sharpthinking

[sharpthinking]

Hemophiliac AIDS Memorial Circle, at the AIDS National Memorial in San Francisco. November, 2021

My mom, brothers,  sisters and I were supposed to visit together in March, 2020. So I didn’t bother to stop by when I visited SFO in February, 2020. When back in the Bay Area on business in November, 2021, I stopped and reflected on my father, mother, and siblings. And the heart breaking secret we kept through most of the 1980s, until my Dad succumb to AIDS on May 3, 1990. It might be ironic that we didn’t get here for the first time together because of a pandemic. A poetic nuance that something airborne closed down a trip to remember a good man who died from a blood borne disease.  These pics are from the Hemophiliac AIDS memorial circle within the National AIDS memorial. We are proud to have my fathers leadership in the formation of the Great Lakes Hemophilia Society recognized here; like 90% of hemophiliacs alive in 1980, AIDS killed him.  Having me as a son, I still think his odds were 50/50 until his death.

Why did so many hemophiliacs die from AIDS? tl;dr- the life saving factor VIII blood product hemophiliacs at that time used generally exposed them to ~20,000 different peoples blood because of the manufacturing process. By 1983, a heat treatment of that product was shown to remove the AIDS virus from blood. I use 1980 as a benchmark year for hemophiliacs because AIDS wasn’t even described in the scientific literature until December, 1981 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917149/) . 1982 is when it started to be recognized as blood born.

There are variations (wide variations) in the estimated percentage of hemophiliacs alive in 1980 who died of AIDS. The hemophilia community generally puts it at 90%.  This article above uses death certificates to say 40%. I have not looked up my own father’s death certificate, and do not to this day know what it says. People were scared to death of AIDS through the 1980s, though, and cooperative doctors almost certainly obliged a family’s wish for privacy within the small, tight knit community of people with Hemophilia.

What made being the child of a man dying from AIDS in the 1980s scary? “During the mid 1980’s, many hemophilia families became isolated due to fear of discrimination and persecution of being identified as HIV/AIDS positive. Other families with hemophilia turned to action and demanded information/answers on why this had happened” (https://www.hemophiliafed.org/news-stories/2014/03/1980s-hemophilia-hivaids-hepatitis-c/).

Reasonable people were scared shitless. I recall myself as an adolescent shaving for the first time, and borrowing a chalk like pencil from my father’s medicine cabinet to stop the bleeding where I cut myself. My mother saw me do this, took the chalk like sticks, and threw them all away. I had read a Newsweek article about AIDS shortly before that, and put it all together. That was 1983. I do not know when the rest of my siblings understood why dad was sick all the time exactly, but I questioned my mother point blank, got an honest answer, and never revealed what I knew to any of my siblings, and only a small number of close friends before his death. In the decades since the storytelling comes easier. I have less to lose, and idealistic hope that sharing is useful.

One utility I advocate is the lifting of ongoing restrictions on blood donations from openly gay folks. These restrictions can trace their lineage back to the traumas that laid waste to a generation of hemophiliacs whom had only started living nearly normal lifespans through the miracle of Factor VIII in the decade before AIDS (https://www.ncbi.nlm.nih.gov/books/NBK232419/ and https://whyy.org/articles/blood-plasma-donation-policies-reflect-fears-born-in-an-earlier-epidemic-hiv-in-the-1980s/). “Never underestimate the power of a small group of determined individuals to change the world”, said Margaret Mead, adding, “Indeed, it is the only thing that ever has.” Today, hemophiliacs use synthetic blood products, and the restrictions on blood donation are in large measure a byproduct of  activism from the hemophilia community during a time of existential crisis. Now, it is time for them to be dropped. The panic that led to these rules is part of my lived experience, but they are no longer necessary to assuage panic. 

The panic and fear were real for me personally, and I guarded what I knew very closely for a long time. And that was not all simply because AIDS was frightening to others. AIDS was associated in the public mind with homosexuality, and to a large extent it still is. Some time in the past 3 decades the first question I’d get after disclosing my father died of AIDS stopped being, “was he gay?” At some point in the 1980s, before my father died, I decided I learned a lot more about other people if I said he had AIDS, full stop. The sample is small, and I doubt the people I trusted did not already know my father was a hemophiliac. Nonetheless, the first question varied little. My father had a death sentence and if I shared that with you the questions did not matter. If I shared it with you, I needed to. I needed you.

I cannot fully piece together how AIDS being a “gay disease” worked into my thinking because AIDS was terrifying to others all by itself. Somewhere on my path I jumped from 12 years of Catholic school in Milwaukee’s social justice oriented archdiocese to the University of Wisconsin. I was an adolescent figuring out my own sexuality in a sea of thousands. I arrived on a university campus during a time when AIDS and its transmission and prevention vis a vi sexual intercourse was still being figured out. It was not “casual sex” time, it was “paranoid sex time”. At a state university once described by Wisconsin’s governor (Lee Sherman Dreyfus) as “15 square miles surrounded by reality”.  I was an adolescent, and it was just all about figuring out me. I landed as a an ally of the LGBTQ+ community at some point after figuring out my self.  I did not walk through it all bigoted or woke, but I was curious and scared. I ended up with a lot of college friends in Women’s Studies and Music. I think because  from where I sat, they had their shit more figured out, and I figured it would rub off. Put differently, those were two majors I did not want to have to answer to my maternal grandfather about.

Closing in on 4 decades since it all began, I think the biggest effect on me, aside from losing my dad, is an enduring lens for risk assessment in my life choices: some shit could kill you tomorrow: what are you afraid of?

#hiv-aids #hemophilia

[sharpthinking]

The United States no longer has a national pandemic response task force. The Centers for Disease Control are forbidden from performing their ordinary national coordination function. States are bidding against each other for tests, personal protective gear, and ventilators.

Without a coordinated response to the pandemic, US Citizens working at low wage jobs no longer have them, so they have lots of time and no money.  People of color are reminded how badly some police treat them. White folks have a renewed sense of outrage that the “other” is why they have low wage jobs. Peaceful riots are ignited by provocateurs. the USA is on fire.

Phase Two: US Troops rolled into Washington D.C. yesterday, and POTUS is seeking context and justification to turn our troops against us nationwide.

If you have a better metaphor to coalesce the whole of what is occurring right now than the band Cake covering the Black Sabbath song “War Pigs”, bring it.

[sharpthinking]

The CDC Pandemic Playbook

The United States is, according to our constitution, the land of the free and the home of the brave. There’s even some smart folks here who put together a “pandemic playbook” just in case, you know, there’s a pandemic. The Trump Administration does not want you to see that playbook. Most likely that is because the people in the Oval Office do not understand most of the words.

http://cdc.guillotine.io/Playbook.pdf

As an act of contempt for Donald Trump and his desire to keep this playbook out of the public eye, I have posted a leaked copy of it on a Finnish server. Copy and repost for freedom and the public good in the face of a heartless, insane tyrant.

Be well.

[sharpthinking]

The US Government’s Global Pandemic Aid to Citizens: Tigers, and Porn and Guns, Oh My!

My family is goddamn fortunate. Though I do I worry about my niece who opened a dog grooming business, my nephew who quit his grocery job, and countless others in my community. I worry about my cousin, the nurse, my mom, my in-laws, my brother the police officer, and my brother the doctor.

I worry about all the people who lost their jobs and health insurance in the middle of a global pandemic. My white, middle class family is fucking lucky. Yeah, we work our asses off, but we **always** had backup, and we were actually well parented (I will not confess this to my mother, just in case I need to use guilt in the future 🤣). We were better parented than what is reflected in the Wells Fargo memes my hilarious, but sometimes white privilege avoiding brothers, and many others, are sharing.

Here’s one:

I fucking guarantee you the guy laid off from my donut shop is using that money to pay rent, and probably eating raman noodles. He’s not buying a goddamn tiger. If he’s buying any animals at all, its chickens, so he can breed and eat them. Or guns, because our people live in fear of the “other”. A fear our President, Donald Trump, stokes to rally votes.

And nobody’s buying porn, because PornHub is giving away premium subscriptions during this international crisis.

Here’s Another:

Rebuilding What was Taken

This will not be an easy time for the world. Its even harder in the USA because we spent the past 40 years deconstructing social supports in our society, largely through divisive politics. People are dying. People are scared.

To radically reconstruct the USA, I propose the following policies:

1. Roll back all corporate tax breaks from the past 30 years

2. Implement a 10% tax on all individual or corporate balance sheet assets in excess of 10 million dollars for the next 3 years, and follow that up with annual corporate income tax rules similar to those from Lyndon Johnson’s presidency.

3. For the next 24 months, provide all Americans with “Medicare for all” as an emergency measure to prevent bankruptcies for people who lost their jobs and health insurance, and then got COVID-19

4. For the next 12 Months, provide all  Adult Americans with a guaranteed minimum income of $15,000. Reduce that income for every dollar a person makes, including the 15k, that puts them above the poverty line in their locale.

5. Nationalize internet services and invest heavily in providing legitimate high speed connections for every American. Students who are not in homes that can afford good internet are having trouble.

6. Nationalize our banking system. Nationalize health insurance. Permanently.

7. Restore Obama era Green Energy infrastructure initiatives.

8. First team of scientists to develop a COVID-19 vaccine that can be manufactured each, individually, including graduate students, receive large NIH grants.

9. Double the budgets of NIH and NSF. Hate pandemics? Roll back our decades of research budget cuts.

10. We need to keep Kevin Bacon safe.

Be well, be cool, drive sober, but only when you need to.

Sean

PS: Tiger porn is a strange obsession of the American Right Wing. If they remade The West Wing with Trump in Charge, I promise you these two characters would be in the show.