Although I received my healthcare early in life from the military and didn’t meet another person with hemophilia until I was 16 years old, my story is similar to many of my contemporaries with bleeding disorders. In the early 1970s, I started receiving factor concentrate therapy to treat my hemophilia bleeding episodes. This was a wonderful improvement over previous therapy, which involved a seven- to 10-day hospitalization to receive large amounts of fresh frozen plasma. I learned to self-infuse during those early years, but was not yet on home infusion treatment. Because of a severe respiratory reaction to one dose of factor in December 1972, my doctors felt it was best that I go to the emergency room to treat as a safety precaution. Still, the treatment was such a big improvement over what I formerly had to do that even this precaution was acceptable. It allowed me to attend college and work at many types of jobs. Life seemed wonderful.
Then in 1978, I contracted hepatitis B from my factor replacement product. To this day, I remember one of the sergeants who worked at the hematology clinic at Wilford Hall Medical Center at the Lackland Air Force Base in Texas telling me that there was a lot of what he called “junk” in the factor products. I would later come to understand that this “junk” was known and unknown bloodborne pathogens and additional unnecessary clotting factors. At the time, I did not think too much about it. I was busy living my life, going to school, dating the woman I would marry and working—all because of this wonderful product. Then in 1979, I got married and went to work in Houston, where my care was provided by the Gulf States Hemophilia and Thrombophilia Center.
At the time, the next great step forward was home infusion therapy, treatment on demand. No waiting for doctors, lab results or X-rays. Life was wonderful. Health insurance through my employer covered my factor, but only after a one-year waiting period.
After that, I was really living a fairly normal life. I went back to school at night to get my bachelor’s degree. I worked during the day, attended classes four nights a week and had fun on the weekends with friends. What I did not know was that there was a train wreck called HIV/AIDS heading right for my so-called “normal life.” This woke me up to the fact that as long as people with hemophilia have to take treatments with blood products, there will always be risks associated with the treatments. I would never again be complacent about my own factor replacement therapies or anyone else’s.
Complacency is defined as feeling secure or satisfied with oneself or one’s lot. I worry that the bleeding disorders community is now falling into the same trap that caused 95% of all people with severe hemophilia who were treating with clotting factor in the late 1970s to be infected by HIV in the 1980s. Back then, we were satisfied with the products we were getting, even though they were known to infect people with the hepatitis B virus. We, as a community, were too satisfied with our world. These days, the viral inactivation processes are working; the majority of the bleeding disorders community in the US is using recombinant products that are protected from contamination. But there are other concerns that should remind us to be vigilant, not complacent.
My main concern is that so few in the community wonder how hemophilia treatment centers (HTCs) are funded or even know that the federal government has not increased HTC funding in more than a decade. With rising inflation and no increase in funding, you have a net negative. All you have to do is look at how your last pay raise was affected by the current price of gas and groceries to understand the problem. Less funding at the federal level means fewer services offered to the community.
In the mid-1990s, the Centers for Disease Control and Prevention (CDC) conducted a study comparing care received by patients in six states. The results showed that patients seen at HTCs had a decrease in morbidity and mortality—they lived longer, healthier lives. Some of us may be billed for the HTC visit and the doctors’ fees, but these charges do not come close to covering all of the costs associated with the HTC. On the other hand, depending on your health plan, most people do not get billed for the nursing, physical therapy, dental and genetic consulting services that we can access through most HTCs. These teams of dedicated specialists are our experts in treating the various aspects of our bleeding disorders.
Having been treated by some doctors over the years who did not understand all the complications of hemophilia, I know how scary it can be to face a procedure by a healthcare provider who does not have the knowledge or expertise of our HTC teams. When I had my gallbladder removed, the doctor not only gave me factor to 100% blood level, but gave me additional fresh frozen plasma. Today, I know just how lucky I was that I did not have a problem with too much clotting after the surgery. Another time, an orthopedic doctor wanted to aspirate the joint for a bleeding episode in my left elbow. My parents and I declined this misinformed treatment. These are examples of the types of healthcare provided by doctors who were not experts in hemophilia care.
Besides providing expert care, HTCs also provide surveillance for emerging problems in the community through their cooperation with the CDC and the Universal Data Collection project. These data help identify problems, such as obesity or the difference between prophylaxis and on-demand factor replacement therapies for joint diseases. The collection and storage of blood samples to be used for surveillance of emerging bloodborne pathogens also is accomplished by this relationship between the HTCs and the CDC. None of these activities could be done without the national network of HTCs.
Lack of funding for HTCs threatens our entire community. Much the same way we were not paying attention in the 1970s only to be ravaged by HIV in the 1980s, we could be taken by surprise by our own complacency with the current state of HTC funding. We are now in jeopardy of losing something we should all value. How many will suffer joint disease or die if we allow our centers to collapse because we were too content with the status quo and paid no attention to the warning signs? This is not “someone else’s” problem. I believe all of us should be concerned about our HTCs and should be looking for solutions to the funding crisis. Many centers have tried to solve one aspect of the problem by establishing pharmacy programs to make up the difference. However, since insurance companies are ratcheting up the cost of factor, this might not be the answer, either.
This community has the ability to overcome great odds in achieving goals that we set for ourselves. The Ricky Ray Hemophilia Relief Fund Act of 1998, which provides compensation to families and individuals who were affected by contaminated blood products, is proof enough. Although we were given a less than 10% chance of getting this legislation passed and funded, we were successful. We then raised $5 million for NHF’s “It’s Time for a Cure” campaign in three and a half years, despite predictions that we could not do it in five years. Money from this campaign is still being used to fund important research today.
I believe that if we put our collective minds together, we can solve the HTC funding issues so that all centers not only maintain services, but grow to serve the large undiagnosed and underdiagnosed populations within our community. This includes populations such as von Willebrand disease, women with bleeding disorders and thrombophilia. If we are going to expand our mission to find and support these individuals, we need to make sure that they have access to care and that it is the same high quality we all expect today.
I trust that all segments of the community will come together to solve the HTC funding issue before it becomes the next chapter of woes in our history. Help the community by writing to your legislator or attending NHF’s Washington Days. We cannot afford to be too busy or complacent.