Waiting for ADAP
I have been HIV-positive for 20 years and, because of a sporadic work history since my diagnosis, I've used the North Carolina AIDS Drug Assistance Program (ADAP) on occasion. I had to use ADAP again two years ago when I went on long-term disability. The nausea and diarrhea were constant, and the dosing schedule wouldn't allow me to work. When I went on long-term disability, my insurance ended. I applied for Medicaid and, for the first time, encountered an ADAP waiting list. I was on that waiting list for three months.
When my doctor prescribed the new medications I needed at the time, I wasn't sure how I was going to obtain them. I didn't have any money or income. My doctor just gave me the prescriptions. That was it from him. The nurses pointed me in the direction of the local AIDS service organization (ASO) to handle the ADAP paperwork and gave me some information about drug company patient assistance programs. So I went to the ASO for help and, after sending my ADAP application to the state agency that administers the program, I was left in limbo.
I'd been prescribed -- and needed -- Kaletra, Ziagen, Zerit, Viread, Bactrim, Zofran, promethazine, Wellbutrin, and something for high blood pressure. With major depression, constant fatigue and nausea, a CD4 count of about 90, and a viral load of 75,000, my health was somewhere between fair and not so good. I was somewhat lucky -- the wait didn't make my HIV any worse, although it made me even more depressed.
ADAP and Medicaid in North Carolina -- and other states -- are two different programs, and you're encouraged to apply for both at the same time. The criteria are usually similar for both, but not the same. In a lot of cases, you're denied Medicaid and continue to wait for ADAP to come through.
This is when my persistence came in to play. I went back to the clinic where I was treated and asked what to do until I was approved for the meds through ADAP. I figured out the system mostly by myself. I went to the pharmacies at the clinics when I didn't feel like going, stood in line, and asked a lot of questions. Of course, the main question was -- What am I going to do?
At this stage, I had to rely on the drug company patient assistance program for each medication. I had to fill out a trail of paperwork for each one until ADAP or Medicaid became available. I also had to go through a similar process for medications for depression at another clinic. During the wait for ADAP, before the patient assistance programs kicked in, I was in limbo for a month or so. I was approved for one medication at a time through the patient assistance programs -- they kind of staggered in. It's hard to tell how many patient assistance programs you've applied to unless you know which company makes each drug. And when you're sick, you really don't care. The letters would come, I'd glance at them and then file them or throw them away. All of the drug company programs were about the same except that some took longer than others. You don't really know where the delay comes in -- the company, the caseworker at the clinic, or somewhere in-between.
With symptoms of pneumonia (a dry cough and loss of appetite), major depression, and not knowing exactly what a case manager's role was, obtaining the needed meds was tedious and disorienting. I dealt with a confusing system, going from clinic to pharmacy to ASO to the local social service agency feeling like crap, always on the verge of either throwing up or running to the bathroom.
What was most disheartening for me was that I was already sick, confused, and uncertain how my diagnosis of Pneumocystis pneumonia (PCP) was going to play out, knowing that particular opportunistic infection had caused many deaths. I couldn't get the medicine I needed and worried myself into a frenzy.
Luckily for me, persistence paid off and I learned how to use the system. But I have friends and associates who haven't been as lucky due to lack of knowledge.
When my closest friend here in Charlotte was recently diagnosed, I went the same route for him, and the wait was even longer. Now I advocate for people who have to use ADAP and use the insight I gained to help others who aren't as knowledgeable about the system as I've become. The economics of the state of North Carolina and the Piedmont region I live in also contribute to the problems. In this area, when someone is diagnosed with HIV, prescribed a regimen, and insurance isn't there, you have to rely on the drug company programs or donations for medications from some charitable organizations until you move up the ADAP waiting list.
But what is one to do when you may have to wait for ADAP and the drug company programs and you're sick at the same time? Due to a lack of jobs in the rural areas, there aren't enough charitable contributions to go around for medicines. I've seen people get sicker while on the ADAP waiting list.
My advocacy work today is meant to help lighten some of the worry for people in similar situations and help educate the government about the need for access to these meds right away. Believe me, those waiting lists can mean the difference between life and death, especially for people who are diagnosed with an opportunistic infection at the same time that they test HIV-positive.
I learned a lot about advocacy when I participated with Save ADAP in February, lobbying Congress for more funding. Save ADAP is a grassroots organization made up of people from across the United States who lobby Congress and state legislatures to adequately fund ADAPs throughout the country. We send letters to our state and national representatives asking for funds to eliminate these waiting lists, make telephone calls to their offices, and take trips twice a year to lobby our representatives' and senators' offices in person. To join Save ADAP, go to the Web site (http://atac-usa.org/adap.html).
The most important thing I've learned is that this disease is most devastating to people with little knowledge of a system that needs lots of fixing. Without adequate funding, a good case manager, or someone to go the distance for the less fortunate, there will be many unnecessary deaths from HIV/AIDS.
I'm doing okay now, health-wise anyway. My CD4 count is above 300 -- higher than it's been for a good eight years or more -- and my viral load is undetectable. I still take my meds (with never-ending side effects) and haven't been hospitalized. I now have Medicaid, which makes it easier to get the medicines I need.
It hasn't been HIV that has caused me the most harm, it's been the bureaucracy of HIV/AIDS -- ADAP, Medicaid, housing, and Social Security (I'm still waiting after applying two years ago). And the solution is more funding for these programs. Hopefully some change will come about. This is what I pray for -- CHANGE.
Henry E. Dendy is an HIV/AIDS educator and advocate living in Charlotte, North Carolina. He advocates with SAVE ADAP, works with the local Community Planning Group (CPG), the local consortium, and various local and regional speakers' bureaus.