Hemophilia Then and Now: A Look at How Far We’ve Come
May 30, 2018 | Express Scripts
Andy B. is a customer relations specialist working at Accredo, Express Scripts’ specialty pharmacy.
In my role with Accredo, I help our customers with bleeding disorders like hemophilia overcome obstacles to care and connect them with financial and community resources. For those who may be unfamiliar, hemophilia is a genetic condition that keeps blood from clotting properly. People with bleeding disorders can have significant internal bleeding from a simple injury — like bumping a knee or an elbow. A large part of my job involves not only providing information to patients but also offering them support and understanding. You see, I have a special connection to these patients because I also have hemophilia.
Hemophilia runs in my family, so when my mother was expecting my twin brother and me, she told her doctor, and we were tested as newborns. Our hemophilia was classified between moderate and mild, and we were encouraged to play and have fun. We both played soccer and were typical, active boys. After all, studies showed that hemophilia patients who were more active strengthened the muscles around their joints, which could help decrease the effects of a bleed when one occurs.
Until the late 1960s, the life expectancy of people with hemophilia was much shorter than average because there wasn’t an effective treatment. That changed when clotting factor, a new medication that could control clotting, started being produced. Finally, bleeding could be controlled! This meant that people with hemophilia — like my brother, Steven, and me — had the prospect of living longer lives.
To make a batch of this new clotting factor, manufacturers used the plasma of up to 60,000 donors. While it was an efficient way to make a lot of medicine, the blood and plasma supply wasn’t as safe as it is now, which caused around 10,000 people with hemophilia to contract HIV.
During this time, education about AIDS wasn’t as advanced as it is today, causing a negative stigma to be attached to hemophilia. You may remember a boy named Ryan White, who had hemophilia and was diagnosed with AIDS in 1984 following treatment with clotting factor. Since little was known about AIDS at the time, Ryan gained national attention as he fought a lengthy court case to regain admittance to his school, where officials, teachers, parents, and students believed he could transmit HIV by casual contact. Sadly, Ryan died just one month before his high school graduation. This event had a personal significance for me as my brother passed away from the side effects of HIV when we were both 19 years old.
Over the years as medicine and research advanced, so did treatments for hemophilia. Newer advancements led to the creation of new treatments that required fewer weekly infusions. Throughout my life and during my 26 years working with hemophilia patients at Accredo, I’ve been able to experience firsthand just how far we’ve come with treatment, and the knowledge and acceptance of hemophilia and HIV.
Successful management of bleeding disorders includes the independent administration of the intravenous clotting factor. This can be a huge obstacle for a parent or a young person to overcome! Luckily, bleeding disorder summer camps operate in nearly every state, and help promote this crucial skill. I support the community by volunteering at several of the summer camps, where the amazing medical and support staff encourage young people to explore what it means to be medically and physically independent.
As the industry recognized World Hemophilia Day on April 17, I’m proud of the progress we’ve made. And, I know my brother would be, too.
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