A hard-fought win for HIV advocacy in the South comes after sudden cuts to costly meds

Earlier this year, Florida's Department of Health briefly cut benefits for around 12,000 people who need help paying for their HIV medications.

The state said rising health care insurance costs and lack of federal dollars for Ryan White grants to pay for medications meant "adjustments had to be made to ensure resources to the greatest number of individuals within the Department's funding constraints,” a Department of Health spokeswoman said.

In May, Florida lawmakers agreed to restore that funding for another year as part of the state budget. It now awaits the governor's signature.

Esteban Wood, director of advocacy and legislative affairs at the AIDS Healthcare Foundation, talked with WUSF’s Kerry Sheridan about what happened and what lies ahead.

The interview was edited for clarity and brevity.

What is your reaction to this making it into the budget that was just passed by lawmakers?

First off, we're relieved. What this means for upwards of 12,000 Floridians is a life-saving restoration of funds and of access to life-saving medications. This really is a precedent-setting moment for HIV advocacy in the South. This means not only restoration of the federal poverty level up to 400% but also full restoration of the available HIV medications on the drug formulary.

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For months now, people living with HIV in Florida who were AIDS Drug Assistance Program (ADAP) recipients were living in fear, in anxiety, in a state of shock, and today, I think after months of waiting, I think they're finally starting to feel some relief.

What this means now is that for the next fiscal year, starting July 1 through the end of June 2027, the program will be funded enough to restore the federal poverty level to 400% and enough to offer a one pill a day regimen for those folks who are living with HIV and need access to these critical medications.

Did people lose their access to this medication, or have to pay more for it in the meantime?

Yes, in that critical period between March 1, which is when the Department of Health implemented their plan to cut eligibility down to 130% of the federal poverty level — down to about $20,000 a year in annual income — all the way through April 1, which is when the stopgap measure was implemented, in that period, people were without options.

People living with HIV either had to find a temporary solution from a drug manufacturer patient assistance program, or those who couldn't navigate that complex system were left without options.

Some were rationing their medications, some had no idea where to get help. Some of those individuals did lose access to medications, and it was quite scary.

Can you imagine, looking to your left, looking to your right, and not knowing where to go to access a medication that literally keeps you breathing?

AP

Was this one particular drug, or a series of different drugs that were affected?

Two drugs were impacted by the drug formulary restriction. One was Biktarvy. That was completely removed from the formulary, and it's important because Biktarvy is the most popular HIV drug on the market. It's so popular because it's a one-pill-a-day regimen. It's convenient, and for public health advocates, it's really important, because that helps with adherence, it helps people stay on their medications, because it's so easy. There are no other one-pill-a-day regimens.

The second drug that was impacted was Descovy. That HIV medication was restricted. If you wanted to be on Descovy, in theory, you could have stayed on it if you got a doctor's note that clearly indicated that you had kidney issues. But if you didn't have kidney issues, then that drug also was just not available to you.

And what kinds of costs were people facing? Can you give an idea of how much this would cost without that aid?

The reason why ADAP is so important for public health, for clinical outcomes, for just patients staying alive, is that the cost of Biktarvy without insurance is about $4,500 a month. A month! It's just completely inaccessible to individuals without some help, and that's another reason why, at the same time as we advocate to sustain funding for ADAPs nationwide, we also concurrently are trying to raise the flag about how egregiously expensive HIV medication is, and the prices that drug manufacturers are asking for this life-saving medication. It's atrocious.

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But for those individuals that were kicked off of the ADAP program on March 1, what they ended up doing was, they either had to find very, very, very cheap private health insurance plans to acquire their medication, or get their medication through a drug manufacturer patient assistance program, which is temporary, which is not a long-term solution whatsoever.

Those cheap health insurance plans, private health insurance plans, they have many flaws too. It wasn't like it was a quick easy shift. The out-of-pocket costs are enormous. The deductible that a patient would have to reach, before even getting any relief for their co-pays, was just astronomically high, and so it wasn't a long-term solution at all.

I know you don't speak for the Department of Health, but why do you think would they do something like this?

That's a question we're all asking ourselves, right? In January, when they announced this change, they did so without notifying any HIV providers in the state, without notifying the public health infrastructure at large.

They did not have any public hearings on the matter. They did not alert even public health hospitals about this upcoming change; it was a complete shock to upwards of 16,000 people, which were the estimates at the time that this change was coming.

And they didn't even offer many resources for impacted patients to use in order to find suitable alternatives. The reason that they used that they communicated on their website was this was due to a projected shortfall of $120 million.

There are many concerns and questions that arose from that justification. Show us the evidence. What do you mean by $120 million shortfall? Show us the budget table. Show us some justification as to why the program’s budget wasn't balanced properly. They didn't offer any explanation. The HIV advocate community is left scratching their heads as to why they did this.

At the end of the day, they were very close, dangerously close to walking away from people living with HIV. We're disappointed that we had to do so much, that AHF had to rally a dozen times over, around the state, that we had to ask the legislature to step in like this, but in the end, I think the legislature stepped in and did the right thing and restored access to these medications for people in need.

Is there any chance that the governor could veto this, or is this now a done deal?

So, we expect the governor to sign the budget that was agreed on by the legislature. We urge him to sign it. We'd be really pleased if he signs it.