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.

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)

NHF’s 62nd: Carnival, Concern, Unity

Laurie Kelley November 15, 2010

The theme of the 62nd Annual Meeting of NHF was “Marching Forward,” appropriate for a place like New Orleans, where you can expect a high school marching band to turn the corner of your street at any time. Situated at the Marriott on Canal Street, just a carnival bead’s throw from the Mississippi River, the event hosted about 3,000 community members, including physicians, nurses, social workers, nonprofit staff, NHF reps, pharmaceutical and homecare reps and of course, consumers!

My week started with a five-hour workshop on Novo Nordisk’s new HERO program, the largest psychosocial research project in hemophilia history. We gathered a select group of HTC and consumer representatives to discuss ideas to bring the results of HERO to the US, to share with our community: what can we learn from the results and what to do with the results? It was a lively and challenging task, but with a great group that meshed well, it was also fun!

Opening night was heralded with a marching band and carnival characters on enormous stilts, handing out strings of beads to all. NHF Chair Stephen Bender and father of a daughter with hemophilia gave a moving opening speech recalling his daughter’s birth, and how he became an advocate for better health care as a result of their harrowing experience. Executive director Val Bias gave a motivating speech about unity in the bleeding disorders community. He also unveiled a new campaign for women with bleeding disorders, called “Victory for Women.” This will replace Project Red Flag.

Later we walked through the exhibit hall, which contains booths by all the vendors who serve our community, and all had a Mardi Gras theme. There was face painting, games and great food.

There were many sessions on a variety of topics related to bleeding disorders. Women with bleeding disorders figured prominently as a topic. I also attended a very interesting town meeting by the Committee of Ten Thousand—COTT. COTT is often referred to as our third national organization. We have NHF, HFA and COTT. This certainly doesn’t refer to third place. Each of our national organizations has a vital role to play.

This two hour meeting had two topics: blood safety, prompted by the new movie Bad Blood; and privacy issues for patients. The first topic was kicked off by Corey Dubin, a person with hemophilia and an icon in our community. Next to him was Nathan, representing the Gay Men Health Crisis organization. This year 18 senators sought to repeal the FDA ban on blood donations from gay men in light of all the safety procedures and testing performed in the US. The ban has been in place for 17 years, started during the HIV contamination of the 1980s.

A lively discussion took place but what was unique and wonderful was the mutual admiration and respect of COTT and GMHC. Each respected each other’s view about blood safety and the right to donate blood, and whether that even was a right.

The second topic unleashed a firestorm of concern: patient privacy rights. Are patients being adequately informed of how their data is being used? One patient, a well known advocate, stated that patient data is gold. People in our industry make money off of patient data, good money. How is this safeguarded? Patients are signed up for clinical studies—are they well informed? With health care reform, and anticipated countermoves by the insurance industry, patient data is needed and desired to justify decisions to restrict access to care, access to products or to protect clinical treatments. Data is everything. But do patients know who has their data?

With representatives of several different and independent organizations and patient groups—and industry—in the audience, it became clear that each group had similar questions about ethics, funding, transparency, and patient protection of any organization collecting patient data. I explained how LA Kelley Communications collects patient data through our mailing list, and how fiercely we protect it.

For other groups, it’s not as clear what the data is to be used for ultimately. Will it be sold? There’s a market for it. A big discussion ensued about bringing various groups to the table to discuss privacy and to get some questions answered. COTT has acted as a watchdog for blood safety, and now may act as a watchdog for patient privacy— a topic more vital than ever in this era of health care reform. Patient Data equals power, power to discriminate, make policy, earn money, effect government policy… the possibilities are many. This data is our data—our child’s data, our carrier daughter’s data—and we need to protect it by knowing who has it and what they plan to do with it.

After the town meeting, some people went to social events. We had a special guest—Usha Parthasarathy from India, with whom I had just finished a 16-day tour of India. She was able to promote our Save One Life program to many people, and secured more sponsorships for the 300 children who are waiting for sponsors.

On Saturday morning I facilitated a symposium hosted and funded by Baxter Healthcare, titled “Paving Your Way, Protecting Your Future.” Guest speakers included Don Molter, social worker and career counselor at the Indiana Hemophilia and Thrombosis Center, and Dr. Art Wood, vice president of Patient Services Inc. Don stressed the importance of taking the SATs or ACT, applying for scholarships and to be open to education even later in life—especially in this economy, when many people need to rethink their career choices. He introduced the Baxter Education Advantage Scholarship, which helps people with funding for college and also vocational training. This is open to anyone, not just those on Baxter’s products.

Art’s presentation included salient highlights of the ACA, the new health reform act, and how this may impact families with bleeding disorders, and how patients can take action now to get informed and learn more. It will be absolutely vital for everyone to read their insurance policy and to read updates regarding the ACA and how it impacts individual policies.

We also had two community speakers: David shared a very touching story of having hemophilia, HIV, hepatitis, losing his thumb in an accident… and losing his wife of 24 years when the marriage was overwhelmed. With a deepening of his faith and assistance from his HTC, he successfully returned to work and now is remarried. Dwight and Kathleen are parents of eight children, four with hemophilia, and shared their trials in trying to stay insured. With the help of PSI, they were able to make it. Their handsome son Patrick was in the audience, admiring his parents.

The three day event closed with a final event, also sponsored by Baxter, at a warehouse where we walked by enormous plaster of Paris statues of King Kong, Pokemon, King Neptune, the Cowardly Lion and Yoda—all Mardi Gras characters. Also we saw floats being prepared for the next Mardi Gras. It was really amazing! At the end of the walk was a large indoor room to house about 2,000 people who feasted on New Orleans cuisine, dance to an excellent band, and have their fortunes read by Tarot card readers. I caught up with my friends from California—Laurel McDonnell, Paul and Linda Clement—and enjoyed the company of our very special community.
Please visit these websites to learn more:
www.cott1.org
www.uneedpsi.org
www.thereforyou.com
www.saveonelife.net

The Beginnings of Transfusions

Laurie Kelley October 26, 2009

This week I am off to the National Hemophilia Foundation meeting in San Francisco, and I thought an historical look at blood might be in order. I can’t think of a better story about blood than one that starts with a madman running naked through the streets of Paris in the 17th century. True.

Chapter 1 of the wonderful book Blood by Douglas Starr starts with poor Antoine Mauroy, who suffered “phrensies.” From time to time, he would take off his clothes, run through streets and set fires. Eventually, doctors experimented on him to try to cure him. Mauroy became the guinea pig in an experiment that forever changed medicine. In 1667 Jean-Baptitste Denis, physician to king Louis XIV, transfused half a cup of blood from a calf into Mauroy. He hoped the “gentleness” of the calf would infuse as well. Despite the discoveries of the Renaissance and the advances made in science, doctors still believed the blood somehow carried the characteristics of the creature, a concept known as “vitalism.” For example, a stag’s blood carried courage; a calf gentleness. Since the ancient Greeks, the body was not yet viewed as a system, and doctors knew nothing of hormones, genes or viruses. It would be 200 more years before they discovered that water transported disease! In the 17th century, doctors believed that in the “humors”: phlegm, choler, bile, blood. The Greeks believed that good health meant maintaining a balance of the humors in the body, so draining blood and purging digestive system should help. This is where blood-letting as a medical treatment evolved.

Blood– it has a colorful past! And worth reading about. Be sure to read Blood by Douglas Starr.

Other doctors and researchers dabbled in finding out the secrets of the blood. William Harvey found valves in blood vessels, which led him to think that the body might be a system, more mechanical. Christopher Wren (the famous architect whose beautiful cathedrals I just glimpsed when I was in London last week) and Robert Boyle, founder of modern chemistry, dabbled in circulation. Richard Lower tried transfusing blood from one dog to another: he discovered how to transfuse from an artery into a vein and it worked.

What happened to our madman? Antoine Maury died from the procedure. What doctors didn’t know is that proteins in the blood from one animal–even from another person– are not always accepted by the body. The immune system may attack the foreign proteins. Dr. Denis was accused of murder. He in turn sued Antoine Mauroy’s widow in 1668 for slandering his reputation. Turns out Mauroy actually died from arsenic poisoning– by his wife! Still, the French Parliament’s banned all transfusions involving humans. Similar actions follow in England and Rome. And 150 years would pass before it was tried again.

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!