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Life after death

RIT grad’s book reveals personal insights on a national tragedy

Two weeks after her husband died, Kathy Seward MacKay learned the truth.

David MacKay had been killed by tainted medicine produced by drug companies that had failed to take steps to prevent contamination. She learned that her husband wasn’t the only victim: There were thousands like him.

Added to her profound grief came other powerful emotions: shock, disbelief, outrage. “He didn’t have to die,” she kept thinking. “He didn’t have to die.”

She felt compelled to take some action, and ultimately, the 1982 photo illustration graduate reached for her camera. The result is Dying In Vein: Blood, Deception . . . Justice (Hollis Publishing), a stunning book that tells the stories of some of the people affected by what has been called the “hemophilia holocaust.”

The MacKays

The MacKays today: Ryan, left, Kathy and Dustin.

Gail Maloney Photography

Her part of that story began in 1985. Kathy Seward was a photographer for The Nashua (N.H.) Telegraph when she met David MacKay. He was a special education teacher. He was also a hemophiliac, but his condition was mild. Clotting-factor drugs developed in the late 1960s had helped many of the 20,000 Americans suffering from the hereditary blood disorder. He was young, he was healthy. They were hopeful.

By then, however, the AIDS crisis was all over the news, and the implications for hemophiliacs were alarming. Everyone had heard the story of Ryan White, the young hemophiliac who had contracted AIDS and been unjustly expelled from his Indiana high school. Researchers had confirmed that HIV, which causes AIDS, was carried in the blood. The widely used clotting-factor drugs were made from blood plasma – typically collected from high-risk, paid donors such as prison inmates and intravenous drug users. Within a span of about a decade, more than half of the nation’s hemophiliacs would contract HIV and hepatitis from the drugs. Most would die.

“The miracle drug turned out to be the kiss of death,” says Kathy MacKay.

In late 1985, David was tested and found to be HIV-negative. He was relieved because by then strict blood-donor screening measures were in place. But a year later, he tested positive for HIV and was also found to have hepatitis C – another life-threatening disease.

“I was scared to death,” Kathy recalls. “Scared for him, scared for me. We lived with this cloud over his head. I never knew if forever would be a few years or a lot of years.”

They refused to allow fear and uncertainty stop them from making a life together. They married in 1987. They had two sons: Dustin, born in 1989, and Ryan, in 1993.

“Most of the time everything was normal,” Kathy says. “Dave enjoyed life every day. I could tell, though, that he didn’t plan too much in the future.”

The first sign of serious trouble came in 1996, when Dave got bronchitis and had to take an antibiotic. His liver was showing signs of damage from the hepatitis. He recovered, but he didn’t look the same. The following year, while on vacation in the Bahamas, he went into liver failure. David MacKay died in June 1997 of hepatitis. He was 34.

In the weeks that followed, Kathy began to discover that her personal misfortune was part of a much larger tragedy, one with troubling implications. She read Elaine DePrince’s Cry Bloody Murder, the first book chronicling the hemophilia crisis and pointing out the failures of the drug companies. Kathy became involved with the Committee of Ten Thousand, an advocacy group for hemophiliacs with HIV/AIDS founded in 1992.

She learned that the manufacturers of the clotting-factor drugs had known from the early 1970s that the products carried hepatitis. When techniques became available to treat the products to prevent transmission of hepatitis, the companies did not use them. Even after HIV showed up in the blood supply, the pharmaceutical companies and the U.S. Food and Drug Administration were slow to act.

And the worst blow: Tainted clotting-factor drugs continued to be sold after 1985, when a test existed to detect HIV in blood and strict donor guidelines were put in place. Later, drug companies began using techniques to render HIV virus inactive. As a result of that practice, combined with stringent screening of donors and testing of blood donation testing, no new cases of HIV infection from clotting-factor drugs have been reported in the U.S. since the late 1980s.

All this was confirmed in a landmark report issued by a special committee of the National Academy of Sciences’ Institute of Medicine in July 1995, which found fault with the governmental handling of the HIV crisis in relation to blood product safety.

Ken Baxter
Diagnosed with HIV in 1985, Ken Baxter became a militant activist raising awareness of the "hemophiliac holocaust"

One statement from the report has particular resonance:
“In July 1983, there was considerable reluctance to recall untreated Factor VIII concentrate at a time when much of the supply was almost certainly contaminated with HIV.”

Kathy MacKay believes that her husband became infected by medicine that should have been recognized as unsafe and pulled from the market.

“That was really, really hard.”

As a journalist, she recognized a huge story. She contacted the major media: The New York Times, National Public Radio, the Boston Globe.

“Nobody bit,” she says. “Nobody wanted to do the story. I wanted to expose this, but right then I didn’t have the emotional energy. After about a year, I got my strength back. I decided ‘I’m going to tell this story and I’m going to tell it my way – through photographs.’ ”

She spent about two years traveling around the country, meeting stricken hemophiliacs and their families, discovering and documenting advocacy and hope as well as tragedy. In the year 2000, work for the book received a first place award in the Gordon Parks Photography Competition for documentary photography. Last year, she received a 2004 Individual Artists Fellowship from the New Hampshire State Council on the Arts to help complete the work. Earlier this year, Dying In Vein was a finalist in the medical/health category of the Independent Publishing Book Awards.

For the text, MacKay enlisted the help of Stacy Milbouer, a friend and award-winning writer who has worked for The Nashua Telegraph, Boston Globe and other publications.

Dying in Vein was published in 2004.

“It’s not a New York Times bestseller, but when people see the book they say ‘Why haven’t I heard this story?’ People are moved by the injustice to this community, but the point is that this could happen to anyone. I did this in the hopes that people would pay attention,” says MacKay.

“As a photojournalist, I felt I had a responsibility to show this.”

For more information or to order the book, visit www.dyinginvein.com.

Kathy Lindsley