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What Does an ADAP Waiting List Really Mean? A Look at the Deepening Crisis From HIV/AIDS Service Organizations' Point of View

By Becky Allen

July 8, 2010

Waiting lists for AIDS Drug Assistance Programs (ADAPs) are at an all-time high, having grown steadily all year: They're now at 2,090 people across a total of 11 states. An unknown number of additional people -- perhaps thousands -- have lost their ADAP coverage entirely or seen it reduced due to other cost-cutting moves.

Obviously, this has a dramatic impact on low-income HIVers who rely on ADAP assistance to get their meds. But it has also become a major concern for people who work with HIVers at clinics, doctors' offices and HIV/AIDS service organizations. "I think that we're doing a lot of panic control right now. These stories fly so quickly, people get really concerned and take it very personally when their health is at risk," says Beth Parker, case manager of the AIDS Insurance Continuation Program for the Northeast Florida AIDS Network.

For many HIVers and their case managers, the biggest fear is that being placed on a waiting list will mean losing access to medications. But for most people, that isn't the case quite yet. "No one's really going off medication, but there have been times when there's been a delay in getting them their medications as we've scrambled to learn new programs and new criteria. There have been some folks who've missed some doses," Parker says.

Most of the programs that Parker and other HIV/AIDS workers are helping their clients get into are provided by pharmaceutical companies. These programs are designed to help low-income HIVers for a year at a time, and since so many people have hit ADAP waiting lists, pharmaceutical programs' ranks have been swelling. In Florida alone, during the first 30 days of the state's ADAP waiting list, 523 people enrolled in pharmaceutical-based programs.

"A good portion of my time recently has been spent helping patients access patient assistance programs through pharmaceutical companies," says Misty Thompson, Outreach Case Manager for the Utah AIDS Foundation. "It's more difficult and programs are not set up to be long-term solutions. They've offered us a temporary solution to maintain at this point."

Thompson isn't the only one to point out that scrambling to find alternatives to ADAP is sucking up time they normally spend on other duties. "Personally, I would say within the last two weeks, I spent easily 25% of my day researching programs and filling out applications," Parker said. Each HIV medication has its own program, and some drugs have multiple programs, one for people with insurance and one for people without. That means that case managers have to learn about literally dozens of programs. And, since most HIVers take multiple medications, each of their clients has to be enrolled in several different programs.

The funding crisis doesn't only impact HIVers' medications. Thompson says that in Utah she's also had to help clients find alternate programs for dental care, which is no longer funded, as well as mental health (therapy is no longer covered, and mental health medications were dropped from Utah's drug formulary). In Florida, the AIDS Insurance Continuation program (which helps HIVers who've recently lost their jobs maintain their insurance) has had a waiting list since last July.

Though the pharmaceutical and other programs are able to help nearly all ADAP-waitlisted HIVers for now, they aren't a long-term solution. "Many [programs] call every month to see if ADAP is open yet," says Thompson. "They want to stop paying for those patients as quickly as possible." She started helping people enroll in pharmaceutical programs last fall, when Utah's ADAP closed enrollment, and since the programs only last a year, those people will have to re-enroll soon.

"We don't know how long the wait list is going to last, and [the Florida government] is not giving us any idea," says Donna Fuchs, Executive Director of Northeast Florida AIDS Network. "When their eligibility for these programs runs out, we don't know what will happen then. We might have an even bigger crisis on our hands then than we do right now."

Thompson struggled to find a silver lining on the situation. "The one promising thing is that it does look like we'll be able to sustain the program with the client load we're carrying currently" in Utah, she said. "But for all of the clients who are on our waiting list, and who continue to approach us every week, it doesn't look hopeful to be able to place them on that program in the near future."

These ADAP changes and wait lists are serious problems, but case managers have no choice but to continue to cope with them. "This is all new to us," Parker says. "It's extra time, but you have to help the clients through this. Many of them are already frustrated from being told that they're on a wait list ... so case managers absolutely have to take this on. We gladly do, but we had very little warning."

See Also
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More on ADAP Restrictions and Waiting Lists

Reader Comments:

Comment by: Rich Sagall (Gloucester, MA) Fri., Jul. 16, 2010 at 7:37 pm UTC
All the information on pharmaceutical patient assistance programs plus hundreds of other programs is available for free at Each workday over 13,000 people visit our site. We have all the applications on the website.

Our information is ease to access, updated regularly, and free. We gather no information about our users.

You don't have to pay to apply to these programs. Most are easy to apply to and respond quickly.

We also offer a free drug discount card. No registration is required and anyone is eligible to use it. The average savings is 50% with occasional savings of up to 80% or even more.

Rich Sagall, MD
NeedyMeds, Inc.
P.O. Box 219
Gloucester, MA 01931
Reply to this comment

Comment by: Andrew P. (Tampa Bay) Tue., Jul. 13, 2010 at 12:37 pm UTC
Yes, calm down people. Although Florida has 500+ people on ADAP wait list does not equate to 500+ people not receiving HIV/AIDS Drugs. Not only are PAP applications finally become standard, in my 8 county RW TSA/EMA planning council allocates and spends over $2 Million annually on Drugs via Consortium Part B and EMA Part A Ryan White funding.

And as the dollars are needed for Medicines, State/Consortia and Metro Area planning groups will re-allocate funds from the 30 odd other HRSA defined Service Catagories of lower priority to sure up Drug funding.

Simply by utilizing Non-Core Service spending for Priority needs of which Drugs are, no one should go without HIV/AIDS Drugs.
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Comment by: NIKY Tue., Jul. 13, 2010 at 10:56 am UTC
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Comment by: Brian Moore (Somerset, NJ) Thu., Jul. 8, 2010 at 10:08 pm UTC
The NJ ADAP was given a severe setback when Gov. Christie lowered the maximum income level to 300% of the poverty level-- $32,490 a year. In NJ it is impossible to maintain a home and pay property taxes on income of this level. It is also impossible to rent an apartment and maintain a car. With this income limitation, it is necessary to obtain insurance when you lose a job. The going rate for a single person is $900 a month for insurance if you have pre-existing conditions.
As of August 1st, approximately 1,000 New Jerseyans will be removed from the ADAP rolls.
There is no consideration given to how the HIV medications will be paid by the people who need them or face death.

Some of us remember the weekly funerals of our friends before these costly meds ever came on the market. We would all like to be grateful for them, but so many of us will not be able to afford them.

To President Obama, whom most of us undoubtedly voted into office, we need to beg for a realistic and affordable way to manage this crisis. Does it do any good to send AIDS assistance to Africa and other third world countries while we will be spending a good amount of time burying our dead brothers and sisters-- dead because they feel into the cracks of being neither entirely destitute nor wealthy.
These will be the only survivors, and the middle class will be ignored and allowed to die because the highly expensive medications cannot be available to them.
This is happening in the United States of America under the leadership of a man who promised so much and has yet to comment on our plight. Anyone reading this, correct me if I'm wrong. Tell me what options I have. PLEASE!!!
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Comment by: Vickie (Tampa) Thu., Jul. 8, 2010 at 9:20 pm UTC
I urge everyone to call their representatives urge them to support an increase in funding for ADAP.

There are many pharmacutical companies stepping up to the plate and offereing Patient Assistance Programs (PAPs) for people with HIV to get their medications. Case workers need to be educated of these programs.
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