Get Involved

Share Your Story

Leave a comment on this page or on our Facebook page to share your story.

The Colburn Keenan Foundation, one of our funders, was asked by the Council of Foundations who has honored BAD BLOOD by including it as one of 12 films selected for the 2012 festival, why they chose to support the film.  You can read a Letter of Support from Colburn Keenan Executive Director, Sasha Zatyrka, that beautifully describes the impact BAD BLOOD has had since its release.

An anthology of essays and poems is being compiled in memory of those lost.  To contribute please visit the Hemophilia Community Anthology website. (The Anthology is a private initiative entirely independent of BAD BLOOD and the BAD BLOOD team.)

What You Can Do

Visit our outreach partners to find out how you can get involved with drug safety, blood safety, and public health!

Committee of Ten Thousand

Hemophilia Federation of America


National Hemophilia Foundation


To Learn More Follow These Links

* The FDA has just 10,000 employees to regulate the food we eat, the drugs we take, and the blood we need in life-threatening situations.  To learn more about strengthening the FDA and drug safety visit:

Alliance for a Stronger FDA

Consumers Union Safe Patient Project

National Research Center for Women & Families

Public Citizens Health Watch

* To learn more about donating blood & organs and other blood safety groups visit:

* To learn more about helping those living with HIV/AIDS and hepatitis C visit:

* To learn more from industry about what they do to keep blood products safe today visit:

28 Responses to “Get Involved”

  • admin Says:

    Welcome to the BAD BLOOD message board. We want to hear from you! Let’s begin the conversation.

  • Allegra Says:

    I’m very interested to hear more history about this tragic event. I will be following the website and FB page closely. I hope to catch a screening soon.

  • Zach Says:

    Really looking forward to the release – am following the fb page closely. Please continue to update

  • Ken Says:

    I was born with Hemophilia A in 1964.
    I’m a survivor.
    I have seen it all.
    I live with it all.
    I saw the 4 H’s in 1979-1980
    I became a stat in 1985.
    I saw the hate in the 80’s.
    I know a lot about what & why this happened.
    I’m very angry that our goverment looked the other way.
    If history teaches you anything.

  • Smudge Says:

    “Sick” ( a poem about the tainted blood tragedy where the canaries were the hemophiliacs)

    I am sick of people dying
    And of families always crying
    Cause of other people’s lying

    Who will own up?
    Be a grown up?
    Finally man enough?

    Who will go to jail?
    Tell the truthful tale
    Ain’t got enough bail

    When a sister stops the IV
    To try to set her brother “free”
    I know it still bothers me

    Another fun-er-al
    A service full of bull
    A swap of corpse for soul

    “Dying with Dignity”
    Seems like a joke to me
    Mine-bound eternally

    3-D kin become 2-D kin
    Never again this sufferin’
    Cut short a song about to begin

    Ultimate breach of trust
    The methane did combust
    Another one bites the dust

    Canary in the mine
    Injected full of slime
    Cut short before its time

    The story starts with precious red
    Ends with too many people dead
    Empty cage, white sheets on the bed

    The miners got away
    Canaries just betrayed
    Below the shaft they stayed

    Widows walk alone
    Pulses turned to stone
    Blood unwholesome

    “Safest in the World” they said
    Before they put the birds to bed
    Still they sew their usual thread

    We’ve got nothin’ to loose
    We already sing the blues
    Cuz ones have now replaced twos

    Lawyers wasting time
    Running from the crime
    Justice past its prime

    Always facing pain and tears
    Family members disappear
    Death is always hoverin’ near

    You still do what you do
    As if no one knew
    The real meaning of truth

    How many souls have gone?
    Prematurely withdrawn
    ‘Cause of what you did wrong!

    Empty court seats filled with ghosts
    Each of them: a lethal dose
    Watching trials that seem like jokes

    Heartless troops still march on
    As if nothing’s gone wrong
    Ever the same, sick, sad song

    A gassed-out coalmine now gone rotten
    A lifeless bird lies at the bottom
    An abandoned canary just forgotten

  • Melissa Penn Says:

    Powerful, devastating – superbly done. Marilyn Ness is extremely talented and her passion and dedication to getting this documentary made is a testament to her and all of the families involved. This is a call to action.

    Please, watch this film.

    Melissa Penn, JD, MPH
    Executive Director
    New York City Hemophilia Chapter
    and mom to a boy with severe hemophilia

  • Mike Gibson Says:

    I am a 40 year old hemophiliac and I am definitely looking forward to seeing this film on PBS. It would be wonderful to see it get (at least) nationwide distribution as well. Is there ANY brave corporation or organization that would financially back this documentary? The subject matter is definitely damaging to pharmaceutical companies.

  • Tiffany Says:

    You are telling the story of my uncle…and my family who has lived 11 years missing him. Thank you!

  • Ian Says:

    I was born in 1977 and diagnosed with Hemophilia A almost immediately because I had a seizure.
    I was diagnosed as HIV+ in 1990.
    I was told a story by my mother that during the crisis she got a call from the nurse at the local HTC to check on the vial lot numbers. As my mom read them off, the nurse would tell her if it was ok or not. Towards the end of the call she read off on last lot #, the nurse paused longer than usual-but eventually ok’ed the last number.
    I don’t remember if the pharmaceutical companies ever gave a formal apology.

  • patricia souza Says:

    my husband, dwayne w souza, was a hemophiliac. he was infected before they even had a name for the disease he was murdered by. his very own doctor, dr levine, knew my husband was being infected and never even hinted it to him. my husband was an extraordinary carpenter, among his many other talents. i watched him suffer and wither away to a mere shell of the man he once was. it was the hep c that eventually got him when he was a youngster of 44 years. his last months were holy hell for him and for me. he begged to be allowed to take his own life so many times i lost count. then, in order for him to get the measly $100,000 he was given, i, and the rest of his immediate family, had to sign off from any further legal actions. i was eventually left homeless after his death as i lost the home he re-built for me to spend my last days in. my husband, as well as thousands of other wonderful men, was murdered and no one has been held accountable for it!!! as was mentioned by someone else here, and not even an apology for it!!!

  • sarah Says:

    Thank you for making this documentary. My son, my only child, was born with hemophilia type A, and although he is marvelously healthy, it has been an uphill battle trying to explain to the world why he bruises the way he does, why he needs special treatments and what hemophilia is and in NOT.

  • Chris Wright Says:

    I had the opportunity to attend the screening of Bad Blood hosted by the New York City Hemophilia Chapter last Monday. I found it to be an incredibly powerful film. Marilyn Ness is to be commended and congratulated for this outstanding and most important documentary. As I watched it, I experienced several different emotions. It brought back painful memories from my childhood, many visits to ER’s, lying there for what seemed like eternity while the fresh frozen plasma slowly melted and dripped into my arm.

    I felt, and still feel, incredible anger for those responsible, chiefly the pharmaceuticals. I think they are evil incarnate. Two things in particular stand out – first, the incredible arrogance of the executive who talked about how the marketplace worked in bringing about the heat-treated factor into the US, and secondly, how they continued to ship the product overseas.

    I have incredible admiration and respect for the victims and for their families who were featured in the film. The incredible dignity they displayed in dealing with the horrors of AIDS and hepatitis is unbelievable, and what they were able to accomplish in cleaning up our blood supply saved countless lives.

    Lastly, I walked out of the screening room with an incredible feeling of gratitude. Somehow, through an incredible set of circumstances, I avoided being infected with HIV. How incredibly lucky I am.

    Once again, thank you so much for your dedication and hard work in producing this wonderful project.

  • Beth Says:

    This film needs to be submitted to the Academy for consideration in the Documentary category. I hope that someone recognizes this and does so. It is powerful and devastating all at the same time.

  • Laura Gray Says:

    The Gift of Experience: Conversations About Hemophilia, written by Laura Gray and Christine Chamberlain, captures the lives and perspectives of people with hemophilia who lived through this period. The book is an outgrowth of an oral history research project at The Boston Hemophilia Center and the original tapes and transcripts are available at Harvard Medical School’s Countway Library. The Gift of Experience captures the lives and perspectives of people with hemophilia and these personal stories are moving and inspiring. The caregivers speak to their personal struggles and achievements of treating patients during this time. The Gift of Experience is a healing book for people with hemophilia, their families and for providers. It is available at

  • Alicia Morado Says:

    I have 2 sons with hemophilia A. I saw the trailer for Bad Blood at the National Hemophilia Conference in 2008. I cried as I saw what previous hemophiliacs have had to go through, and rejoiced that my sons did not have to worry about their factor’s purity. We enjoy that peace because of what these men, women, & families have endured. We are one big family, a community of strong, empowered people trying to be “normal” in a world that tells us we are “disabled”. Marilyn, I am grateful that you made this movie. It gives the outside world a glimpse into what “hemo” families have struggled with as well as the stigma we continue to live with.

  • Edward N. Heisey Jr. (J.R.) Says:

    Hi, Like a lot of people posting here I have hemophilia. I have severe type A with a high inhibitor, I’m H.I.V. and hep c positive, I’ve been a long-term non-progressor for a long time. my parents waited to tell me I was infected until valentines day(ironic) of 93 and I was in my junior year of high school. I knew H.I.V./A.I.D.S. was out there but I thought I was safe, I made it because someone would have told me and with all the new heat-treating procedures etc. there’s no way I could be infected. well I was wrong. I figured after I was told I only had a few years of ‘healthy’ life left so I quit high school and planned to kill myself. luckily I’d never been sexually active or my plan to kill myself would have went beyond the planning stage. I went out west for a month and promised not to kill myself for another few years and in that time I learned I would still survive a long time and that I might not ever get sick so after being drunk and stoned for a few years straight I finally started to think again and to plan for the possibility of a future but I unfortunately found out that I was already dead socially. Maybe it’s just as well I’m permanently disabled now, both elbows and knee joints are destroyed and I live with my parents so I doubt I read like a great catch haha. Like a lot of us I’m in a lot of physical and mental pain and it would be nice to have a break from time to time but we stop fighting we die or suffer more. I’ve written my ‘gallows poetry’ also and have been published a few times it was good to be expressive like that in the beginning of ‘dealing’ with it. I remember pretty much growing up at the hospital and all the good times I had there and I think I’ve done a lot of things for a 35 year old although most of it got done before I was 25 lol. Still want to see a road race like the daytona 24 hour so I still have things I want to do even though there’s not much I can do. I do volunteer as much as possible for studies at the hospital and with the NHF etc.., it keeps my mind busy and hopefully no more kids will have joints like mine. I have vague memories of when they all the sudden started plastering bio-hazzard signs on my hospital rooms and they would all the sudden have disposable stethescopes. Remember I had no clue back then but looking back it was super obvious. I was always so good at hiding my pain that my at the time best friend was scared when I told him I had hiv after I was told because he didn’t think I was capable of crying, that I was so strong emotionally that nothing phased me which was very sad. I actually like to cry a lot now, makes me feel better to release those emotions that way I never bottle them again and let them nearly destroy me again. I have a million hobbies now to keep me busy and I take care of all the electronics and act as the house encyclopedia for the folks haha. I miss some of my old nurse coordinators from my hemophilia treatment center and a lot of the other hemophiliacs at my center that never volunteer for anything make me sick so the hemophilia community is definately not a ‘community’ at my center no matter how hard a few of us try and having state senator Vance kill our hemophilia standards of kill act because she wouldn’t let anyone vote on it when we had majority makes it glaringly obvious we still don’t have the help we need and people in charge don’t care. I thought it was bad when the government cut the psychiatrist from htc’s but that I found out later was very minor compared to what was to follow. I’m done spouting off, if we got media attention which seems to be key to everything these days maybe we can get some solidarity then help because we need a lot of help whether asked for or not.——

  • Matthew Perkins Says:

    I am 42, I was born in 1968 with severe hemophilia B. I didn’t have access to clotting factor until 1978 when I was 10 years old. I know the pain of having untreated bleeds. And I felt the hope of a normal life that Factor replacement made. It was life changing to treat my bleeds. In 1978,79 I was a camper at camp bold eagle in Michigan I learned to infuse from a camp nurse named Sally Crudder. We couldn’t afford to go to camp after that. In 1985 I was tested for HIV and was negative. When I became a camp counselor in 1987 It was not the same camp was about HIV/AIDS. I was an outsider in my own community because all the hemophiliac counselors and kids were HIV+. I had privilege of having the Ray boys in my cabin at camp. We received death threats and had to make a plan to keep the boys safe and tell anyone we didn’t recognize anything but to call the police. i was inspired by the strength these boys showed in the face of so much hate. They just wanted to be regular kids. After I that year I never went back to camp It was too painful Because all those great kids were dying and when I look at my camp picture now I can only see 1 or 2 people that are still alive now. I think this film is special because the story needs to be told. We can not risk forgetting the events that happened back then. And now we are dealing with the next phase of this genocide Hep C which I am dealing with now. I hope someday to be able to tell my story so the younger generation can understand what us older guys went through and how they need to keep asking questions.

  • Andy Evans Says:

    I am a 34 year old HIV+, Hep C+ severe haemophilia A diagnosed Brit. Over here more than 1200 people were infected with HIV and almost 5000 with Hep C. I was 5 years old when I got both. Most of the people I knew growing up are now dead, as are two thirds of our community.

    I and a few others set up a campaign group in 2006 called Tainted Blood. It took up the fight where others had left off, and since then we have forced an independent inquiry in this country and have seen the unsatisfactory resolution of a court case in which we sued the US pharmaceuticals who continued to export bad blood long after the CDC shut it down for US citizen use.

    We have a very detailed, searchable timeline if you want to look at the subject in depth, and although it is UK-focussed it does include significant points in the US history of the scandal.

    We also have a very active user forum.

    To visit us go to

    This issue is global. Only when we all unite and films like this get decent exposure (see Kelly Duda’s film ‘Factor 8: the Arkansas Prison Blood Scandal’ to see the difficulty he had getting the film aired) will we finally force the truth from those who know.

    A big well done to Marilyn and all involved in this documentary.

  • Wayne Shadwick Says:

    I was flipping through the channels and came across this documentary. I am 36 years old, and tragicly I am one of the hemophiliacs that was infected through these drug companies. I find it real hard to deal with my life sometimes, and wonder why I am still alive today, when so many others in my shoes lost their lives,including two of my cousins. I just really want to thank all who we’re involved in making this documentary, and letting the whole world know what happened to us. This film has really inspired me to be thankful for each day, and that there are people out there who care. WHO REALLY CARE! Again Thank You, Wayne

  • Joanne Says:

    I am shocked that this is what happened. I truly never knew the whole story. My father was very sick from 1975-1977. He spent those two years in a hospital before he passed on. He was eventually diagnosed with myeloma, but doctors knew nothing about how to treat him back then. He received tranfusions every other day. I am starting to question what really caused his death. This documentary is an excellent eye opener to what people will do to prevent the truth from being known. Thank you.

  • lee Says:

    in the very early 1980’s, then Gov Bill Clinton awarded a health contract to one of his donors/crony friends…one of the things allowed was collecting blood at a certain prison…at that time, it was against the accepted practices to collect blood from prisoners…yet they did it anyway…they couldn’t sell the blood in the US…but they were able to sell it to Canada and in Europe…..that blood was contaminated with Hep C and HIV……there were massive hearings about this in Canada because so many people were affected….yet the typical American knows nothing about this Bill Clinton….nothing about the fact that he was in the middle of this blood bank crisis….and we’ll go on not knowing anything about because its not in the agenda to accuse democrats of anything….just like the major media won’t report the DOJ selling arms to the Mexican cartels and having those very same guns used to gun down border agents…America, wake up….hiding our heads in the sand will not solve anything…

  • Josh Garman Says:

    I am also a victim of this era. Born in ’81, I got in when AIDS was first identified. My luck ran out and got Hep C somewhere in that decade. This movie helped me remember my childhood friends that passed away from AIDS caused illnesses. I was only told the story this movie portrays very minimally.

    After watching this movie, I understand what it was like so much more than I had previously thought. Even to the point of being a bit more conscious of those who would have known of our “involvement” with the upbringing of HIV. I think twice about telling ppl that I have hemophilia. Especially those who worked in healthcare in that era.

    As humans we learn a lot from trial and error. With such a costly error as what happened in the 80’s, blood donation and pharmaceuticals have incredibly restructured their policies and procedures. And with recombinant factor nowadays, such a disaster cannot happen again, and current and future hemophiliacs only really have insurance to worry about.

    At the Puget Sound Blood Center, in Seattle WA, the blood donation registration form asks specifically if you have been in a relationship with a hemophiliac. Answering yes to this is automatic disqualification from donating. I can’t really say this is not just. However I believe the date of birth of the hemophiliac should be a factor.

    Personally, I sarcastically (a common characteristic amongst hemophiliacs I have come across) thank the druggies, prostitutes, and gays of the 80’s, for donating their deadly blood to us. However it is good to know the fate of anybody that did donate their viral blood.

    And an honest sincere thanks to Marilyn Ness for helping in bringing the light of the situation for the world to see for generations to come.

  • Cristi Says:

    I watched this documentary last night and was heart broken for every family involved. I cannot believe how greedy and how careless with a human life these corporations were.

    I was diagnosed with Hemochromatosis last year, a genetic iron disorder which consists of me having bi-weekly bleeds to remove the high amounts of iron from my body.

    When I start going for my second round of bleeds I am going to ask for my blood to be donated to the Canadian Hemophilia blood bank.

  • Susan Says:

    I watched this film yesterday and I just wanted to say to the film maker that I truly appreciate her approach and concern in getting the facts straight and out there. My husband is one of the still living victims; his brother was not so lucky and died of AIDS. As hard as it is to revisit this crime, especilly as we live with it on an ongoing basis, I am glad that the story is out there for more to see.

    That’s it for now. Thank you, thank you, thank you.

  • Helen Steely Says:

    In 1987 I watched the National Bar Association meeting broadcast on C-Span when young lawyers were begging the NBA to push the government to make hospitals require double gloves and protection for nurses, plebotomists and medical technicians because at least three people had gotten AIDS from needle sticks. The excuse of the government oversight regulators and the hospital administrations was that the individuals were really infected from unprotected sex. Why are so many people willing to let such criminal behavior be forgiven? The past was aided and abetted by Elizabeth Dole but her role in keeping the Red Cross blood banks unclean was never mentioned in the film. Too many people never paid any price and continue to get pensions from the US government. Private firms are still running our health system to the detriment of all. I only hope that those pushing for universal healthcare will institute criminal sanctions in law in anticipation of the future greed we know will happen.

  • Ben Pincus Says:

    I’m going to be 60 next week. I’m one of the lucky ones. I only have Hep-C. My cousin died of liver failure in May. His case was more virulent than mine and he needed a liver transplant. After about 18 months, it rejected. He was 61. I vividly remember sitting in a meeting at Children’s Hospital in Detroit of maybe 200 hemophiliacs in the mid-80s. The doctor stood up and said, “If you have been taking Factor-8 concentrate, don’t bother being tested. Make a will.” They had not even isolated the virus at that time, nor did it have a name. Nearly all those people are gone now. As a mild hemophiliac I had only taken cryoprecipitate on two occasions. At that time it took 3 weeks to get test results. My wife and I lived in terror that whole time until the test came back negative. They told me I did have antibodies for hepatitis and that they could not identify the strain—and not to worry about it. It was nearly 10 years before I knew I had Hepatitis-C. I can’t forget that the German parent company of Bayer, the parent company of one of the 4 who produced the deadly factor and later knowingly shipped it overseas were also the same people who produced the gas for the gas chambers of the Holocaust 1939-45. It was not out of character for them.

  • Steve Munger Says:

    I am a 52 year old Hemophiliac who was infected with HIV and Hep C in 1986.during the last 25 years I have experienced a low platelet count resulting in a brain aneurysm and a splenectomy.A few years later I contracted lymphoma as well as a bleeding ulcer. All this with the usual problems of growing up with hemophilia. I have been recently diagnosed with a tumor on my liver.
    My question is why do those of us who have survived this holocaust must continue to pay those who wronged us in the first place? It’s ruining my financial life with copays and doctor visits. These are very sad times!

  • Randi Dubin King Says:

    Dear Marilyn,
    My name is Randi Dubin King and I have the honor and privilege to be the older sister of Corey Dubin, COTT and advocate, My father, Alfred Dubin, whose leadership and advocacy enabled children with Hemopilia to have access to the best of care at Orthopaedic Hospital in Los Angeles, instilled the unshakeable determination and strength of character that I see everyday in my brothers heart and soul.
    I spent most of my childhood as the silent observer at the Hospital and genetic testing was in its infancy period. I adopted two children to avoid the remote possibility that my daughter could be a carrier without knowing the ramifications of raising a child with a blood disorder. One of my children has special needs and I credit my role models for my ability to create the best environment and support needed. I am so impressed by this documentary and your commitment to tell this powerful truth, that has been silenced outside of the Hemophilia Community. I have lived and breathed the horror of the 80’s and have felt the collateral damage that rivets families. Corporate profit taking precedence over public safety is a reality. Blood safety affects all of us and this Community has proved that a few determined, tenacious and dedicated people can make a difference. THANK YOU THANK YOU for your dedication to making this a reality.

Leave a Reply