When your grief is due to a global medical scandal

Author and photographer Kathy MacKay on making meaning from the loss of her husband when he was just 34.

Hi fellow cacti! Today’s newsletter is part of an interview series about how people process midlife trauma and make meaning from their challenging experiences.

NEW!!! I’ve added an audio version of the article, narrated by me. It’s not perfect, but neither am I.

Photos from Kathy MacKay’s book Dying in Vein, about the tainted blood products scandal of the 1980s.

For many of us, the name Ryan White is unforgettable. In 1984, when he was just 13, he was diagnosed with AIDS after receiving tainted blood products to treat hemophilia. He died six years later. 

I was a young child when Ryan’s life story made the news, but as I got older, I remember how the narrative shifted, from one of fear to pity, as the world began to understand how the disease was transmitted. But I didn’t know that Ryan’s death—and many others—were preventable. I had assumed his infection was a tragic but unavoidable risk of needing blood products in the very early days of HIV, before it was detectable. I also assumed that as soon as that risk was known, the problem was immediately fixed.

But as I recently learned from former photojournalist and aspiring memoirist Kathy MacKay, that’s not at all how things played out. In fact, Ryan’s story was part of a preventable medical scandal that ultimately infected tens of thousands of people worldwide–including Kathy’s husband, Dave.

Dave’s story and the lurking medical corruption that devastated their family forms the backbone of Kathy’s as-yet unpublished memoir about her experience. 

It’s a cautionary tale the world needs to know about, especially in light of more recent medical scandals like the opioid crisis, she says. 

Author Kathy MacKay

“We were told it happened, and there was nothing that could have been done to prevent HIV from entering the blood supply” she says.

In reality, a “long series of warnings” had been ignored by drug companies. Even the FDA stalled to protect the blood supply, documents show.

‘It was the only way out’

Back in the 1980s, the young couple assumed Dave’s infection was an accident that perhaps affected a few others, too. They were reassured by his hematologist that he’d probably be fine.

After hearing that, Dave and Kathy chose to get married and start a family, using the recommended precautions to keep Kathy from getting infected. They also chose to remain optimistic, Kathy says, because Dave’s hemophilia was mild and he was otherwise healthy. 

“I just had to believe. It was the only way out. That was my survival tool,” Kathy says of her mindset at the time. They kept Dave’s diagnosis a secret from everyone, fearing isolation and stigma.

At home, she did her best to pretend everything was fine. And for a few years, it basically was. Although he had a couple of health scares, Dave and Kathy started to think he would indeed be a long-term survivor. 

Ten years after they were married, Dave became very sick from hepatitis and died of liver failure. He was 34. Their two boys were four and seven years old. Plunged into deep grief, little did Kathy know that he was one of many other hemophiliacs who started falling severely ill and dying, often from hepatitis, which was more severe in people with co-HIV infections.

But then she got a phone call. 

‘A lot of people looking the other way’

Someone from a grassroots organization called The Committee of 10,000 wanted to know if Kathy would speak to her legislators in D.C. Their mission? To get compensation for the infected victims and their family members, and to get better protections for the US blood supply.

Suddenly, Kathy was brought up to speed about the true scale of the scandal.

“It became this dawning awareness that this was way more than just a batch of bad blood,” she says. Much like the opioid crisis—when Oxycontin was falsely marketed as less addictive and thousands of people died —“it was a lot of people looking the other way.”

Kathy spoke to her lawmakers and shifted into advocacy. As she moved through her grief, frustrated by the lack of news coverage about the scandal, she also started photographing people who were infected and their loved ones, which became the photo book Dying in Vain.

“It helped them feel seen. This is always such a common issue across trauma survivors, feeling unseen, invisible and disbelieved,” she said.

She’s recently helped the Committee of 10,000 secure a permanent home for their large trove of documents exposing the scandal. They will reside next to archives on the tobacco industry lawsuits and the opioid crisis at the UCSF medical school library.

Preserving the history is important. “Even today so few people know about it. I can’t find a doctor or a medical student who knows about it,” she said.

To have loved and lost

Now remarried, she’s pivoted to retelling her story in memoir form. Like many, she’s found it surprisingly therapeutic to revisit the past and unpack it.

“It wasn’t until I actually started writing the memoir that I realized how traumatized I was and still kind of held that trauma inside of me,” she said. “I was trying so hard to live a normal life, I wasn't expressing how I felt.”

Part of that process included revisiting their early days, when she had fallen in love with the boy next door, and he proposed, both of them aware of his diagnosis at that point.

“We had already told each other we loved each other. I had never been in love before and I didn’t want to just throw that away,” she said. “I had to think, ‘OK, can I handle this? …Part of me still said this may not be a long marriage. I wasn’t totally in the clouds. ”

To make her decision, she found comfort in the lines of a poem her mother kept on hand, by Alfred, Lord Tennyson, one that many have found solace from while grieving:

“I hold it true, whate’er befall,
I feel it, when I sorrow most;
Tis better to have loved and lost
Than never to have loved at all.”