Thoughts about hope and hemophilia...
Kathy MacKay met David in 1985 when she moved to Nashua, NH. She referred to him as "the boy next
door." They sparked up a relationship pretty quickly, and that is when she learned he had hemophilia.
She infused him three times early on and stated that she did not know if he asked her to do that because he just wanted an excuse to come over or if he really did need her help. She said that she always ac-
cepted David's Hemophilia.
They had read about the Ryan White story in the news and knew about the issues with the blood supply.
Kathy asked David if he had been tested for HTLV-III or now know as HIV. He said he tested negative. So
she did not think much more of it because the blood supply was allegedly safe. A little under a year later,
he was tested again, and at that time, he tested positive. His doctor then offered her a chance to ask
questions because they were both concerned. Kathy immediately made an appointment to address her
David's doctor said he wasn't concerned about him progressing to AIDS at the time because of his infrequent infusions. Also, they found out he had been exposed to Hepatitis B and C, then referred to as non-A, non-B. Again, the doctor told them there was little to worry about. Kathy remembers him saying "all hemophiliacs have been exposed to Hepatitis, and it only affects a small percentage of patients. It is an acceptable risk." Kathy heard what she wanted to hear from the doctor. Kathy reflects, "I wasn't smart enough then to really think about what that meant. I heard what I wanted to hear about HIV, so I think in my head, I just accepted what the doctor said." This was before the internet, and doing research was not easy.
As time went on, David was doing well, and he proposed to Kathy. They married in August of 1987.
Every once in a while, his T-cells would dip a little bit, and they would get nervous, but they always
bounced back up. David was asymptomatic and never met the criteria for an AIDS diagnosis. Because
their future was looking bright, they decided to start a family. They had two boys: Ryan, who is now 27, and Dustin, who is now 31. They took all the necessary pre- cautions to minimize the risks of Kathy contracting HIV. They made it through both pregnancies, and neither Kathy nor the children contracted HIV. Kathy had to be tested frequently. "I lived my life being tested for HIV, but I lived my life."
In the summer of 1994, David had a bad hip injury and could not work his summer job as a camp counselor. He was a special education teacher and was really looking forward to working at summer camp that year. Due to his bleeds and a series of respiratory infections, it caused him to face Hemophilia and HIV's circumstances even more. It was during this time that David started to have issues with depression. For the most part, he kept his feelings to himself. In retrospect, Kathy wishes that David could have shared his fears and worries more openly.
When Kathy is asked, "what was more of a challenge," hemophilia or the viruses, Kathy said it was the viruses that really made her upset. "My life had never been perfect. I always faced challenges along the way.” it was just a challenge, but the viruses could have been prevented. Kathy goes into greater detail on how the blood products became contaminated and how the psychological effects impacted the people in her upcoming memoir, "Unacceptable Risk."
David passed away from Hepatitis in 1997 due to liver failure. It was devastating because it looked like
he was going to become a long term survivor of HIV.
David was never involved with the hemophilia community. Kathy stated, "He just wasn't an organization
kind of a person." But after they married, she joined NHF. She was not very involved but did keep up
with the literature that was sent out. They knew people were dying over the years, but they were not
aware of the extent of it. David preferred to deal with it in his own way, so he never joined any support
groups. Right after he died, the Committee of Ten Thousand (COTT) contacted Kathy and asked her to
go to Washington to speak with her U.S. senators about legislation. She, along with others, advocated
for financial relief for people who were impacted by the tainted blood supply and contracted HIV. This
effort was ultimately passed as the Ricky Ray Hemophilia Relief Fund Act of 1998.
When David died, she was a newspaper freelance photographer. She had connections in the news busi-
ness, and while advocating for the Ricky Ray Act, she saw the whole story as something that should be reported in the national media. So for the first year after David passed, Kathy worked hard to get this story out. She wrote press releases and sent them to multiple media outlets. While three local newspapers picked up her personal story, she had hoped for national media outlets to uncover this great injustice.
When she was not getting the response warranted for such an outrage, Kathy decided to tell the story
through her photography. She wanted to show the human toll of the decisions of those in power who
contributed to the production and sale of tainted blood products. Kathy got to work and recruited her
best friend, Stacy Milbouer. They started compiling stories and photographs for the book, Dying in Vein:
Blood, Deception... Justice.
Being an advocate and getting involved just means that you give what you have. She encourages people
to get involved in the community and share their time and talent to help others whenever possible. Not
everyone has the same skills, time, or money, but the collective effort of a group of people from different
walks of life, giving their talent for the same goal is inspiring. Kathy wasn't trying to change the world as
much as she was willing to use the skill she had to make a difference. She did that and so much more!
"The reason why the blood supply is as safe as it is today is because of what happened to the he-
mophilia community, and they deserve the credit." Kathy MacKay
Kathy has decided to update her book Dying in Vein and is writing her memoir. She says that "not only
do we need to preserve history, but there are also still so many people still suffering from the after-effects
of HIV and Hepatitis. Many hemophiliacs can't work because of their illnesses. There are a lot of financial
problems, PTSD, and depression." She goes on to say, "I just want to stress that this issue is still out
there. There is some frustration among people that the responsible parties never really paid for their sins
or apologized. Some people just feel like they haven't had closure." Kathy says that healing is a process.
She thinks that her memoir will be able to do that for her because she is processing everything in a way
she didn't before.
Kathy learned from the experiences with her husband David, that the hemophilia community is an outlet to talk about what you are going through emotionally, mentally, and physically. "Do not hide your feel-
ings," she says, "It is okay to feel weak. People are there to help you." Kathy says she is optimistic about the future of our community. "I am excited to hear about new therapies, including gene therapy. But having lost a loved one from a new therapy that was unsafe, I caution hemophilia families to do their homework and make informed choices. It's okay to question authority. Most of us in the 1980s didn't know to do that, and we were given biased treatment information. It's comforting to see younger generations' willingness to look at the hemophilia community's tragic past and understand its contributions to blood safety and product safety. It's important to tell and remember these stories. We must remain forever vigilant."
Kathy MacKay's book, Dying In Vein, depicted many people's stories through photographs that she took. She showcased her husband, and many others, suffering and dying from contracting HIV and Hepatitis from the bad blood era. She will be releasing an update to Dying In Vein along with a memoir. Her working title for the upcoming memoir is Unacceptable Risk: A Memoir of Love, Marriage, and Tainted Blood. Above is a little snippet into her life and what she went through with her husband, David. Keep an eye out for this book and others on our website at www.hopeforhemophilia.org.