Fall 2007 | The Need to Remain Involved / Dan Holibaugh

It is amazing, as I wonder upon fragility of life, that my boys ever made it through the 70’s and 80’s with severe hemophilia. Thirty-five years ago, conditions were much different and much more precarious than today. Back then, it was like staggering through a minefield blindfolded. Medically, things have really changed for the better. The advent of the newer generation of cleaner products, which inspired prophylactic treatment, increases not only life expectancy, but also the quality of life.

In the days before such treatment, these kids and their parents spent many hours in emergency rooms receiving treatment with the ‘dirty stuff,’ usually after the crippling effects of the bleeding had already begun to set in. If you were lucky enough to be at a hospital that had a Hemophilia Treatment Center, there were still problems after hours because there was no in-house communication with the Treatment Center. Emergency room doctors usually knew very little about bleeding disorders and always wanted to do x-rays and tests before initiating any treatment at all. It actually became a struggle knowing more about hemophilia than the emergency room physicians because they were definitely not trained to take orders from patients.

Once in a small hospital, in the wee hours of the morning, we had a very traumatic experience. The resident there almost infused my son with a product called topical thrombin. This is a product that, if infused, would cause an instant thrombosis most probably affecting the heart or lungs. Had I not already been aware of this product and its correct usage, the unimaginable could have occurred.

The down time from bleeding episodes made it quite difficult for my sons to be recognized in grammar school as regular attendees. High school was even more difficult because of the need to walk between classes. In college, the walks across campus, which are normally a pleasurable experience, became a frustrating and painful test of endurance. I remember the intense feeling of pride and fulfillment when my sons, Eric and Joe, graduated from college. Their achievements meant more to me than ordinary academics and diplomas. They had persevered through enormous obstacles of would-be limitations to arrive at their objectives.

Unfortunately, my boys never had the option of some of our newest medical advancements, which mainly revolve around Hemophilia Treatment Centers. Joint replacements are now becoming successfully commonplace within this community. Skilled hematologists and surgeons are teaming together, guiding patients through joint replacements, which were barely imaginable even two decades ago. This equates to greater mobility that dramatically improves the abilities of the older generation. As new research is conducted and new treatments are made available, we are presented with yet another reason to remain active and involved with our community.

Because of the HIV holocaust around the world in the hemophilia community, and the unthinkable causes that became known shortly thereafter, we as consumers have become much more aware of the importance of watching the industry we rely on very closely. Many consumers now watchdog from within the industry, and this is a good thing.

Today the issue has become continued access to these improved products and services. The blood supply is now being monitored more closely and we have recombinant products that are virtually risk free of HCV and HIV. These improvements came about on the backs of previous generations that suffered and fought for these beneficial advancements.

It is sadly ironic that many are now losing access to these therapies because of fiscal issues. Yes, health care is expensive, which has created the current issue we now face as a community. In practically all states, the government, and in every state, the insurance industry has initiated policies aimed at eroding access to products and services in efforts to firm up their bottom lines. The truth is there is an abundance of money to go around. It is up to us however, to see that it is managed properly and goes where it is needed.

It is very important that we remain vigilant and politically active within the hemophilia community in order to protect the advancements we have made thus far. Failure to become involved in the process of our own health issues is leaving our future to politicians and businessmen to decide for us. The past has proven, the present landscape of our community dictates, and the future implores that we all become responsible and knowledgeable advocates on behalf of all of those within our community.