November 21, 2010
For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.
As I sit here thinking about what World AIDS Day signifies to the world and to me, I just think of all those who have needlessly suffered and died, even though there are medications that could potentially save their lives. It makes me really angry when I think that the cost of the drugs is more important than the lives they could save. When, because of poverty, there are people on waiting lists to get their meds.
I have been fortunate so far, as I don't make quite enough to put me on the waiting list, which is a blessing to me, as I couldn't have afforded to pay the co-pay of my insurance to get my meds. If they change the guidelines in my state, I won't be able to take my meds; in turn I will be forced to not work (like I did just before I started meds).
I remember my T cells dropped rather quickly, and how afraid I was of dying. I remember only having the strength to get out of bed, make a sandwich and then go right back to bed. There are people who knew me then that said my skin had a translucent quality. I'd drop about 300 T cells every time I had my labs done.
After they went from over 1,300 to 319 in about a year and a half, my doctor put me on meds. They are amazing. I got better very quickly and now, over five years since then, I go to school and work full time. Although I have noticed a few things, like the PI paunch, fatigue that grows each year and the short-term memory problems that have made it so I've failed my algebra class once and dropped out three times. It is so frustrating, as I have always been a straight-A student. I got my first C in prealgebra and then my first D in algebra.
So there are some things that aren't pleasant about taking meds. But I wouldn't trade not having access to them. They saved my life. So I think of those affected and infected by this disease and it hurts my heart that so many of them are not able to have this opportunity, and it all comes down to money.
I guess I am old fashioned. I know that it costs money to develop and market these drugs, but how can anyone with a conscience look at themselves in a mirror every day and know that if it weren't for the money issue, hundreds of thousands of people worldwide would be able to live productive lives?
Recently, at a U.S. Positive Women's Network meet-and-greet, I had the opportunity to express this to a member of the policy committee at the CDC (U.S. Centers for Disease Control and Prevention). I told her, "Yes, I believe testing is a great preventative tool, but in states where there are waiting lists, we tell them, yes you have the disease, but there is no money to assist you in getting those lifesaving medications should you need them." Obviously, this is something I spend a great deal of time thinking about.
Until just recently, we had a wait list of 10 people. Now that may seem low, considering the numbers there are in other states, but as one of only a few women in my state who are infected, I think each person counts. We are a low-incidence state so we don't get as much money to work with, but because of our amazing staff at the Utah State Department of Health Communicable Disease Program, we have rapid testing all throughout the state and we also have done an amazing job of reaching populations who are disenfranchised.
I lost many friends in the 1980s to AIDS and I remember them to this day. I have gone to our local ASO and seen the huge scrap book of people whose obituaries are there. Many of these people were my friends and it makes me so sad when I think of the amazing people they were. The world is lacking some very valuable citizens. That is what World AIDS Day brings to mind. I know it is a bit morose, but there is a bright side: that many people are getting tested who have never tested before. And it has been proven that once we test positive, we, as a whole, tend to protect those we may possibly expose to the disease.
We need to get some awareness up. I would like to see a movie that is about a woman whose husband went outside the marriage for sex, even once. And she found his medication, looked it up on the Internet and then went to the local health department, terrified, to be tested. This actually happens to women. I think we need to get awareness out that it isn't just "THOSE people" who can be infected. We need messaging that lets the elder population know they can be exposed.
So, I think there are a great many things that come along with thinking of World AIDS Day -- a day to remember those who have passed, as well as celebrate the fact that today you can live with HIV.