I remember it like it was yesterday. Back in 2004, I took an HIV 101 class at the correctional facility I was in, and they offered free HIV testing. When my result came back positive a week later, I was confused and just wanted to die. Not only was I HIV positive, I was also battling depression, drug abuse, domestic violence, incarceration, family issues, and a lot of bad choices I had to face up to. When I was released from that awful place I wanted to try and change, but change is not so easy when facing so many things at once. So I continued on that path of destruction for another three or four years.
Since the day I found I had HIV, I have always been very open about my status, but very fearful of HIV medications. I had heard so many horror stories from my HIV-positive friends about the side effects that the meds can cause. So I was happy that I didn't need to go on them, based on my CD4 count. Then, in March of 2010, my CD4 count dropped and my viral load spiked. My doctor, Mark Call, told me it was time for me to think about going on medications. He was a great doctor to talk with and very helpful. Since I was fearful and had a lot of concerns about side effects, we decided on Truvada and Isentress. It turns out that my fear was silly, because those meds have made me feel better, not worse. I am not so tired and exhausted all the time, and I am a better person to be around.
My doctor knew that the South Carolina AIDS Drug Assistance Program (ADAP) once again had a waiting list because of funding cutbacks. So they worked it out for me to get a three-month supply of medications from Gilead, through its Patient Assistance Program. I was approved based on the fact I did not make enough money at work, and I didn't have any insurance.
I then went to my case manager at AIDS Upstate, Marcey Chatman, and she explained how to apply for ADAP. Marcey and AIDS Upstate are really great - they have helped me a lot along the way. They have gotten me counseling, housing assistance, job hunting assistance, even a food pantry. Anything you can think of that you may need help with, they have it to offer - but they've been affected by the South Carolina budget cuts as well.
About a month after I started my medications I received a letter in the mail that stated:
Dear Ms. Bell-May,
This is to acknowledge receipt of your recent application to the South Carolina Drug Assistance Program. Due to limited funding for this program we currently have no openings available. Your name will be placed on our waiting list, and as soon as possible we will get you enrolled in the program. You will be notified in writing when an opening occurs.
I was expecting the letter but I guess I was hoping that I would somehow get something more than just a short letter. It seemed so final, like someone just handed you your death certificate. The fear that I had overcome returned all over again. Now I sit and wonder what happens next. I have called my case manager, mentors, and everyone else, but they only know as much as I know. Without the help of the legislators what else can we do? It's not like we can change the outrageous price of the drugs, and it's not like we can get them for free. So I am left to sit and wonder: will I get my medication or will I have to be like the people who have already died on our waiting list? I am 29 years old and I want to be able to live a healthy life and be treated equal to everyone else.
I don't know what will happen when my three-month supply of medication runs out. I'm worried because if you miss doses you build up resistance and the medications will not work anymore. There are only so many regimens to choose from, and so many times you can change before you run out of options or they just don't work anymore. And the side effects I worried about may be more likely on other regimens. Also, I'm on a two-pill-a-day regimen. How would you like to have to take four or five pills a day? That's another thing that could happen if I become resistant.
All this just makes me want to fight even harder. I don't give up as easy as I once did. The legislators do not realize that when they cut the budget they are letting people like me die. You see, I have come along way. I am the mother of a daughter, I am a daughter, a granddaughter, and a sister. I am an employee, a taxpayer, a registered voter. I am clean and sober, and I am an advocate. I have done many speaking engagements. I have stood up for what I believe in. I have spread the message of the HIV prevention measures that our next generation can take. I have empowered myself and other people with HIV to advocate for themselves. I have became part of a women's health advocacy network called P.O.S.I.T.I.V.E. VOICES (Proactive, Optimistic, Sisters, In Touch, Involved, Validated and Empowered), and I am also a peer educator. I want to live life, be treated equally, and be remembered for what I do even when I'm gone.
Don't the legislators know that it costs less to treat this disease now instead of later, or do they just not care? Providing medications to patients is cheaper than the hospital stays it will create for them later if they do not get their medications. It is also an increased risk to our communities if HIV is not treated now, because it could lead to more HIV cases later. It will lead to more PWAs on disability because they can't work, and more people on Social Security, which already is a problem. This will ultimately lead to what they are trying to prevent: more cost to taxpayers.
All of South Carolina came together and formed a task force of AIDS service organizations, consumers, and PWAs, and even after all our collective efforts, the legislators still cut our budgets by millions, and created the ADAP waiting list. Our list is approaching 100, and already one person has died. If we don't get the money we need 900 people who are already getting their meds from ADAP will have to be taken off, creating even more problems for our state. We are going to have to stand up and be strong or the South is going to fall, with injustice for us all!
My doctor knew that the South Carolina AIDS Drug Assistance Program (ADAP) once again had a waiting list because of funding cutbacks. So they worked it out for me to get a three-month supply of medications from Gilead.
I have stood up for what I believe in. I have spread the message of the HIV prevention measures that our next generation can take. I have empowered myself and other people with HIV to advocate for themselves. I want to live life, be treated equally, and be remembered for what I do even when I'm gone.