Kathy Shares Her Voice

By Kathy MacKay

Every so often, important issues arise that remind us of the importance of individual voices to protect the health and well-being of our community. That time is here––now––with the current administration’s assault on critical HHS programs and functions as well as the current 2026 budget proposals that may leave millions of people without affordable health insurance. This moment causes me to reflect on the contaminated blood era.

In my recent opinion piece in STAT News, I wrote: “Weeks after I held my husband’s hand as he drew his last breath, my 4-year-old son, Ryan, jumped into my arms and asked, ‘Why did they give Daddy the bad medicine?’ My heart sank. Ryan had overheard me discussing the shocking details of the death of my husband, Dave, a beloved special education teacher, in June 1997. I’d just learned how pharmaceutical companies had sold blood-clotting products approved by the Food and Drug Administration (FDA) that were tainted with HIV and/or hepatitis viruses to people with hemophilia and other bleeding disorders for decades beginning in the late 1960s.”

While squeezing Ryan tight, I said, “Some people made decisions that harmed Daddy and others.”

Bad decisions are being made today by those who shape public policy. The clock is ticking, but we cannot give up.

My crash course in grassroots activism came weeks before Ryan asked me about the “bad medicine.” Until then, I was living my life and not involved in the hemophilia community. An invitation from The Committee of Ten Thousand (COTT) landed me on the south lawn of the US Capitol building for a rally to support the Ricky Ray Hemophilia Relief Fund, a financial compensation bill for HIV-infected hemophiliacs or their surviving loved ones like me.

I was blown away by the power of individuals forming a united front and affecting change that not only helped families of the infected but played a crucial role in blood safety for the entire nation and future generations. Yes, there were leaders (too many to mention here), like the late Corey Dubin and Dana Kuhn, who were board members of The Committee of Ten Thousand (COTT), but the community banded together to fight for justice and accountability. They succeeded.

What I would have said to him if he were old enough to understand is that despite the people making “bad decisions,” some good people––amazing people in the hemophilia community––spoke up. They dug for the truth. They answered Ryan’s question by uncovering the layers of actions and decisions that lead to so much death and suffering. They fought for government and pharmaceutical accountability. They fought for financial compensation from the makers of factor concentrates. They fought for protections in blood safety, which has made the blood supply safe for all of us.

Stepping onto those DC grounds as a widow, I knew I could not reap the benefits of those who worked tirelessly before me without doing my part. I began speaking up, writing and visiting my New Hampshire US senators and representatives. I became a cog in the wheel of a movement.

The phrase “lest we forget” applies to our community. Let us look back on the past and remember those we lost, remember our community members who have served as watchdogs over the government and remember how we achieved the protections we now face losing.

I loved that HFA has made it easy to add our voices in protest when reaching out to our politicians. I used the Playbook as my guide when I reached out to my members of Congress. If you are nervous speaking to an aide at a local district office, bring a friend who can share your concerns. Perhaps write a letter to the editor of your local newspaper. It’s easy to be cynical these days but tell your story and do your best to make the consequences of short-sighted governmental actions known.

As I am writing this, the Senate has passed the $4.5 trillion tax-cut bill that will leave many uninsured if the House passes its version. I am sick. Nauseous.

Our community has come a long way in advocating for itself, so once again, let’s stick together and act––no matter how big or small.