Friday, June 9, 2023

"How AIDS activists helped change the course of science"/ "Losing a husband to AIDS- and finding him again"


June is Gay Pride month and that's why I'm posting these articles about LGBTQ.  When you read this, I hope you will have empathy and compassion for them:


Nov. 28, 2016 "How AIDS activists helped change the course of science": Today I found this article by Adriana Barton in the Globe and Mail:



Scientists have gotten credit for muzzling AIDS, and rightly so. Thanks to breakthroughs in the mid-1990s, people with HIV have a chance of living a normal life as long as they have access to anti-retroviral drugs.

But lest we forget, in the early days of the epidemic, researchers showed little interest in one of the most deadly infectious diseases since the bubonic plague. The majority of doctors refused to treat people showing symptoms of AIDS. Governments turned a blind eye even as thousands of North Americans died.

It took legions of patients – many of them at death’s door – to persuade public officials and the scientific community to take action on a disease that would eventually kill double the number of Americans who died in the Vietnam War. 

Prejudice against gay men was largely responsible for the unnecessarily high death toll, writes journalist David France, author of How to Survive a Plague, a book that expands on his 2012 documentary film of the same name.

The 640-page volume is both a painstaking history of AIDS in America and an ode to the ingenuity and courage of the activists who helped change the tide on HIV and, arguably, the course of human history. 

But it also takes readers into the turf wars between rival scientists and the lesser-known battles waged in the lab against a microscopic agent of destruction that ultimately claimed the lives of 40 million men, women and children around the globe.

Speaking on the phone from New York, France explains how AIDS activists helped lay the groundwork for the kind of scientific research and emergency response we rely on today to fight Ebola, MERS, Zika, and the epidemics to come.


Your film on AIDS activism has won awards and a wide audience, including on Netflix. Why write a book?

Well, the film covers only a very small corner of activism and focused on a handful of people. I wanted people to know that much of the way we think of science and medicine – and activism itself – today was given to us in those years of plague. It was a lasting contribution to humanity.


AIDS sufferers were treated like lepers, mainly because so many were gay. How did they get the scientific community’s attention?

They recognized from the start that if they were going to have any hope of a collaborative relationship with science and medicine and government, they had to first help people think of them as human.


What was Rock Hudson’s role?

Rock Hudson’s death [in 1985] was the watershed for the first federal funding for AIDS – and this was five years into what was clearly a fatal infectious disease. The general public knew how to feel emotions for Rock Hudson. They did not know how to feel emotions for the rest of us. It helped that he was a good friend of the president [Ronald Reagan] and his wife.


How did activists end up working with scientists to set research priorities and design better drug trials?

The International AIDS Conference in Montreal [in 1989] was fascinating because everyone wanted to dismiss the activists as just being radical, or embittered by death. It took some really open minds to start listening to what they had to say and realizing how, in fact, the science was being conducted in a way that was ineffective and the policies were working against the research. The activists were targets of that research, so they knew how the research was failing.


Why were the early drug trials, dubbed ‘death trials,’ so ineffective?

Everyone knew what the course of the disease was like on placebo. So patients in a study would test the [experimental] drug through independent labs to discover whether they were on placebo.

If so, they would stop taking it. Often, patients on the actual drug would share their drugs with patients who were on placebo. The research was falling apart, and without a placebo arm, it was taking scientists forever to come up with reliable data.

The patients started to argue that the natural course of the disease could be used as the placebo arm. By adding a parallel track [an additional study arm in which anyone could take the drug], you wouldn’t have people gaming the system.


What were the greatest scientific achievements in the plague years?

Before AIDS, nobody had ever really conquered a virus, much less a retrovirus [a virus composed of RNA that melds its genetic material with the DNA of a host cell in order to replicate). 

The idea that a retrovirus could exist in humans was brand new, and it took visionaries to imagine the ability to wrestle a virus into submission.

Also, we saw breakthroughs in Kaposi’s sarcoma, the HIV-related cancer, with the discovery that some cancers are virally caused. It really opened up the entire field of virology.


What about advances in pharmacology?

In the past, compounds that chemists had created for one reason or another would be taken off shelves and then applied to the disease at hand – it was trial and error. AZT was a drug that had been compounded decades earlier. When that proved ineffective in the epidemic, pharmacologists developed a new approach. 

They found that one of the mechanisms for how HIV replicated was an enzyme called protease, which worked like scissors that would clip into these chains of proteins that would then go on to form a new virus.

So they designed a very complex molecule that would fit into protease like a wrench in a gear and render it incapable of cutting these protein strips. It opened up a whole new era of drug research. 

It’s called rational design. Once they did that, they had a solution to HIV replication. Those drugs are still the essential cornerstone of HIV treatments.


Are the corporate and bureaucratic structures that stymied early AIDS research still in place?

I think what AIDS activism left behind was a much more nimble research machine, and a much more humane one. Now, every major pharmaceutical company in the world has community advisory boards where the recipients of the drugs, the people who rely on the drugs, are representing themselves. 

A couple of years ago, we saw a great co-ordinated response to the Ebola scare. We saw the presence of drug researchers as activists in a way that we first saw in AIDS. In a way, the book is a kind of blueprint for social change.

Editor's Note: A previous version of this article noted that antiretroviral drugs cost less than a dollar a day. While this is true for generic drugs in developing countries, the figure does not reflect the cost in Canada, where anti-retroviral drugs are much more expensive, especially for patients who do not have extended medical insurance.



Jun. 16, 2017 "Losing a husband to AIDS- and finding him again": Today I found this article by Maggie Kneip in the Globe and Mail:


My second child was born two days after Father’s Day in 1990. Three weeks later, my husband collapsed, disoriented and feverish, in a restaurant. Soon, he was lying in a hospital bed with full-blown AIDS.

It’s hard for people who weren’t around then to imagine what AIDS used to look like. It was an epidemic that turned young men old; murdered beauty and promise. You knew someone at work who wouldn’t feel well, you wouldn’t see him for a few days, you would never see him again. 

AIDS made men ghosts. Before he got sick, John was an attentive lover to me, a doting dad to our two-year-old, a gracious son-in-law to my aging parents and a successful journalist. He was home for dinner every night like clockwork. He was someone it was hard to believe could get AIDS.

In the months before our son was born, John had been experiencing a string of nagging illnesses, including intestinal distress and a persistent cough. The many doctors he consulted – because he was “straight,” married and overworked – did not even consider AIDS. They diagnosed stress.

After John’s AIDS diagnosis, I was rushed in for my own test. It remains the scariest thing I’ve ever done.

I asked him how he happened to contract a disease largely transmitted through gay sex. He told me he’d slept with men, which, at the time, surprised me. It was the beginning of a world falling apart.

My AIDS test came back negative: The kids and I had been spared. But nine months later, John died, leaving me asking, “What just happened?”

He left me crying out for him in the night. He left me with many painfully unresolved feelings and unanswered questions. John also left me with two small children and I was determined to raise them free from the stigma of AIDS.

I resolved that I had to keep how he died a secret. No one could know. We never talked about him. I stashed away all his pictures. When the kids were old enough, I shared the truth with them and emphasized why they couldn’t talk about it – or their father.

I then determined to give us a picture perfect life, in a suburban Connecticut house with a white picket fence and a really nice man, a former altar boy and Eagle Scout, no less, filling John’s Italian loafers. I worked in children’s publishing and brought home cute books. We had a rescue dog! Life was good and I was proud of how I’d restored us.

What I wasn’t proud of, though, was continuing to keep John a secret. I wanted my kids to know about their father, who had once been a great guy – before AIDS.

For a while, I found a way to do this by taking them to New Hampshire every summer, to visit John’s grave in a sunny corner of a maple-shaded family plot. It was hushed, peaceful and green.

Beneath the dignity of his tombstone, desexed, sanitized and dead, John could be a father my kids could really respect. He could even be a husband I could like again.

But by the time they hit middle school, my kids didn’t want to go to New Hampshire any more. They didn’t seem to want to do anything connected to their late father.

They left for college at about the same time I lost both my job and my elderly parents. My relationship with my boyfriend also flattened. I began to feel compelled to thaw those unresolved feelings I’d put on ice in 1990.

I read his love letters. I looked at pictures from when we were young, beautiful and smitten. I began to practice saying, “My husband died of AIDS.” I began to write.

Then, in 2009, my daughter graduated from John’s alma mater, Brown University, where the alumni participate in the processional. After the ceremony was over, my daughter surprised me by asking, “Mom, didn’t you think today was sad? I looked at the Class of ‘76 and thought, where’s Dad? Why isn’t he here?”

Three years later, after receiving his diploma from Claremont McKenna College, my son said, his eyes glistening, “Mom, you know who I thought about during the whole ceremony? My father.”

Relieving John of his ghostly status after he died of AIDS has been a long and, at times, painful process. I now know that telling our story honestly was the right thing to do. To relieve John of ghostly status has been liberating.

Recently, my kids and I went to a revival of the musical Falsettos, which deals with familiar issues: a gay husband and father, a man lost to AIDS, a wife calling into the night.

My children and I went to dinner and talked afterward, about their father and about how hard it’s been for so long, to not talk about him, to deny his existence. In telling our story honestly, we have brought John back in three dimensional, human terms. He happened, we happened, it happened.
On Father’s Day 2017, John is no longer a ghost.



This week's theme is about LGBTQ:

"Burden of proof" (LGBTQ immigrants)



"From exes to friends"/ "Ms. Adichie: There's no single story on trans women" (LGBTQ)




My week:


Jun. 2, 2023 Alberta government: I have been doing these Leo opinion surveys about the Alberta election and the priorities the government should focus on.  I picked: 

1. Healthcare
2. Cost of living and inflation
3. Helping the poor and homeless





Jun. 7, 2023 "Dollarama profit jumps to $180M as same store sales grow 17%": Today I found this article on CBC.  I like this store.  The comments are funny and negative:


yes profits rose because they no longer pay cashiers.

I hate self checkouts.

  • The problem is nobody wants to be a cashier.

    1. Embarrassing, this company will be the only one who contributes to an increase of our GDP.

      • Thanks to the ever weakening purchasing power of Canadian retail consumers.

        • I can't step inside one because they reek of cheap overseas plastic.

          • Bear with it. It is a necessity to most Canadians now.

          I wouldn't step foot in one...Walmart either.

          • Fine. But they are a good bet in high inflation times to do well.

          • Just put a paper bag over your head. No one will recognize. This is what a lot of people do.

          • ...it's pretty sad experience, but some locations are better than others. Canadians are getting poorer, dollar stores ( where everything is more than a dollar) , thrift stores and food banks are the future for many. If you think government will take care of your when you retire....I have a bridge for sale just for you !





      Jun. 9, 2023 "Ottawa girl set to become the youngest university graduate in Canadian history":  Today I found this article on Yahoo.  I have read articles about young prodigies: 

      Anthaea-Grace Patricia Dennis is not your typical 12-year-old.

      She is a child prodigy who's about to become the youngest Canadian to ever graduate from university.

      On Saturday, Patricia Dennis will walk across the University of Ottawa stage in her cap and gown and accept a bachelor’s degree in biomedical science.

      She started the program when she was nine, at a time when most of her peers were playing games at recess.

      So how is this wunderkind feeling about the big day?

      "I’m going to be proud. I’m going to hope I don’t fall off the stage," Patricia Dennis said in an interview.

      "I’m going to be happy for myself too, not just for other people. I am proud of myself for getting to this point, despite all the hurdles and blocks that there have been for a person like me."

      Perhaps no one will be more proud or excited than her biggest supporter, her mom Johanna Dennis.

      https://ca.yahoo.com/news/ottawa-girl-set-become-youngest-080000445.html


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