December 1st is International AIDS day. I would like to take a moment to share the silver lining to all the death and loss we have lived with. Or least I have to live with. I NEED to believe that some good came out of all the death my group had to live thru and with.
AIDS brought massive pain and emotional loss to those of us who are left. But I choose to believe they did not die in vain. Here are what their deaths brought us.
1. Increased speed in bringing new drugs to the patients, and then to market
a. Before AIDS, drugs took many many years to get to test and sales phase. Since AIDS occurred so quickly, activists worked with key doctors and regulators to get test medicines out quickly and unverified. People were dying within weeks and months early on in the crisis, and very few were living. Regulators ultimately changed the rules and norms so that medicines could be tested legally long before approval.
b. This process is the one being used now for Covid 19 vaccines. The fact that we have established rush procedures is due to the AIDS crisis. This process has also helped cancer victims. The sheer number of people dying of AIDS early forced a change – something that cancer victims had been fighting for over decades.
c. This needed liability changes and process changes, but most significantly a mind-set change.
2. Increased Patient Control over medicines.
a. Some useful drugs (AZT) were also deadly and poisonous. In previous schemes, these drugs wouldn’t be allowed. But because the alternative was death, these drugs were allowed – and full information was given to patients.
b. To be fair, previous schemes had to think about long term side effects – and effects on child bearing. Neither of these was the case for AIDS in the early days of the plague (it was thought to effect ONLY gay men and some “innocent” people who got gay blood).
c. For the first time (apart from exceptional doctors) the health journey was discussed between doctors and patients. STEREOTYPE ALERT Since doctors first started seeing AIDS in Richer White Gay Men who were going to die, you already had to have an more honest relationship between the doctor and patient. You have to be comfortable with a doctor to talk about gay sex and gay health in the early 1980s. That relationship meant that the treatment journey was disabused in honest. We all knew we were going to die.
3. Gay Visibility and Acceptance
a. If you want to know why so many people are okay with gays and lesbians now, look to AIDS in the 1980s and 90s. Before AIDS it was easy for families, friends and loved ones to pretend like homosexuality didn’t exist. But you can’t hide deaths. Sure some early people lied about why they died. But once families across the spectrum of American live lost relatives, it could be hidden. And suddenly we all saw how people – our friends, our government and ourselves, treated gays as outsiders. Or that there were only a small number of deviants. But gays were everywhere now. And mothers, grandmothers and family stopped letting others devaluing their gay and lesbian children and grandchildren.
There is a lot more. Friends stepped up as family. Lesbians, arguably the least effected group, stood up for gay men across America. Many of us refused to be ignored by society and government. And like the people demonstrating against the Vietnam War, once we realized we did have some power, and people had to listen – we didn’t stop working for others.
This is important to me. I don’t have my pictures of Mark, my ex, right now – we are out of the house for 5 weeks. But it is important to me that he didn’t die for nothing