Press Room

The Money and Blood of Others

Keynote speech delivered at the National Hemophilia Foundation's 55th Annual Conference.

Good morning. My name is Benjamin Shuldiner and I have hemophilia. That's right. I have hemophilia. It feels good to say it. I haven't said that in a long time. I'll walk down a hallway and someone will say "Ben, are you ok -- you're limping." Yeah I have a bad ankle. Or I'm fine, I always limp. Or I was playing basketball and I twisted my ankle. My ankle sometimes it just hurts. I use these answers because I don't have the time to explain that I have hemophilia. But I am among brothers here. You know what it's like to wake up and not be able to walk. You know what it's like to limp all day at work or school and just not have the time to do your medicine. You know what it's like when your knee or ankle or hip or elbow is acting up. I can tell you I have hemophilia and you know what I mean. You are my brothers.

And we have survived. I know many of my brothers have passed away, people with hemophilia have been taken from us. I know some of us are in pain. I know some of us hurt because of hemophilia. But the storm has passed. We shall be like the phoenix. Out of the ashes of yesterday rises the hope of tomorrow. We should never forget what happened to our community, but we need to move forward.

When I was asked to speak here today, there was not a moment of hesitation, nor of resistance. I stand here in front of you as a humble man, honored and flattered to be asked to speak. The chance to thank, support, and even guide a community that supported me to live is an honor beyond words. With my time here this morning I will say what I can, to help, inspire, and re-enforce the ideas and support I received that have allowed me to thrive in society. Here I stand; I cannot do otherwise.

We are here today to celebrate, we are here today to rejoice, we are here today to thank those that have worked so hard for us to be here. It would be wrong of me to stand here in front of the hemophilia community and not thank you. Thank you to my doctors, thank you to the scientists, thank you to the parents. We are here and we will survive. I have not let hemophilia stop me. I know I was asked to speak to you because of the work that I have done in spite of having hemophilia. But, in fact it might be because of hemophilia that I care so much about helping others and why I have been able to do what I have in my life.

So many people have helped me. So many people have given me their money and blood that I can't but think that I owe society a huge debt.

Hemophilia has not stopped me from living my life. Hemophilia does not make me a victim. Hemophilia is not a reason to shrink from the world. It is a reason to grab it with both hands and help. In high school I was the chairman of the largest youth community service program in Los Angles. At Harvard, I helped create a national student movement to support workers and to close down sweatshops around the world. And now, I am the principal of a high school devoted to public service, that I helped to create. The High School for Public Service is a school in inner-city Brooklyn populated with poor, minority students. And each and every one of my students does 50 hours of community service a year. In addition, they tutor young students. They run food drives and coat drives. These students from Crown Heights give back to their community even though the rest of the world would think they should be the ones with their hands out.

If it were not for my doctors at the New York Hospital Hemophilia Clinic, if it were not for those who donate blood, if it were not for the money that goes into scientific research and medical care, I might not have been able to live out my life. This inspires me to give back to society.

I believe it is my responsibility to give back to the world. Hemophilia played a big part in developing that philosophy. I could never think of myself as a victim of a disease. I am empowered by the contributions of others. Think of all the work that has been put into keeping me alive. It must cost over a hundred and fifty thousand dollars a year to my insurance company to keep me alive. Where does the money come from? It comes from people, people that I do not know, people that will never meet me, who give money through their taxes and insurance premiums to help me live. I was thinking about it when I was writing this speech. I have lived for 26 years. I average one infusion of 3000 units a week. I probably average a little more but it makes the math easier. 3000 times 50 weeks. 3000 times 50 is 150000 times 25 = 3,750,000 units. You figure a dollar a unit. So we are talking 3.75 million of someone else's money. Just think 3.75 million dollars to keep me alive. I better be worth it. Just think, the city could have built a school with that money.

Then I think of all the personal efforts of others that have gone into keeping me alive -- scientists, nurses, and regular people. Before there was Recombinant medicine we all had to use some kind of blood, be it whole blood, fresh frozen plasma, cryoprecipitate, we had to rely on the beneficence of others. People who we did not know gave their blood to us. When I was a child I remember going to the New York Blood Bank to pick up my medicine. I remember that my father always gave blood. It is only now that I put the two together. My father donates blood, I receive blood. Someone had to do it to keep me alive.

However, I would be remiss if I did not thank one person in particular. One person who embodies the idea of taking control of hemophilia, Eric Delson. Eric Delson was a man who touched my life and that of my family, as I am sure he touched others in this room. Yet, I could not pick him out of a line up even if he were alive today and standing next to me. But his compassion and his patience and understanding probably did more for my life than almost anyone else. And what did this man do? He taught my family how to self-infuse. He gave my family that ability to take control over hemophilia. He was one of the first people who showed my family that we would beat hemophilia.

It is amazing to think how far we have come in my lifetime. When I was born I took fresh frozen plasma. What seems now as huge bottles of medicine being administered by a nurse. Then cryoprecipitate, then medicine that had some factors, then a Mono Nine and now a Recombinant factor. This amazing scientific advancement should yet again reinforce to everyone in this room just how much we have moved ahead. There should be no pity and there should be no remorse.

Society has given me their money, their expertise and their blood and has it been worth it? When I take my medicine, I am in effect signing a promissory note that I will give something back in return. I must do something that shows it was worth it for society to provide me with so much money and blood. What can I do to provide a service for society? What good can I create? I must do so through my deeds and actions.

So I say to the world you might think that the hemophilia community is struggling but we are strong. I know your knees hurt, I know some of your bodies are ravaged with one, two and three diseases. But don't let it get to you. Think about all the help people have given us over the years. Think about the medical breakthroughs: Recombinant, peg interferon, AZT. Think about today as a new beginning. I know it is hard sometimes to listen to the doctors, your friends, or even your family. But please. We have come too far to give up now. We should work together, support each other and try to give back in some way to society. We should be an example. We can be an example to people all over the world. The hemophilia community is proof that the human spirit is strong. Even a community devastated by pain can overcome and persevere and give back.

I don't like talking about myself. I would rather talk with you in the audience. But I have been asked to be here because of the things I have done. The way I see having hemophilia is the help others have given me I should give to others.

I helped to create a high school last year. I am now the principal of that school. My school -- the High School for Public Service -- is in Crown Heights, a poor neighborhood in Brooklyn. I created it to make a difference. We've only been open for two months. We're doing pretty well. Our attendance is high. The kids are learning. I have found a way to give back. People have given me so much, and I have found a way to give back.

I ask for no pity and I plead for no immunity. I say to all of those with hemophilia never use it as an excuse. Instead of considering ourselves victims, we should think of ourselves as leaders. We should be an example.

We should be an example for another reason. As a community, we have weathered an incredible storm. We have looked at death in the face. We have looked at extinction. But we are still here. One of my favorite poets, Aeschylus wrote, "in our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, against our will, comes wisdom through the awful grace of God." Let us use the wisdom that has come from the pain. What we need now is not pity. What we need now is not remorse. What we need now is not fractionalization. What we need is love and wisdom and a desire to help others.

We have survived, and we will thrive. I have found a way to live with Hemophilia. All of us in this room have found a way to live with hemophilia. We are here today. And we have work to do.

However, I never would have been able to do that if I hadn't kept myself healthy. This applies to all of us: we cannot help the world if we don't take care of yourselves. So here I ask of all those with a bleeding disorder. I do not want to lose more brothers. Take care of yourselves. Do not use hemophilia as an excuse to not be healthy. I know sometimes you just do not want to take your medicine. I know sometimes you just hurt too much to go to the gym. I know that a whopper with cheese with fries and a shake tastes good. But I have a promise to keep. That the four million dollars spent on me is worth it. Go to the gym. Eat well. Take vitamins. This is no different than what everyone should do. But we have a promise to keep. The blood and money of others is well spent on us. We must be healthy in order to help others. Do not use hemophilia as an excuse, it is a reason to take care of yourself. Start slowly. But start. We must be able to live, we must be able to give back. We cannot do that if we are not healthy.

Now I ask the mothers of those with bleeding disorders. Love us but let us be. Let us be kids first and have hemophilia second. If we are to be exemplars we must be able to try. If we are to be models for the community, we must be able to live. Parents, you need to let your children experience more. Do not be afraid of hemophilia. For us to be exemplary means being treated like everyone else and not be closed, but to be happy to be part of the world. Having hemophilia does not mean anyone should be scared of what the world has to offer. A couple of bruises is a fine price to pay for becoming part of society. It would be wrong for anyone to withhold experiences. Bruises will fade, but the experiences will last. I certainly do not remember all the times I have had to infuse, but I remember the basketball leagues I have played in. The baseball leagues I have played in. And I certainly remember rowing down the Charles River in college. I do remember the bad thigh bleed I had freshman year, but it resolved and I was able to finish the season and received an invitation for the varsity club. So I ask that families see that their obligation is to nurture and support, protect, but don't protect your sons from themselves.

I know it must be difficult to let your sons be kids -- it must have been hard for my parents too. I know that when I was born in 1977 my parents did not know if I was going to make it to my first birthday. They were scared and I understand. Finding out their first child has hemophilia must be a devastating blow to a young couple starting to make their family. But once I started to grow they decided to treat me as a child. Sure they didn't let me play tackle football. But I did play, baseball, basketball, crew, ultimate Frisbee, swimming, and a myriad of other sports and recreational activities. When people on the subway looked at my mother because her son had ace bandages on his arms, I know she took pride in the fact that she allowed me to experience life. If people look at you with disapproving glances because your son has a black and blue, take pride. If only they knew. If only they knew why he has that bruise. It is because you love him enough to let him experience life. You let him be a kid, scraped knees and all.

When it gets hard to let your son be a kid, I ask parents of young people with hemophilia, just think about being alive with hemophilia today compared to even twenty years ago. We all should all be ecstatic at the progress that has been made. But especially the parents of children born now. There is no more fresh frozen plasma. There is no more cryoprecipitate with seven different proteins. You put a child on prophylactic infusion and he will hopefully be all right.

There has been so much change in treatment that we as a community should change. There's very little reason to be closed or overprotective of children. You can look at the people with hemophilia. Anyone over thirty seems like they have really bad knees or a bad hip and certainly arthritis. If they are between 15 and 30 they limp, they have a couple of target joints. But I tell you I am jealous of the child with hemophilia who was born after 1990. They seem fine. It is amazing. Please parents let them be fine. Let them be kids first and have hemophilia second.

I am sure it was not easy for my mother to let me be a kid; to let me become a person. It must have been hard to see me hurt in any way. But the normality I was allowed to experience was more important than any bruise or cut or scrape. By being one of the boys, I never felt like I had to exclude myself. This is what let me grow up to be who I am today. This is what lets me be part of society now. This is what lets me contribute to society as a full member.

Thanks to my parents, and thanks to hemophilia, I am who I am today. My parents' refusal to treat me as a victim gave me the ability to start my own school. They taught me that hemophilia was not an obstacle. I was not a victim. I was a regular member of society who can do all the things that he set out to do. Thanks to all those who have helped me overcome hemophilia, I have learned my responsibility to give back. I have been given so much. I have been empowered. Now it is my turn to give back.

Let us learn as much as we can here in Salt Lake City to make ourselves healthy. And then let us go home from Salt Lake and dedicate our lives to what the Greeks wrote so many years ago, "To tame the savageness of man and make gentle the life of this world." Let us say a prayer for our brothers who are no longer with us, but to let us also say a prayer for our world and our community.