Budget Crunch Hampers HIV Drugs Distribution

It has been nearly thirty years since AIDS was first recognized by the U.S. Centers for Disease Control and Prevention. Ever since, powerful drugs have extended the lives of millions of HIV/AIDS patients. Yet, the budget crunch in many states has led to record number of people being on waiting lists for HIV medication. Florida has more patients on the waiting list than any other state in the country. To prevent further increase, the state is considering cutting by half the income a person can make in order to be eligible for the state's AIDS drug program. Thomas Liberti, chief of Florida's Bureau of HIV/AIDS and Jason King, a patient advocate at the AIDS Healthcare Foundation talk about Florida's HIV drugs shortage.

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MICHEL MARTIN, host: I'm Michel Martin, and this is TELL ME MORE, from NPR News. Later in the program, we find out the latest from Yemen, who's president has been counted as a U.S. ally, even as anti-Western terrorist groups are believed to have based operations there. Now, as the anti-government protests that have swept the Arab world reached that country, there's talk of Civil War. We'll get perspective from Sanaa, the capital of Yemen, and from Washington. But first, back to a pressing, but less visible crisis here at home.

This Sunday is the day recognized as the day, 30 years ago, that HIV AIDS was first recognized as a distinct disease. Back then, patients who were diagnosed with HIV, the virus that causes AIDS, were essentially living out a death sentence. They were told there was nothing that could be done for them. But the development of powerful drugs have allowed millions of HIV-positive people to lead long and productive lives. Now, we've talked often on this program about the quest to get these life-enhancing medicines into the hands of people around the world.

However, the drugs also remain out of reach for many Americans. Last week, The Washington Post reported a record number of people are on state waiting lists to help them get and pay for the drugs that treat HIV AIDS, more than 8,300 people across the country. Thomas Decker is on one of those waiting lists in Virginia. He's lived with HIV since 1992. Since January of this year, he's been lucky enough to get his medication through a voluntary program run by a pharmaceutical company. But if the company decides to stop that program and the state doesn't select him for the government waiting list or for government help, what will he do?

THOMAS DECKER: Well, I guess the only other option is board a bus and go to Canada or Mexico. Most drugs are - even for older people, are prohibitively expensive, let alone any of your HIV AIDS medications. You're talking $4,000 or more a month, which it's, you know, it's not feasible.

MARTIN: We caught up with Thomas Decker of Virginia with the help of The Washington Post. But we want to turn now to the state with the highest number of people on the HIV AIDS drug waiting list: Florida. The state also has one of the highest rates of new infection in the country. We wanted to find out how HIV-positive patients are fairing in that state, so we've called Thomas Liberti. He's chief of Florida's bureau of HIV AIDS. That's within the state's Department of Health. He's managed public health programs in Florida for more than 35 years. He joins us now from WFSU in Tallahassee. Welcome. Thanks for joining us.

THOMAS LIBERTI: Thank you for having me.

MARTIN: We're also joined by Jason King, a patient advocate and pharmacy specialist with AIDS healthcare foundation in Florida. His organization treats patients who have HIV and AIDS, and also advocates for funding and services. He is at member station WLRN in Miami. And welcome to you, Jason. Thank you so much for joining us.

JASON KING: Great to be here.

MARTIN: So, Thomas Liberti, let me start with you. Do you know why the waiting list is so long in Florida?

LIBERTI: Well, there have been a number of factors going on in our state, along with other parts of the country for the last four years. As been reported in the past, we really have the perfect storm going on in the United States and in Florida. We have a long and deep, ongoing recession. We have flat funding from the Federal Government on the money that we get for purchasing the drugs for the AIDS drug-assistance program. We have flat funding or reduced funding in some states from the general revenue standpoint.

Our - we have a massive amount of unemployment. Our unemployment in the state of Florida was approximately 4.5 percent before the recession, and we peaked at 12.3 percent, which included 1.1 million Floridians. We also have four million Floridians without health insurance in our state. The National Institute of Health guidelines changed about a year and a half ago, encouraging more early treatment for HIV.

And along since 19 - excuse me, from 2006, most states expanded their counseling and testing programs using the rapid HIV test and routine testing. So more people are coming forward, knowing their HIV status earlier.

MARTIN: So, you got more people wanting the drugs, more people being told they should get the drugs, less money, less insurance, and just as you said, a perfect storm. And you - recently enough, your office recently announced a proposal to change the income eligibility for the AIDS drug program, that people would have to make less than $21,000 to - annually, to qualify for it. As I understand it, hundreds of people came to public hearings were very impassioned in our opposition to that change.

I'll just read one comment from a woman who identified herself as Karen. She came and said: You know, I can't afford a job. As a mother, I have to choose. I have to provide for my children, keep a roof over their heads, give them food. But if I choose to be self-sufficient, my children will slowly watch me die. So, Mr. Liberti what do you say to somebody like that?

LIBERTI: Well, Florida's following a number of steps that other states also are following in the cost-containment business of ADAP. Exactly one year ago today, we did close the program to new enrollees. A few months after that, we reduced the formulary for HIV drugs from approximately 100 to 50. And one of the things that we did not do was lower the eligibility. So, for the last six months, we've been exploring the issue of should we, could we, or would we actually lower the eligibility in the state of Florida.

We had four public hearings - two in Miami, one in Tampa, and one in Tallahassee - where over 1,000 people came to testify, and it as was crystal clear that pretty much 100 percent of them was opposed to the state reducing the eligibility down to 200 percent, which would affect about 1,560 individuals.

MARTIN: But...

LIBERTI: It is actually not our public health recommendation to do that, and we have not filed a rule yet to reduce eligibility in the State of Florida.

MARTIN: So, Jason King, my guess is people who find themselves in this situation are probably turning to you. What are the people doing who are on the waiting list now? Do they have other sources of medication, or what are they doing?

KING: Well, currently, the only option for these patients is to apply directly to the pharmaceutical companies and that's what I help patients do all day long. And the process can be rather time consuming. Patients actually have to fill out multiple applications to appeal to all the different manufacturers. Say if you have a patient who is on four different medications that complete their regimen, they have to apply to each one of those manufacturers that produces those different drugs.

And every manufacturer has a different income criteria, a different procedure, a different wait time. It could take sometimes weeks for a patient to get all of his or her medication.

MARTIN: And so is it your sense that people are just not taking any medication or they're not getting any treatment at all while this process goes forward? Is that what you think is happening?

KING: Well, I'll use myself as an example. Before actually being familiar with these programs, I didn't know that they existed. And certainly, you could imagine that people do slip the cracks and don't even realize that they can make use of these programs and still obtain their medication, regardless of the fact that the ADAP has an implemented wait list. So, yes, we do suspect that there are many people that just do not have either the mobility or the wherewithal to get to a patient advocate or a case manager to apply for these programs.

So, people are possibly not taking their medication.

MARTIN: And just as a sense of the scope of this, if you don't mind disclosing this, you told us - I hope you don't mind telling us - how much your medication would cost if you did not have - if you weren't enrolled in some program, Jason.

KING: Not at all, I don't mind talking about it. I did a calculation. The two medications that I take are Truvada and Isentress, and I take them every day. And over the course of a year, they can amount to approximately $30,000, without insurance.

MARTIN: That could be the total. That could wipe out your entire income.

KING: Absolutely. And with this - with the possibility of an eligibility reduction, it would be absolutely impossible on my income to be able to afford those medications if I did not have insurance. Fortunately, I do, so I don't have to worry about that. But there are many patients who either have medication regimens where their medication is not covered by their insurance - I just worked with a patient the other day whose - one of his medications was not covered. And we did have to apply for patient assistance.

LIBERTI: And I only take two medications. Keep in mind, we have patients that are sometimes on five different HIV medications. I mean, you could just imagine the astronomical cost of that expenditure.

MARTIN: And Thomas Liberti, just to clarify, now, these programs, these AIDS drug-assistance programs, ADAP, are not entitlement programs. It's not that if you meet certain criteria, you have to be enrolled in the program. Is that - that's right?

LIBERTI: That is correct. It is not similar to food stamps or Medicaid enrollee if you become eligible, which is an entitlement program. Each state gets an allocation from the federal government through the Ryan White CARE Act, and also applies general revenue money or rebate money to come up with their ADAP budget across the United States.

And as we calculate that, then we can figure out approximately how many patients we can take care of each year. Prior to this past crisis with the economy, Florida's ADAP program was open and did not have a wait list for 14 consecutive years. So we were able, in the previous environment, to have enough federal and state money with an active Medicaid program to take care of the amount of patients. Unfortunately, we're not at that situation right now.

MARTIN: And, finally, we only have about a minute and a half left, Mr. Liberti, so I'm going to ask you: What is the - what's the worst-case scenario, here?

LIBERTI: I'm not sure what the worst-case scenario is. I feel like things are getting a little bit better. We're going to do three things to make sure that we help people with HIV and AIDS. We're going to continue to advocate and secure additional funding from the federal government. We're going to maintain, restore and increase resources for ADAP at state - the state level, and we're going to continue to work hard with agreements with the pharmaceutical manufacturers to provide stability, and we're going to argue lower prices are needed.

MARTIN: And, Jason, only a minute left for you: What's your final thought, here? What's your worst-case scenario? Do you think it is going to get better?

KING: I certainly hope so, and I do have faith in Tom Liberti's guidance. The last thing that we would need to do in the case of the reduction of eligibility is take people to Tallahassee and hope this doesn't go through.

MARTIN: Jason King is a pharmacy specialist and patient advocate at AIDS Healthcare Foundation in Florida. He was with us from member station WLRN in Miami. Thomas Liberti is chief of Florida's HIV/AIDS bureau. He joined us from WFSU in Tallahassee. I thank you both so much for joining us. Good luck to you both.

KING: Thank you.

LIBERTI: Thank you.

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