“Exploring the Next Frontier” was the theme for the 69th annual National Hemophilia Foundation meeting in the dazzling city of Chicago. A record-breaking 2,987 community members flocked to the Windy City (do you know why it’s called that?)—patients, treatment center staff, industry representatives and hemophilia organization advocates—to share stories, to educate, to network, and to learn.
For me, it was my 25th annual meeting, and more like a huge family reunion. With so many friends from past meetings and local chapter meetings and correspondence, on top of all my new friends on Facebook, it was almost impossible to go from point A to point B without bumping into someone I knew!
Brian Andrews, chair of NHF, opened the weekend-long event Thursday evening by welcoming everyone; Val Bias, CEO, stressed inclusiveness and our diversity: individually he welcomed the VWD community, the FX, FI, FXIII, women with bleeding disorders (not VWD but hemophilia!) communities, who all stood up. Val then placed the focus on the National AIDS Memorial Grove, San Francisco, on which names of those with hemophilia lost to AIDS are carved. A touching video showed the memorial, with comments from community members, in particular Jeanne White-Ginder, whose son Ryan White, our own national hero, in 1982 put a tender young face to the scourge of hemophilia/AIDS by refusing to accept being ousted from his school. His stand led to a national movement to better understand the suffering of AIDS patients, the discrimination they faced and the erroneous fear that electrified Americans, most of whom believed you could contract HIV just from a handshake.
It was a beautiful video, and Jeanne concluded it with a heartfelt, tearful speech about her love for our community. Val asked for donations, to raise $50,000 for the Memorial, and by the close of the conference, $41,000 had been raised!
The next few days were jam-packed with activities, educational sessions, and walks through the industry and nonprofit booths downstairs, where consumers could play games, speak with reps, and pick up literature on products and services.
Our own Save One Life had a booth that actively received inquiries on how to sponsor a child with a bleeding disorder in a developing country.
The highlight of my visit was the Octapharma symposium Friday morning, showcasing the documentary trailer for “Bombardier Blood,” directed by Patrick James Lynch, who has hemophilia A. Patrick shared the incredible story of the making of the documentary—a project of which I was a part! I traveled to Nepal (visit #4) to introduce Patrick and his team to the Nepalese Hemophilia Society, and to watch as the team filmed Chris Bombardier (factor IX, from Denver) visit the treatment center, travel to patients’ homes, and attend a fun cultural evening before heading out to attempt to summit Mt. Everest. I also accompanied Chris, his wife Jess and photographer Rob Bradford, all the way to Everest Base Camp.
Although I was with them the week in Kathmandu, and then endured the rugged 9-day trek to base camp at 17,500 feet, and then shivered three days at base camp, with 1° temps at night, nothing, nothing stirred me as much as watching the documentary. The full impact of Chris’s sacrifices, the months of training, overcoming fears, and the pressure on this young man to succeed, hit me full force as we saw in six minutes scenes from Denver, from Nepal, patients, base camp… and Chris on the summit, talking through his oxygen mask, holding a banner on which was written the names of Nepalese patients with hemophilia. He did it for them; he did it for us.
Over 360 people had permits to climbing Everest that season; 60 summited, including Chris; 10 died, including a world class alpinist, Ueli Steck. Chris risked his life to achieve something no one in history had done: being the first with hemophilia to summit Mt. Everest. Listening to Patrick, and seeing the beautiful trailer, we were all wiping away tears. The human heart has so much potential for courage, for sacrifice for our fellow humans, for overcoming fear and pain. Chris embodied all this.
I worried for the next speaker: how do you top that? But you know, Seth Rojhani, a young man from Denver, nailed it. His story was incredibly motivating and uplifting: being born with hemophilia, then losing your ability to walk after having a spinal bleed, and the surgeons severing your spine accidentally. But nothing has stopped Seth. He loved sports, and with the full support from his wonderful parents (who I am proud to say I know) he participated in many sports!
With his favorite basketball team the Denver Nuggets, Seth Rojhani went on to form “Rolling Denver Nuggets,” a basketball team for wheelchair participants. I loved when he shared his formula for success:
He stayed on a consistent prophy schedule; He rested until all injuries healed; He visited his HTC often. Seth received numerous athletic awards, including the Bronze medal for his team in the Maccabiah Games in Israel this past July. And he promptly pulled out the gleaming medal for the audience to see! Seth said, “Hemophilia is a speed bump, not an obstacle.” He also shared that his father, Ira, told him, “Think positive and good things will happen.” His belief in this way of thinking has never let him down.
When asked of the three participants—Patrick, Chris and Seth—what was the biggest challenge they faced in life, Patrick mentioned losing his brother Adam. His brother never identified with the hemophilia community, and felt isolated, alone. He might as well lived on the outskirts of Nepal, exclaimed Patrick, without factor or comprehensive care. Patrick’s greatest challenge is overcoming the loss of his brother. Chris’s? Not Mt. Everest but needles! Chris has a needle phobia! And Seth? Being told no so much in his life.
The speakers deservedly received a standing ovation for their incredible stories and work. The three days were filled with symposia and sessions. For first time, the LGBT community had their own session, led by our own (New England-based) Justin Levesque. And I am proud to say that PEN was the first publication in our community to publish an article about the community needs, also written by Justin.
Women with bleeding disorder and those with VWD were also given lots of meeting and air time. You can see a big shift in mindsets this year about inclusion in our community. Those on the fringe are now being heard.
There were also sessions for siblings and one for men only; sessions about pain management, addiction, and gene therapy. The only bad thing about NHF’s Annual meeting is that there is so much to see, hear and do! I couldn’t take in everything unfortunately.
The event ended with a stunning visit to the world famous Field Museum, sponsored by Bioverativ, where families could see the wonders of nature and natural history. My favorite display are “The Ghost and the Darkness,” two man-eating lions from Tsavo, Kenya, which were killed in 1898 after they had killed many workers on the railroad. A Hollywood movie starring Val Kilmer and Michael Douglas tells a somewhat fictional version of the story. It’s a good story but better to see them for real at the museum.
At least something at the Dallas meeting was older than me—the NHF! This is my 24th year of attending NHF meetings and I was thrilled to catch up with so many colleagues and friends.
Kim C. and John Urgo of RUSH, with Zoraida
“Boots on the Ground” refers, I think, to our exceptional advocacy work, a history of which I liken to the Big Bang theory. At one time there was darkness out of which an explosion heard around the universe occurred, and new stars were born. The darkness, of course, was the HIV era, the “holocaust” in the words of many, when half our already small community was decimated by contaminants in the nation’s blood supply and blood-products used for clotting blood. The Big Bang was the outcry from patients, who formed groups like the Committee of Ten Thousand, and later Hemophilia Federation of America, to take on corporate America and the government of the United States itself. These people—Corey Dubin, Dana Kuhn, Tom Fahey, Val Bias and more—were our stars, emerging through that dark time. Many of our stars have burned out, passed away, but many still burn bright.
Laurie Kelley with Texas hemophilia friends Andy Matthews and the famous Barry Haarde!
They’ve now harnessed all that energy, knowledge and power and shine it on industry and insurance companies, protecting our need for safe products, available products and access to all products. And with them are hundreds of families who have joined that cause.
To remind us all of where our advocacy comes from, NHF spotlighted Ryan White, one of our community’s first advocate, certainly our first child advocate. An Indiana native, Ryan won the right for all children to attend school who had hemophilia and AIDS; his mother Jean White was interviewed and I think we all had tears, when she teared up. There are not enough words to express how courageous that boy was.
NHF Chair Jorge de la Riva gave an impassioned speech that praised the efforts of all our community to stand up and protect our needs and rights. He also challenged us all to look deep within to ask What more can we do? Can I do? We can all do something.
NHF CEO Val Bias’ speech stood out for his challenge to include the fringe members of our community, especially women with bleeding disorders (who are really not just carriers), inhibitor families and those with rare bleeding disorders, like factor XIII. Indeed, he called out to those members to stand and be welcomed, and the audience exploded into applause when an entire row arose.
I would add to that the LGBT community, which has existed quietly. And yet they are some of our greatest activists. Don’t know what LGBT stands for? It’s time to look it up, and get to know them.
Someone older than me? Joe Pugliese, my oldest friend in hemophilia
Pharmacokinetic testing was a hot topic: how does your child react to infused factor, especially if he is on prophy? Only one way to learn how quickly the factor fades over time from his body. Not every child can be prescribed a three-times-a-week, Monday/Wednesday/Friday prophy regimen. Running a blood test consecutively over a few days to test his levels will reveal how quickly factor is used up—in other words, what’s his unique half-life? This topic dovetails perfectly with the release of our one-time newsletter YOU, arriving in your mailbox soon! It’s all about your child or loved one with hemophilia’s unique needs, including his or her particular half-life, so vital to know.
One huge change I noticed? Years ago, specialty pharmacies and homecare companies dominated the exhibit hall floors, with stuffed bulls to ride and take a photo with) and even once a huge pirate ship (remember the pirate ship anyone?). These companies outdid each other in a bid to get potential consumers to their Vegas-style booths. Now, they have shrunken to little booths on the periphery, while the megabooths and choice space goes to pharma. Why? Specialty pharmacies have consolidated into a few monster, dominant entities. They don’t have to compete for business anymore; they own us. Pharma on the other hand, is competing fiercely for your attention with a glutted pipeline of products in clinical studies. Prepare for lots of pharma advertising in the new year.
Please go on line and read up on the three-day annual event, which brought treatment staff from HTCs, consumers, nonprofits, manufacturers and homecare companies all together for hours of learning and connection. Congratulations, NHF, on another successful year! Keep these boots on the ground, with sharp spurs.
More photos from the event to come!
Good Book I Just Read
How to Love [Kindle]
Thich Nhat Hanh
Short essays on the nature of love, peace and how to find these traits within so you can better encourage the transfer of these to others in need. Like all Hanh’s books, it is easy to read and leaves you feeling more tranquil and loving. Three/five stars.
In the 27 years I’ve been in the hemophilia community, I’ve seen us searching for celebrities with ties to hemophilia. For spokespeople, supporters, to help us raise awareness. We’ve come close a few times, but no celebrity we know of actually has hemophilia or has a child with hemophilia.
Last week we showed how the Beatles had a brush with hemophilia. Now our friend Richard Atwood has uncovered another connection: Bill Cosby. Who knew?
Richard writes a review of a book on Cosby: William Henry Cosby Jr., or Bill, was born in Philadelphia on July 12, 1937. He was the eldest of four children, one of whom was epileptic, born to Anna and William Cosby. The sometimes fatherless family lived in the projects in a poor district of North Philadelphia. As a child, Bill was shy and used humor to gain acceptance. Though he was admitted to a high school for gifted students, Bill did not fit in and transferred. After being held back for the 10th grade, Bill dropped out of school and later at 19 joined the navy. While serving as a hospital corpsman, Cosby earned his high school diploma. Older and more serious, Cosby next enrolled at Temple University where he ran track and played football. He also started earning enough as a stand-up comic to drop out of school. In 1963, he met Camille Hanks, a psychology major at the University of Maryland, and the couple married on January 25, 1964.
Cosby also performed for the first of many times on The Tonight Show in 1963. Both live on stage and recorded on vinyl, Cosby presented his comedic monologues that created a mythical childhood blending fact and fiction. Beginning in 1965 for three years, the television series I Spy was groundbreaking, and Emmy award winning, for the young actor. That same year, the first of his five children was born — Erika was soon followed by Erinne, Ennis, Ensa, and Evin. Cosby’s interest in teaching children through documentaries and television programs led to his enrollment at the University of Massachusetts to earn master’s and doctorate degrees in education in 1976. More television series, cartoon series, commercials, records, movies, and books, plus his stand-up comedy tours, increased his celebrity status, income, and awards, but not without some controversy. His humor offended some, and Cosby could not please others for his perceived lack of involvement in the civil rights movement. Richard notes that this friendly biography of Cosby glosses over any personality difficulties, such as being irritated by continual questions about race.
As a celebrity, Cosby helped raise funds and served on advisory boards for organizations such as the American Cancer Society, the American Heart Association, and the Black Film Foundation. Sometime before 1971, Cosby was also chairman of the National Hemophilia Foundation. (pp. 91-92).
Representatives of NHF could neither confirm nor deny that Cosby once held the title of chairman of NHF. The December 4, 1969 issue of Jet magazine reported that Cosby was named honorary chairman of the National Hemophilia Foundation, a more likely distinction for his fundraising role.
The book is by Ronald L. Smith, 1986, Cosby. New York, NY: St. Martin’s Press, 181 pages. Celebrity is a double-edge sword. Now, with allegations of sexual misconduct and rape by Cosby flooding the media, it’s probably a good thing there are no ties with NHF any longer.
Great Book I Just Read
It’s So Easy and Other Lies [Kindle]
McKagan tells the interesting, shocking and even poignant story of his rise from obscurity to incredible fame as a founder of Guns N’Roses in 1984, when he answered an add for a bass player by someone called Slash. Only 20 years old, naive and shy, he was thrust into the world of music industry sharks, massive egos, crazed fans, brutal travel schedule… and drugs. It’s hard to overestimate the impact the band had on his life: dubbed the most dangerous band in the world, headed by a seemingly ego maniacal front man, Guns N’Roses would sell more than 100 million albums. What makes this story so different than the ones I read by Slash himself and Chuck Negron recently, is the tone and the obvious depth McKagan has. He is a sensitive soul who loves his mother. He grieved when fans were crushed during one of their concerts. He isolated himself when he became addicted, sought help, and soon became clean; he buried himself in reading the Classics, shunned women, took up mountain biking (great section to read), became a devout martial arts student, and most amazingly, went to community college, then college to complete his degree with the enthusiasm of a child. It’s hard not to love this guy and applaud his amazing come-back and story. Wonderful read. Four/five stars just for heart.
Last summer, I blogged about a new program called My Life, Our Future, a nationwide initiative between NHF, ATHN, Puget Sound Blood Center in Seattle and Biogen Idec that offers free genotyping to people with hemophilia in the US. As you may have seen around NHF’s Twitter chat on 7/23, the program has since successfully enrolled more than 1,000 participants! This is a significant milestone for the program and a great example of our community joining together and taking action to help advance scientific breakthroughs.
During the chat, the community showed great interest in the program and how it works. There are two components to My Life, Our Future (or “MLOF”). The first is a blood test that enables people to learn more about the specific genetic mutation that causes their hemophilia. Already, 61 new mutations have been discovered through the program. Participants also have the option to contribute their data and samples to a central repository. Once 5,000 people contribute to this research “bank,” scientists will be able to study the data and samples, potentially leading to improvements in care and treatment.
Getting Involved for Future Generations
Guy Law of Erie, PA, participated in MLOF for just that reason. “Hope comes to mind when I think of MLOF,” says Guy. “I hope my participation in the program can positively impact families with hemophilia in the future.” Guy, who has severe hemophilia A and has long been an advocate in the community, learned through MLOF he has a unique mutation. “I know the word “cure” gets thrown around and I’ve accepted the fact that in my lifetime there may not be one,” he said. “But if I can contribute to a research project that may eventually lead to a treatment breakthrough, I’m happy to.”
Dr. Barbara Konkle, director of clinical and translational research at Puget Sound Blood Center, hopes that everyone with hemophilia A and B participates in MLOF because of its value today and tomorrow. “Genotyping provides meaningful information about a person’s hemophilia,” said Dr. Konkle. “By building a robust bank of data and blood samples for researchers to study, we can deepen our understanding of the disorder and hopefully advance the science.”
Interested in participating? The program is currently available at 42 HTCs across the country, and expanding to additional locations regularly. Visit the MLOF site to see if your HTC is offering the program.
MLOF By the Numbers
• MLOF is now available at 42 hemophilia treatment centers in 26 states
• 80% of participants have opted to participate in the research repository
• 61 new mutations have already been found
• Once 5,000 people have consented to participate in research, scientists at academic institutions or companies can apply to study the data and samples
Great Book I Just Read
Flight 232: A Story of Disaster and Survival [Kindle Edition]
by Laurence Gonzales
Sioux City, July 1989: one of the worst aviation disasters ever. A DC10 cart wheeling on the tarmac after the hydraulics completely fails. Gonzales tells the story of the crash over and over, through different angles by probing the different experiences of many involved: survivors, crew, rescue workers. His excellent research in interviewing so many who lived through this puts you there; he also delves deeply into the engineering flaws that led to the crash. You will learn a lot about titanium. And that so much of survival in an airplane is sheer luck. It is amazing that so many survived the crash; the pilots were absolutely heroic. Gonzales is an expert on survival, and follows the survivors just after the crash and then a year later. The testimonials are surprising—what goes through someone’s mind, as a plane is disintegrating—and poignant. The most important thing in our lives is relationships, most conclude. Four/five stars.
In the US, this is Hemophilia Awareness Month, a chance for us to let others know who we are and what we need. Our community just did that last week on Capitol Hill, storming the hallowed halls and meeting with state representatives and senators when possible, to inform them about bleeding disorders and mostly about our funding needs.
I participated for the first time last year and loved it. An illness kept me away this year (all better now!) and how I missed it! I was so impressed with the event. It’s a chance for all of us, well known and not so well known, to share our stories. In fact, it’s most impressive when the average mom and dad, and even their children, meet with Washington folks to tell them about life with hemophilia.
Visit the NHF website (www.hemophilia.org) or HFA website (www.hemophiliafed.org) to learn more.
Speaking of HFA, what a fabulous website they have! And their annual meeting is coming up on March 27 in Tampa, Florida. While there are no scholarships left to support attending, if you can at all try to attend, please do. It’s a very different flavor than the NHF events. Both are great, but different.
What can you do for Hemophilia Awareness Month? First, learn more about the disorder yourself. It’s hard to have others appreciate what you endure if you don’t have a ready and coherent “script.” I was on Facebook most of the weekend contacting the many people who have reached our to me this past year, sorting out who is actually related to hemophilia, to keep them as friends. Some are first-time parents of a child with hemophilia and I am delighted to send them our educational materials.
Second, check in on our website (www.kelleycom.com), as well as NHF, HFA, PSI (www.youneedpsi.org) and your local hemophilia organization. Make it a habit every couple of weeks to check out a new website. There are so many!
Try to attend a hemophilia event. It might be the HFA one in March, the NHF one in Washington DC in September, or maybe a local one near you. Meet families, meet physicians, meet factor manufacturer reps. The bottom line is–get active and involved! We need you and the world needs to know about hemophilia. Help pave a great future for your child starting this month!