is not optional, it’s a matter of life and death.”

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