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State sued over new rule that restricts access to HIV/AIDS medication for low-income patients

Fernando Hermida holds a bottle of Biktarvy, his HIV medication, in Charlotte, N.C., on May 27, 2024. Hermida received a $1,275 bill earlier this year for the medication, one of the reasons he decided to move to find more affordable treatment. (AP Photo/Laura Bargfeld)
Laura Bargfeld
/
AP
Fernando Hermida holds a bottle of Biktarvy, his HIV medication, in Charlotte, N.C., on May 27, 2024. Hermida received a $1,275 bill earlier this year for the medication, one of the reasons he decided to move to find more affordable treatment. (AP Photo/Laura Bargfeld)

The complaint claims that the state illegally changed rules regarding income eligibility thresholds for the AIDS Drug Assistance Program without having gone through the mandatory rule making process.

The AIDS Healthcare Foundation has sued the State of Florida's Department of Health over its recently enacted rule that will kick thousands of Floridians from the state's AIDS Drug Assistance Program (ADAP).

The complaint, filed Tuesday with Florida's Division of Administrative Hearings in Tallahassee, claims that the state illegally changed rules regarding income eligibility thresholds for ADAP without having gone through the mandatory rule making process.

"The whole point of having to follow procedures and rules is to make sure any decisions made are deliberate, thought through and minimize harm. Floridians living with HIV and the general public's health is at stake here and jeopardized by these arbitrary and unlawful DOH rule changes," said Tom Myers, AHF's chief of public affairs and general counsel.

Earlier this month, the state changed ADAP eligibility requirements for individuals from 400% of the national poverty level (and income of roughly $62,000 per year) to 130% of the federal poverty (roughly $20,000 per year). That change will result in 16,000 Floridians losing coverage under the program. The state's rule changes also eliminates access to Biktarvy, a one-a-day medication for people with HIV/AIDS. The new rules would go into effect on March 1.

AHF estimated that out-of-pocket costs from HIV/AIDS medication are around $4,500 per month.

State officials said the rule change is being taken to prevent a shortfall of more than $120 million in the statewide prescription medication program for low-income people living with HIV/AIDS. They said the changes in income eligibility requirements are driven by the failure of Congress last year to extend the Affordable Care Act tax credits.

READ MORE: South Florida lawmakers urge DeSantis to restore drug funding for low-income HIV/AIDS patients

"It's a really, really serious issue," Florida Surgeon General Joseph Ladapo told legislators in Tallahassee earlier this month.

But AHF says they've seen no data to substantiate that claim.

"We don't know that's a fact… There have been third-hand statements, but no evidence of this. The number that's been floated around is $120 million. We don't know where that comes from. All of these things can be resolved and found out if you follow the normal processes, and that wasn't done here," said Myers. " We don't know why a program that already receives over $80 million a year from the federal government somehow has a $120 million deficit."

The state's rule changes came near the end of open enrollment for the Affordable Care Act marketplace, meaning that very few who lost their coverage were able to access cheaper insurance through the portal. Further, losing ADAP coverage does not constitute a qualifying event that would allow an individual to register outside of the open enrollment period.

AHF is also exploring legislative solutions. The organization has called on the DOH to declare a public health emergency and request an emergency appropriation from the legislature.

Esteban Wood, AHF director of advocacy & legislative affairs & community engagement, says the consequences for people who will lose coverage are dire.

" If someone doesn't take their HIV medication, it will develop into AIDS, which is a death sentence," he said.

He said the state is running out of time to act.

" People who currently are enrolled in the AIDS drug assistance program will be dis-enrolled in 32 days time. Patients are asking us 'What are we supposed to do?' 'How are we supposed to survive?' and we don't have a good answer for them," he said.
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Carlton Gillespie
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