It is World AIDS Day and I am thinking about the similarities between the AIDS movement of the 80s and 90s and the MBC movement of today. There are so many similarities that the grassroots MBC advocacy group METUP was founded based upon the principles and ideology of ACT UP (including the phrase “silence-death.”)
I’ve recently been re-reading And The Band Played On, which I read for the first time in 2009. Back then, I read it because I was going to Swaziland to do HIV prevention, but now I am reading it because I want to learn lessons about advocacy. There are striking similarities, some of which are explored in the blog of our recently deceased Beth Caldwell. One haunting similarity which stood out to me was how the Reagan-era budget cuts impacted scientific and biomedical research. This is scary to think about in light of the cuts our current *wonderful* president proposed making. Thankfully, from our visit in DC, it seems that Congressional representatives from both sides of the aisle are against cuts to research. And we should remember that scientific funding fell under the Obama administration. (And while that was due a lot to partisan bickering, look at the emphasis in the linked charts that Obama put on energy vs health research. I mean, you need healthy people to develop clean energy, right?)
The stories of the HIV/AIDS survivors of the 80s and 90s in this brilliant article brought up a challenging question for me: if you are lucky to survive a life-threatening disease, what is the collateral damage? These men survived, but there were severe physical, emotional and financial consequences – consequences they are still grappling with decades later. People tell me all the time, “they could find the cure for cancer tomorrow and you could live to 100!” Here’s the thing – even if the cancer-cure fairy visited tonight and cured all cancer, I still have four years of collateral damage. Four years of having drugs pumped into my system, my brain prodded and radiated. If I was cured and could stop all treatment tomorrow, there would still be questions of the effects cancer and treatment had on my heart, bone health, liver, kidneys, fertility, cognitive abilities. Even as my brain MRIs look good, I face occasional localized seizure and left-side weakness. If I do survive the next few decades, I fear early Alzheimer’s. I have sizable employment gaps. I have lost my innocence and many friends. I have had many experiences that should be joyful to young women – engagement, marriage, newlywed life – shrouded by a dark cloud. I was talking to an early-stage friend today about her post-cancer pregnancy and she told me that while she was eternally grateful for the chance to have a second child, the pregnancy was much more physically and emotionally difficult than her first one. Collateral damage is real, even for the lucky ones.
But let’s end this on a happy note – hope. Thanks to the advocacy of our Act Up brothers and sisters, HIV went from a terminal to chronic condition within a few years. HIV and cancer are not even remotely the same disease, but I still gather hope from how much medical progress can change a prognosis. At 24, a newly-arrived Peace Corps Volunteer in Swaziland, I was called to the homestead of a young man who was very sick. I thought he was too far gone. I thought I was going to watch his death play out. I visited him and braced for the inevitable. It never came. He took his ARVs and got stronger. He still experienced collateral damage, but he survived. I hope I will too.