Hi all, as an aging member of our community I have seen and dealt with a lot of issues.
Yesterday during a group conference call regarding health and aging with HIV, I learned that a drug I took for my HIV back 20 years ago was the probable cause for my bout with Dementia.
While I understand that the drug manufacturers are pushing these drugs out with FDA clinical trials that don't run for many years, and I am grateful for drugs that have kept me alive, it's not the whole picture. My quality of life is.
I am angry and sad that when they discovered this drug causes side effects that damaged my brain they didn't reach out to me or my provider and do the right thing. I am now, 20 years after the dementia started and 10 years after they supposedly discovered this major side effect, just hearing about it from a study nurse. I lost several years of life due to this drug. I had to go on disability, couldn't even read a child's book, couldn't drive, lost my independence and then my marriage.
I hear from some of my HIV peers that their providers tell them just to deal with the side effects, don't question the fat gain, or the nausea, or whatever because we should be grateful to be alive.... Well sure, there's nothing wrong with being grateful and we should be grateful and doing our part in taking the best care of ourselves with proper nutrition etc. But when the treatment for one disease is causing serious illness thru it's side effects there is no quality of life, and when that leads us to stop taking the drug all together it's a problem.
I think the drug companies have been making some serious cash money at our expense and not taking responsibility for the damages being done as they go along. Honestly, I think there should have been a cure by now and that is probably hiding in some vault somewhere because making money off chronically sick people that depend on their drugs is a gold brick paved highway for drug companies.
I am just another crack in the pavement to them, they'll just keep making their drugs and when I become a pothole they'll fill me in with some other drug and keep right on going.
I wonder what else will pop up as I age. But here I am a prisoner of my disease, and a prisoner to the drug companies.
Please question your doctors, please ask the pharmacist to explain side effects. Check out the clinical trial results and know that you're worth more than just a pill that keeps your virus at bay.
Don't settle for their excuses, PLEASE speak up for yourself and your sisters in HIV.