HIV Meds and Big Pharma

Submitted on Sep 1, 2026 by TrulyBlessed

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.

Comments

5 comments

you are NOT the only one and…

Submitted by Ci Ci • 2 weeks ago

you are NOT the only one and i say that with my chest. i have stood in spaces and professed this same thing - the research needs to be done. elite controller? nah, im almost certain that isn't me. take my medication as prescribed, every time (even non HIV medication) - well, that ain't me either. thank you for shedding light into the history and where some of this distrust is rooted. thank you for your participation in the research. we have so far to go.

CiCi thank you so much girl…

Submitted by TrulyBlessed • 2 weeks ago

CiCi thank you so much girl because I feel like no one talks about it. If I try to talk with Dr’s they immediately go to trying scare tactics. I hope more woman research medications as well as holistic treatment. I truly appreciate you CiCi ❤️😊

You are very courageous!

Submitted by boseolotu • 1 week ago

Sarah,

Reading your post this morning touched me deeply. You are incredibly brave for sharing your story.

Your words reminded me of my brother's journey. Only a few years after starting ARVs, he developed kidney failure and osteoporosis of the spine. Even then, we were told that his condition had nothing to do with the medications. It was frustrating and heartbreaking to feel like our concerns were not being heard.

There was a time when my brother came so close to death that his doctor later told me he had practically died. Watching someone you love go through that is something you never forget. His faith carried him through, and witnessing his strength has been a source of hope in my own life.

Thank you for opening this conversation. So many of us have experienced challenges like these but often struggle to find the right support or even the right questions to ask our healthcare providers. As an advocate and activist, I have raised similar concerns in Nigeria regarding substandard ARVs and the impact they can have on our communities.

It can be discouraging, but voices like yours remind us that we are not alone. Thank you for speaking out.

Thank you for your support…

Submitted by TrulyBlessed • 1 week ago

Thank you for your support and thank you for advocating and being a voice for the voiceless. I remember speaking in Washington DC one year and I met a lady outside the hotel. She told me she was from South Africa and if I ever get a chance to go I should because the impact of HIV was so big, children were suffering. It has always stuck with me. Why are we as a country so focused on money instead helping others? Why don’t we give freely if it is going to save lives? I truly feel that seeing this go on for over 20 yrs is where my Faith really became strong. We can only go so far in the natural and big pharma makes so much money off of us sick so I don’t trust in pharma I trust in God first. Now I take an advocate with me to dr appointments so it’s documented what is said and it’s not my word against them, it’s documented by a medical case manager. always ask questions and research into the medications they are talking about. And the big one pray, pray for discernment pray that nothing harms you only helps you and speak Gods Word over you and others. God bless you for all that you do and truly thank you for sharing because I knew I was not alone.

You have every right to be…

Submitted by JustineDD • 4 days ago

You have every right to be concerned what's going into your body, especially after your experience from the early days of HIV. I have also encountered elite controllers and find them to be so interesting. Research definitely needs to be done on how that works. Now that I am 36 I do wonder how this virus will affect me as I get older being that I was born positive. Thats all my body knows is medication. Shoot they may need to Research me. Thanks for sharing.