This year’s Blood and Beyond session will be hosted by the editors of Blood and will showcase the personal journey of Robert K. Massie Jr., MDiv, DBA, an activist, author, and politician who was born with severe hemophilia A and later contracted human immunodeficiency virus (HIV) and hepatitis C from infected blood products. ASH Clinical News spoke with Dr. Massie about his experiences as a patient living with hemophilia, and the progress and tragic mistakes that have transformed the care of patients with this disorder.
What was your experience living with hemophilia, and how has that changed over the years?
I was born in the 1950s at a time when hemophilia care was primitive. I was treated with fresh frozen plasma and cryoprecipitate, which was not enough to prevent joint bleeding. I lost the use of my legs and was in braces for many years. My childhood was very painful, and I know that there are many people around the world who only have access to these relatively primitive treatments today.
In my youth, I also understood the lack of national health insurance in the U.S. and the problem of preexisting conditions. My family moved to France when I was 12, where my health care costs were covered by the French government. I received unlimited factor VIII (FVIII) concentrate from the health system, even though I was a foreign resident, and I learned to walk again.
Unfortunately, there have been persistent problems with how plasma-derived FVIII products are manufactured and distributed. One of the worst failures was when blood products contaminated with HIV and the hepatitis C virus were distributed throughout the U.S. with devastating effects. In the fall of 1978, when I was 22, I acquired HIV from blood products; however, this was not discovered until [a few] years later, with the availability of the HIV antibody test in 1985.
I initially experienced a couple of weeks of serious illness that no one could diagnose, only to later learn that I have a rare genetic mutation that allows my immune system to remain strong in opposing, and destroying, the HIV virus. So, between 1979 and 2009, I had zero viral load and did not take any antiviral medications. The diagnosis still took a terrible toll on my family, my first marriage, and my life in general, and I knew many people in the hemophilia community and gay community who died of this devastating virus.
In contrast to my resistance to HIV, I showed no such resistance to the hepatitis C virus, which I also contracted from infected blood products in the early 1980s. By 2003, I had become extremely ill with liver disease and cirrhosis. I was forced to step down from a prominent position in the environmental field and wait at home for a liver transplant – a 7-year period of disappointment and isolation.
I pulled through with the love and support of my wife, Anne, and my family. In 2009, as part of a historic “domino liver transplant” at Emory University, I received a liver from a woman with a deficiency that affected her, but not me. As a result, the completely unthinkable took place: At age 53, my hemophilia was completely cured. I still have residual joint damage from my childhood – my ankles, knees, and elbows do not function correctly – but I am still here and doing well.
Dealing with hemophilia, HIV, hepatitis C, and a liver transplant are all extremely complicated and dangerous situations where I had to confront my own mortality. When you are that close to departing this world, you learn to love it with a special intensity. We are here only a short time and we owe it to each other to do everything we can to help each other on our complicated journeys.
How do you think medicine can avoid the types of mistakes that occurred in your experience?
We have a complex system in the U.S., which is a mixture of public research and funding combined with private or corporate development. That sometimes works well; however, because of the brokenness of our overall medical system, there are pressures on those who develop and distribute products that can cause key safety measures to be bypassed. We are witnessing this right now with the tension between political urgency to develop a COVID-19 vaccine and the need to slow down and do it correctly. Those types of tensions need to be acknowledged and discussed in detail.
After facing so much adversity, how do you maintain hope and continue to persevere?
Hemophilia and its consequences have been a source of great struggle, pain, and disappointment for me. At the same time, it has taught me some powerful lessons about love, commitment, gratitude, and resilience. I am currently recovering from yet another knee surgery and I am on crutches, but I wake up every morning amazed that I have been given the gift of being 64 years old. It all reminds me just how important it is for human beings to care for each other and, in the hemophilia community, to support people and their families as they get through a disease this complicated and worrisome.