The Living Hemophilia Memorial Committee of Ten Thousand (COTT) has reached out to the bleeding disorder community for over 24 years, participating in collaborative efforts to benefit those with hemophilia. In recent years, COTT has focused its efforts to build a living memorial to those we have lost far too early to HIV/AIDS and hepatitis C, and for the families and friends who remember them today. The Living Memorial project is not an attempt to rekindle the fires of controversy this tragedy symbolizes, but its mission is rather to celebrate the lives of the men, women, and children we miss every day-people who, through their sacrifice, have made factor VIII and factor IX safer for all of us. Clotting factor VIII and IX concentrates were developed in the late 1960s and became available for home use in the early 1970s. For people with hemophilia, like me, who were born in the 1950s when only fresh frozen plasma was available to stop bleeding, factor concentrate was a miracle drug: first, to halt a bleeding episode, and ultimately, through prophylaxis, to prevent bleeds from occurring. Immediate infusion of factor minimized joint damage due to hemorrhaging, and led to increased mobility and less pain, so that people with hemophilia could lead a more normal life. Factor concentrates allowed many of us to treat at home instead of visiting emergency rooms every time we had a bleed. And factor opened a world of new possibilities to attend college, travel, and-most of all-become more independent. Starting in the late 1970s through the mid-1980s, about half of our community became infected with-and many later succumbed to-HIV/AIDS and hepatitis C. Those who survived began a life-and-death struggle. By 1990, with the inception of COTT, a different kind of battle began: a battle for the truth, seeking to expose how factor manufacturers had allowed contaminated plasma to be used in manufacturing factor VIII and IX. The importance of this fight cannot be overstated. To this day, COTT labors to make sure an accurate history remains, always with the mindset that safety is paramount so that every generation can enjoy the benefits of factor without fear of blood-borne viruses. The original founders of the COTT board were all infected with HIV, and most were also infected with hepatitis C. Most of them knew that inevitably they would succumb to AIDS or liver failure from hepatitis C. Nevertheless, they made great efforts to ensure that factor products became cleaner for future generations. Though their lives were shortened, their legacy was lengthened, as they became pioneers in blood safety. This legacy included working with government regulatory agencies such as FDA to establish more stringent regulations that protect the blood-product consumer today. As a community, we owe a debt of gratitude to all of these people, living or deceased, for their tremendous commitment and selfless efforts on our behalf to ensure safer factor products. We must not forget the lessons of the past. COTT is working toward building the Living Memorial to honor those who died, and to give their families and friends a place to visit and reflect on our fallen heroes. The Living Memorial will have greater significance if the entire hemophilia community embraces the idea that all of us-past, present, and future-are in this struggle together, living with hemophilia and remaining vigilant that blood products are safe. Bridges of trust and respect must be built between the generations, because a fragmented community increases the chance of an inadequate response to any potential new crisis. Although an official site has yet to be confirmed at the time of this writing, we do know that the Living Memorial will be located in San Francisco. Currently, COTT has raised over $10,000 (approximately 5% of what is needed to build the memorial) and we have received a donation in kind from the architectural firm RRM Design Group in San Luis Obispo, California. Under the direction of Eddie Herrera and his team at RRM, the initial renderings of the Living Memorial have been completed at no cost. If youre interested in contributing to this valuable and significant project, please visit the COTT website at cott1.org to donate and to see the artists renderings of the planned Living Memorial.
Posted on: Sat, 14 Jun 2014 21:03:00 +0000
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