When I was first diagnosed with HIV in 1998 I was devastated. I remember the doctor prescribed my antiviral meds. I was taking 12 pills twice a day. It wasn't until I started working as an advocate several years later that I met people that would stop taking their meds but still monitor their viral load. Now please don't get me wrong, I'm not telling anyone to stop meds. Back then medications were making women so sick. They were getting humps on their necks and stomachs. It was called lipodystrophy. There were not a lot of women involved in research so the meds were geared towards men. It was a a hard time because the one thing that was supposed to help was making you sicker.
That led me to get involved in research programs where I would give blood, even spinal fluid, anything I could do to help the next woman's journey be a little easier.
Well needless to say over the years, even as meds became fewer and fewer, I still had that distrust - or fear. I would not take my meds all the time and I would monitor my viral load and Tcells, making sure my percentage was good (the number that tells you how good your Tcells are working).
Now please don't get me wrong, I'm not telling anyone to stop meds.
It was brought to my attention several years ago that a pharmaceutical company was being sued because they had a medication that was causing kidney damage and bone loss among other issues. I'm still prescribed that medication, but the new version that is supposed to be safer.
But what really upset me was when the lawyer told me the pharmaceutical company knew the first version was bad and was going to cause harm. They had the better version but what they did was give us the bad one knowing it was going to harm us. They made as much money as they could on it until the patent ran out and then said oh, here is a better version. It was all about the money. This lawsuit was one of the biggest lawsuits involving thousands of people who were affected and harmed by this drug. The courts recently ruled in favor again of big pharma and are making it a point to protect them even though they knowingly and purposely released a medication that hurt so many. This has definitely made me lose trust even more.
I'm still undetectable even though I do not take my meds every day. I'm honest with my doctor about this and most of the time I'm met with a doctor trying to scare me into taking my meds. I only recently heard of "elite controllers" when reading a story posted online. I'm not saying that is me, but I truly feel there needs to be more research into understanding how this disease affects people differently. This is why I put my Faith into God, not man, for my health and healing. How is it that no doctor has ever mentioned this to me? Why when I tell them I only take my meds a couple times a month do they not talk to me more or try to understand how I'm still undetectable with not taking a medication every day and they try to go straight to fear tactics?
I'm sharing all this because I could not be the only one. Again I'm not saying don't take your meds, what I'm doing is my journey, my story. I try to eat clean organic food and take vitamins. I like to say I do my part and I have Faith that God will and has done His.
I know by being honest this may upset some people but I have to be real.
Big pharma is a billion-dollar industry. I remember speaking at a pharmaceutical company on December 1, World AIDS Day, one year and I was shocked that they had a dry cleaners, fast food restaurants, even a drug store inside the building. The gentleman giving a tour said it was because the workers spend so much time there they try to make it as convenient for them as possible. Makes sense. I'm not against meds because like I said, I take mine, just not every day. And when I was pregnant I took them every day because I was not gonna take a chance with an innocent life inside me (and twins my second pregnancy), and my children are all HIV-negative, grown adults with kids of their own now. I'm sharing my journey and being honest because I want to learn more and know if there are other women like me. I couldn't be the only one.
Please do your research on medications.
