Bad Blood

Memorial Day of a Different Sort

Laurie Kelley May 30, 2011

Today is Memorial Day in the US, where we remember and honor those brave soldiers who fought in wars to protect our country and liberate others. It would be hard to find a family who does not have someone in it who gave their life for their country. I have at least one in my family: my uncle Jim Morrow, my father’s brother, who died in 1967 in Viet Nam. We find ways to remember our brave heroes: Jim has a place of honor on the Vietnam Wall in Washington DC, and on the virtual Wall, on line.

This week we will also remember heroes from a different war: HIV.

On June 2, PBS will at last broadcast Bad Blood: A Cautionary Tale, by Marilyn Ness. This emotional, deeply moving documentary portrays life with hemophilia before the “war,” when there was no blood clotting factor. This in itself can bring you to tears, watching children hobble about on crutches, suffering with joint bleeds, in hospital beds when they should be out in the sunshine playing. Then, the miracle of factor, and how it transformed lives from being crippled to being freed. Factor liberated all the children from this sad fate.

Who could have ever, in their wildest dreams, known that in the late 1970s a virus, unlike anything the world had ever seen, lurked in the nation’s blood supply? This is the stuff of science fiction, not reality. But it became our reality. Thousands were infected, and thousands died horrible deaths.

I know personally almost many of the heroes in the film: Dana Kuhn, Bob Massie, and Glenn Pierce. Bob says, this “is the story of a failed medical system, of companies and politicians putting profits before people, and of patients being kept in the dark about their very lives… It is the story of a critical piece of American history, when thousands of patients, doctors, and families came together to repair a broken system.”

Here is also Bob’s statement, which best expresses the heroism evident in those infected: “When I learned, more than twenty-five years ago, that my lifesaving injections had exposed me to a dangerous virus, I made the resolution to continue living each day, always staying true to myself and those I loved, and never giving up hope. I was lucky, and overcame them both with the help of world-class medical care and the love and support of my friends and family.” Bob is now running for US Senate.

But thousands of others were not so lucky. Like fallen soldiers in a devastating, insidious war, they are now remembered and honored in Bad Blood, which memorializes their struggle, their sacrifice and their legacy. Bad Blood is their local memorial park, their Viet Nam wall, their Iwo Jima monument. Clearly, their deaths, and the determined action of the survivors to seek justice and a change in the blood collection system and factor production, have made hemophilia treatments– and our entire blood banking syste–safer.

I cannot stress strongly enough to watch the movie. If you want to know the psyche of the US hemophilia community, understand its anguish and advocacy and determination, you must see this movie. If you want to see true American heroes, watch this movie. It’s not just a documentary, but a memorial to fallen soldiers.

Bad Blood is showing on WGBH at 10AM, 4PM, 6PM, and 11PM on June 2nd. Please forward and share this with your friends, family, community members, and anyone in the medical field.

Great Book I Just Read

Johnny Got His Gun
by Dalton Trumbo

You may have, like me, read this book in high school. It’s worth another read. Written in 1959, the novel was actually written in 1938 and published just after the start of World War II. This is the story of Joe Bonham, a youjng American WWI soldier who is horrifically disfigured and disabled. Told only from Joe’s thoughts and memories, Joe slowly becomes conscious and then must decipher what is happening to him. He realizes slowly he has lost all his limbs and his face; how does he cope with this horrific realization? All he has left is his skin and ears as sensory organs; he struggles to control his panicky mind.

Memories of home and family flood him; he reflects on why he went to war. Trumbo has a message, one that not all Americans in these times may want to hear. But we grow as humans when we read what we don’t always agree with; the horror of war, its terrible human cost. It can be viewed as a book about war and its effects (think of the thousands of scarred soldiers returning now; for second year in a row, the US military has lost more troops to suicide than to combat in Iraq and Afghan) or simply about the strength of the human spirit and surviving unimaginable loss in any field, at any time. This book is worth a read, though there are problems with run on sentences, grammar, etc. Two stars.

Good Day for Bad Blood

Laurie Kelley December 5, 2010

December 1 happens to be World AIDS Awareness Day and we remembered the fallen heroes in our community with a very special showing of the new movie “Bad Blood” by producer/director Marilyn Ness. I was glad the movie was being brought to Boston, as it gave our community the chance to get together and relive some sad moments, but also to honor those who did so much for us. The US has Veteran’s Day to honor its soldiers who have kept us free people; those who died of hemophilia and HIV also gave their lives so that we remain free.

The event was well publicized and well attended, despite the drizzly weather. I saw many friends, and many of the young men with hemophilia who attended I have known since they were born! The first person I spied was John Rider, who works with COTT, the organization that hosted the event. The show took place at the West Newton Cinema. Who was the most dedicated attendee? Dr. Marion Koerper of San Francisco, who I had just bumped into in New Orleans two weeks ago, and who told me that she was going to be in West Newton on December 1 visiting her sister! She agreed to come and attend the movie, and indeed, she had just landed at Logan Airport and came straight to the show! Such dedication!

I’ve seen the entire movie, of course, as I just wrote about it in PEN. But it was powerful to see it in a theater with all my colleagues, friends and peers. Powerful movie. We were very lucky to have three stars of the movie with us: Dr. Glenn Pierce, who now is VP at Biogen Idec, in Cambridge, and who brought about 30 Biogen people to the showing; Mary Lou Murphy, whose sons died from HIV; and Terry MacNeil, who also lost her son to HIV.

I would strongly urge everyone to see the movie when it shows locally at a chapter event. It’s not to be missed. It is extremely well done, powerful and captures a bleak time in our history and exposes the many cracks in the blood banking industry and in the watchdog groups and corporations that failed to act to stem the contamination of blood products. When you do see the movie, please also read the November issue of PEN, which will help fill in any gaps in the movie’s perspective of history.

Laurie, Jessica Swann of Biogen Idec, Mary Lou Murphy

And please consider buying a copy. Go to www.necessaryfilms.com. You will feel sad, maybe scared, but certainly grateful… that your child escaped this tragedy, and that he or she is enjoying excellent products today because of the sacrifices so many made.

Thanks to COTT for hosting the show; proceeds will go towards a proposed national monument to the community members who died; Japan has one, England has one. Why not us? And why is it proposed in Massachusetts? That’s where Tom Fahey and Jonathan Wadleigh, two founders of COTT, lived.

Great Book I Just Read
The Other 90% by Robert Cooper

This is one of my favorite motivational books. There are no exercises or quick fix-its. Just good advice on how to develop your potential, determine what you want to pursue in life, and how to keep balance. The other 90% is the part of our brain we don’t use. The book’s premise is that we use so little of our brain potential that we could be living better lives by tapping deeper into ourselves, and by developing the courage to explore and use it. You can read this book in a day, and come away excited, energized, hopeful and maybe even with a plan. I agree with this book’s message so much, and it’s why I do crazy things like skydive; you don’t know who you are until you know what you can do. Keep pushing the envelope–and this book will help you do that! Three stars.

Preserving Our Past

Laurie Kelley November 29, 2010

I recently hauled out about 35 8mm video tapes of my family going back to when my son was born. The early ones are grainy, not great quality–they are after all about 23 years old and technology has surely changed–but at least we have some memories. The more recent ones are bright, exciting, lively, captivating. Maybe it has to do with the tape quality, but maybe it has to do with all the stress we were under from that time, as we spent a lot of time worrying, in the hospital, and under a lot of pressure.

Now I am converting them all to my iMovie, backed up on external hard drives, digitized and immortalized for all time. I can edit them, look at them at my leisure, add titles, special effects, voice overs… even improve their quality. You definitely feel a sense of closure when you have secured your family’s history.

This is also what Barry Haarde is doing–preserving our hemophilia history by creating the “Hemophilia Archive,” collecting in a website everything he can find related to hemophilia. It’s a daunting task, but he is compiling what will be the best and most definitive collection of hemophilia videos, newspaper articles and books.

Barry’s work was just profiled in my newsletter PEN, and he starts our article by asking who is Ryan White? Excellent question. We have a new generation, raised on excellent products, prophylaxis and tons of educational materials and social support, that hopefully will never endure what our children endured (extreme ignorance? Remember there wasn’t internet, Google or even a book on hemophilia in 1987!) or what the previous generation endured: HIV, hepatitis C, the deaths of thousands of fine young men.

Barry is a man on a mission. I urge everyone to sign up to receive his installments of the hemophilia archives, and to contribute something. Recently, I sent him the first two copies of PEN, started in 1991. Very amusing; a total circulation of 50 and Xeroxed. I also sent him the cover to the People magazine produced the week my son with hemophilia was born. Right on the cover is breaking news about the Ray brothers (do you remember them?) who were fire-bombed out of their trailer home in Florida, because the three boys had hemophilia and HIV.

Barry and his older brother John were born with hemophilia and each contracted HIV. John died, as did Barry’s brother in law. Barry is creating the Hemophilia Archive to preserve the memories of our past. Our past, the mass contamination of thousands, is truly unique in the annals of medical history. Each life deserves to be remembered.

Coincidentally, I am going this week to see the Boston premiere of “Bad Blood,” the new documentary about the HIV contamination of the 1980s. I’ve seen it already, have reviewed it in this issue of PEN, and on Wednesday night will take my family to see it. I urge you all to see it as well, and to help Barry build his archives.

Take a break from your own home movie archives, as I will, or from recording the present–Thanksgiving, hockey games, school plays– to help our community preserve its precious past. And thanks to people like Barry and Bad Blood director Marilyn Ness for helping to preserve our past. (Archived photo of Laurie and Brian Craft, our hemophilia comedian, another fallen hero)

See you in New Orleans!

Laurie Kelley November 8, 2010

I am looking forward to arriving in New Orleans this week, to attend NHF’s 62nd annual meeting. I haven’t missed one in well over 15 years. There should be lots to talk about, with the new Health Care Reform bill passed this year, and the showing of the new documentary “Bad Blood.”

I’ll be facilitating a great symposium on Saturday morning, called “Build Your Tomorrow Today,” hosted by Baxter BioScience. The topic is a good one for anyone with a transitioning person with a bleeding disorder such as a teen, college kid, or even an adult who is looking for a new line of work. We will have two expert speakers: Art Wood of PSI, who will address the insurance issues that come with new phases of life. And Don Molter, a career counselor, Indiana Hemophilia & Thrombosis Center. We’ll also have community members give testimonials about their experiences in trying to change jobs or careers, and handling insurance,

Breakfast starts at 6:30 am and the program starts at 7 am sharp; see you there!

Great Book I Just Read
Genius on the Edge: The Bizarre Double Life of Dr. William Stewart Halsted by Dr. Gerald Imber

This is the amazing story of an American hero, the founder of modern surgery. Consider that just 100 years ago most doctors only needed a high school exam to get into “medical school,” and most had never even seen a patient by the time they graduated! It was more snake oil than science, and this at a time when Europe, particularly Germany, surged ahead in medical advances. In 1850 there was no anesthesia, no germ theory, no blood transfusions and few surgeries were even performed because the outcomes were usually disastrous. The best surgeon was usually the fastest. Patients who faced surgery often died of infection, gangrene or shock from blood loss.

Then along came Halsted, and changed all that. He studied in Europe, became a surgeon, and helped to create the leading edge medical school at Johns Hopkins University, the premiere hospital in America and one of the few that didn’t flunk the Carnegie Institute’s national assessments. He initiated the aseptic technique in America, which cut infections up to 90% or more following surgery. He insisted that everyone use latex gloves; he pioneered mastectomies, hernia repairs, and more. And even more, he trained men who became outstanding leaders and pioneers in their fields, including William Osler, William Henry Welch, Harvey Cushing (there are bios on each and I am going to read them! These men are like superheroes).

The book delves as much into his bizarre personality and personal life as much as his towering achievements. He was addicted to cocaine, and later morphine, which he apparently never kicked. He was fairly antisocial, and quite particular about his clothes and Italian shows–yet his house was cluttered like a hoarder! There is no doubt that his mark on history is great.

Whenever you or your loved one has surgery in the US, give thanks to William Halsted, whose high standards, complete dedication and genius, saved literally countless lives. I can’t wait to go to Johns Hopkins someday and see his portrait. I feel like I know him from this excellent book! Three stars.

NHF’s New Direction, Movie

Laurie Kelley November 17, 2008

The NHF ushered in new leadership at the 60th Annual Meeting in Denver this past week, just as our country has voted in new leadership. With many parallels to be made, there is a feeling that our community is ready for change. Val D. Bias, person with hemophilia and already a prominent leader in our community, was hired as the new CEO of NHF. The community faces a multi-front challenge to its current status: increasing pressure from payers to lower reimbursement rates; payers forming specialty pharmacies to switch patients away from traditional home care companies and 340B programs; tightening of funds to donate; speaking with one voice and one message; forming coalitions with other rare disorder groups; rising obesity in the bleeding disorders community. Many of these challenges were addressed in depth in the various workshops

About 2,000 attendees were said to be present at this historic meeting. For most it was a great reunion of long time friends and colleagues, and for many it was a first glimpse of the community with all it has to offer.

I have been attending NHF meeting since 1992, and saw many long time friends. In speaking with representatives of industry: home care companies, HTCs, pharmaceutical companies and the NHF chapters and hemophilia nonprofits, the most frequently mentioned word could easily have been “change.” Things are changing in our community, and without vigilance, a voice, a strategy and action, we could stand to lose many of the gains we have fought so hard to win over the last decade in choice and access of services and products.

Opening Ceremony: Theatrics or Thunder?

Perhaps this is why the opening ceremony was so different than any other I have seen. The room was a Democratic or Republican National Convention theme. Vertical banners with state names were placed in sections; a large screen projected images from the podium; and red and blue balloons poised overhead in a net, waiting to be spilled. Different, definitely different, people murmured. There was a cordoned off area with red, white and blue streamers: only certain people were to sit there, apparently.

Then the lights went out and the somber and foreboding 12-minute trailer of “Bad Blood” was shown. When it was finished, lights went out again, then a spotlight shown on Val, alone on the podium, seated on a chair. Val spoke for most of an hour, sharing his vision of where NHF should lead the community. No doubt aware of the audiences’ curiosity about the trailer, he stressed, “Let’s put our past in a place of honor, where it belongs, and move forward.” With that he introduced the Campaign for Our Future, which was already introduced to chapter leaders in June.

The slogan is: Access to Care Today, Achieving a Cure Tomorrow. Val stressed four areas of focus:

Government awareness and support
Education for all life stages
Access to care at HTCs
Research and training

A check for $2 million was presented from Novo Nordisk to support the campaign. Most if not all the manufacturers have also contributed to the campaign, which hopes to raise $10 million to implement the campaign. Then the balloons overhead were released and everyone cheered and applauded. It seemed to be a new start for the NHF, and most people left feeling upbeat.

Later on, as people filtered out of the conference hall, there seemed to be second thoughts and questions by people. Many asked each other, “What did you think?” The trailer for “Bad Blood” was grim, dark, and pointed fingers some said. What was the point of the film? Have we not had 23 years of success, with no documented viral transmission? “What does the movie have to do with the new campaign?” one attendee asked. “If it’s for the future, why are we bringing up this past again?” Some people said they cried just watching the trailer as it evoked strong emotions of children contracting AIDS in the 70s. Some had nodded their heads approvingly as the film was being shown. Others feared the film was too strong, too biased, that it set the wrong tone for the NHF meeting: the movie would stir up negative feelings and fear in the absence of adequate general information about blood safety to new parents at a time when plasma products are just making a comeback. Everyone suddenly seemed to have a strong opinion. It was indeed a different kind of NHF opening: thunderous to make people take action, or theatrical to gain attention?

There was a lot to think about, and a lot to do. I was privileged to attend the Medical and Scientific Affairs Council (MASAC) to present my factor donation program, Project SHARE. As we donate millions of units of factor each year, we thought it a good idea to let MASAC know how we operate and answer any questions they might have.

The two and a half days NHF conference were filled with workshops, lectures, and symposia on all types of subjects related to hemophilia and von Willebrand Disease. Social events included lunches, raffles, and the final event, sponsored by Baxter: a wonderful and lively band, dancers, plenty of food, picture taking and dancing. Everyone got in on the dancing, which went till 11 pm. NHF planners and staff are to be commended for their ability to accommodate so many people with so many needs in so many sessions so perfectly and graciously.

If you attended NHF’s Annual Meeting this past week, please feel free to leave a comment! I’ll write next week about some of the meetings I attended while at the meeting.

See all the photos here!