Thousands at Risk
Welcome to another day in my life. Today is Tuesday and I hope you are having a safe and great week so far. Today is a very busy day for Dab the AIDS Bear and me. I have several things to get done today including a doctor appointment.
Speaking of health care, we are still having problems in the United States making sure everyone with HIV has access to life saving anti-HIV medications.
Karl Warren is one of 31 Leon County residents — and more than 4,000 statewide — on ADAP's waiting list to receive life-saving medication for HIV/AIDS. Warren was diagnosed in 1995. On his own, he said he could never pay the $7,000 a month for his meds. "ADAP for me is literally the difference between life and death," he said. / Melina Vastola/Special to the Democrat.
Management failures by a state agency have put thousands of Floridians at risk and required those sick with HIV and AIDS to depend on charity from pharmaceutical companies to get life-saving medication.
Federal auditors earlier this year said Florida's AIDS Drug Assistance Program (ADAP) failed to see a coming spike in destitute patients unable to pay the thousands of dollars a month required to treat their disease. That rapid increase in clients for ADAP services happened and state coffers went dry.
Dr. Ed Holifield, a Tallahassee physician and community activist on behalf of health care for the poor, said it's a travesty.
"We are living in 2011. We call ourselves a civil rights society," Holifield said. "This is not the way to treat people, no matter what their station is in life."
For thousands of Floridians, the mismanagement could be the difference between life and death.
Only an emergency infusion of more federal money and, in the Tallahassee area, the contributions of nonprofits and pharmaceutical companies, are providing those with HIV or AIDS access to the expensive medication they'd otherwise be unable to afford.
Now, more than 4,000 low-income Floridians living with HIV or AIDS are on a growing waiting list for essential medication, the biggest such list in the country.
In Leon County, 31 residents are on the outside looking in, depending on charity health care for life-saving medication.
Karl Warren, a Tallahassee man on ADAP's waiting list since August, gets eight medications from Big Bend Cares, a Tallahassee-based agency, on a month-to-month basis. On his own, he said he could never pay $7,000 a month for his meds.
"I could not even be homeless and do this," said Warren, 45. "I could give up everything, including food, and I still would not be able to afford this. There is just no way."
Warren was diagnosed in 1995.
"ADAP for me is literally the difference between life and death," he said.
State officials say a wounded economy and a rise in unemployment overloaded the state's ADAP program. But the U.S. Health Resources Services Administration says the Florida Health Department's inability to manage federal money created the state's deficit that reached $32 million in April 2010. A Health Resources Services report said the state department "failed to utilize trend data, project program growth and expenditures and take quick action."
The state currently is working with local health departments to reduce the waiting list by 1,500 residents statewide with additional federal money.
Sixteen Leon County residents are slated to get off the waiting list.
State Sen. Joe Negron, a Stuart Republican who chairs the Senate's Health and Human Services budget subcommittee, said he is pleased by the immediate efforts to enroll more residents in the program.
But Negron said "it is embarrassing" to know drug companies had to bail the state out of what could have been a "catastrophic" situation if residents had to go without life saving drugs.
"The program was running out of money before it ran out of bills it needed to pay," Negron said Thursday, noting he was happy the health department was making changes.
A temporary agreement with drug companies earlier this year provided $23.8 million in medications for 5,403 Florida residents in February and March.
"Thank God that some of the pharmaceutical companies voluntarily paid for these medications for these individuals," Negron said. "We appreciate the generosity of the pharmaceutical companies, but the state should pay its bills."
Florida had the longest waiting list in the nation with 4,098 people, representing nearly half of those on waiting lists nationally.
Tom Liberti, chief of the state's Bureau of HIV/AIDS and Hepatitis, said Florida has the third highest number of people living with HIV or AIDS in the country, following New York and California. Last year, Florida had 121,161 cumulative AIDS cases.
He gave a brief update to Negron's committee at the Capitol and said the state will have money to treat those getting help now for the rest of the grant year, which ends in March, to provide services to ADAP clients. Roughly 2,500 HIV-positive Floridians will still be on the outside waiting for help.
Liberti told the committee that Florida, operating the program since 1989, got caught in the ADAP storm like other states, such as Georgia, Louisiana and Virginia. He said the federal budget remained flat, and demand for help surged along with the unemployment rate that left more people without health insurance to pay for the expensive HIV drugs.
Signs were evident
After a four day site visit in January, federal Health Resources Services Administration officials determined Florida could have been more proactive in accessing how money from a federal grant program is used.
The report said the state's health department knew a major deficit was on the horizon as early as the first quarter of 2009-10, based on an analysis of quarterly spending patterns, new enrollments, reclassifications and total quarterly enrollment trends.
Deborah Parham Hobson, associate administrator for HIV at HRSA, said the agency is going to remain in constant communication with Florida and provide technical assistance as needed.
Part of the issue is low state funding.
Parham Hobson said Florida contributes 9 percent toward ADAP programs compared to the national average of 19 percent by other states.
According to the Florida Health Department, the state will get an additional $1 million in federal money from the Ryan White Care Act for the 2011-12 fiscal year, for a total of $86.2 million. The state's Bureau of HIV/AIDS also has applied for and received $6.6 million in ADAP supplemental dollars and $6.9 million in ADAP Emergency Relief Funding.
Among the report's recommendations, HRSA said the state needs to have a cost containment crisis management plan and take advantage of rebates offered by pharmaceutical companies.
Parham Hobson said the rebates are an "untapped source."
"If they reorganized a little, they could take advantage of the rebates," she said.
Since the state received the report, Florida Surgeon General Dr. Frank Farmer said, in a written statement, "We are actively working on developing a long term solution to streamline the program, eliminate a wait list and make more money available to serve patients."
'Relying on charity'
The funding and management crisis infuriates residents like Holifield, who served on Leon County's now disbanded Healthcare Advisory Board.
He said the state created a death list not a waiting list.
"You have a situation where people's lives depend on these medications and they are essentially relying on charity," Holifield said.
And that is putting a strain on the charities.
Rob Renzi, executive director of Big Bend Cares, said all of the Tallahassee-area ADAP clients who are on the waiting list are getting medications through Big Bend Cares, although the efforts have not been easy.
Big Bend Cares has had to use money that would have been used for other services — such as providing food bags and transportation vouchers — for medicines. For example, the agency has gone from spending $9 for a food bag that will feed one client to spending $4 per bag.
"They are getting their medicine," Renzi said. "It is through basically the impoverished programs of the actual drug companies. The question being asked if this continues and goes on, how long are they going to be willing to do that?"
Jeffery Pope, a Tallahassee man living with AIDS, is a volunteer with the Minority Alliance Advancing Community Awareness and Action Inc., also known as MAACA.
He is not on the ADAP waiting list now, but he has been on it twice before. He said the program saved his life since he could not pay for his four medications costing approximately $40,000 per year.
But as a volunteer for MAACA and a member of the Bureau on HIV/AIDS's consumer advisory group, Pope said he frequently hears how HIV positive people are growing more and more anxious about the state's ADAP waiting list.
"Just the stress of the uncertainty can be lethal," said Pope, who was diagnosed in 1996. "Everyone is very concerned."
Warren said he wakes up every day knowing his life is dependent on pills he can not pay for and the state's safety net program can not afford, either.
Although he tries to keep a positive attitude, he has been near death several times. His 138 pound body had dropped 20 pounds in two days recently.
He braced himself, leaning on a cane, as he stood up. His faded black T-shirt could not mask his protruding rib cage and frail body.
"There are times I would literally look in the mirror and say, 'Who the hell are you?'," Warren said. "I know what is inside of you. I just don not recognize the face anymore."
Just more examples of why Ryan White and ADAP funding are so important to surviving with HIV/AIDS.
Until we meet again; here's wishing you health, hope, happiness and just enough.
big bear hug,