I’m writing from Phoenix, where a weekend of education and networking for people with von Willebrand disease just wrapped up. The Arizona Hemophilia Association hosted the first annual national von Willebrand conference. Cindy Komar, the very capable executive director of the AHA and her team assembled a great cast of speakers and facilitators, and provided entertainment for the kids for the weekend-long event. It was a tremendous conference and hugely successful.
Saturday morning started with a rousing speech by Jerry Ervin, who shared his hard-luck story and how he overcame many environmental challenges to become educated and a motivational speaker. Then Drs. di Paola and Kouides shared latest developments in VWD treatment. Afterwards came break out sessions, in which I presented the changing insurance climate and how we can protect our access to treatment. Other sessions included dental care, financial planning, parenting and atypical VWD.
25 states were represented at the event, and I saw many friends in the community, from patients and families, and even my dear friend Julie Winton, with whom I climbed Kilimanjaro last August!
This morning we had two great speakers, Jeff Leiken, who spoke about attitude and removing bias from our way of looking at the world, and Pamela Crim, who shared her personal story, from a stroke at age 19 while just a newlywed, to adopting two little orphans from Juarez, Mexico–truly an incredible life story!
Outside the teens were treated to a demonstration by a hot air balloon pilot, Michael Glen. His inspiring talk about ballooning focused not on the fact that he’s a paraplegic (the only one in the world who is also a balloonist) but on how nothing can stop you from achieving your dreams. He was fantastic! I’d highly recommend him for teen workshops (www.rollingpilot.com)
We closed the event by paying our respects to the lady who was the pioneer in VWD advocating and educating, Renee Paper, my co-author and friend. We keenly felt her absence, but we’re pretty sure her spirit was with us.
Thanks to CSL Behring for the funding for making this fantastic event happen, and to the Arizona Hemophilia Association for their time and dedication.
You could say England is lucky: they have the best hemophilia publicity in the world. Their longest reigning monarch, Queen Victoria, had a son with hemophilia and so gave hemophilia a place in royal history, hence the “royal disease” nomenclature. And she exported hemophilia. Germany, Spain? Hemophilia went straight to the royal families. Russia? The Crown Prince had hemophilia and while his life was cut short, he went down in history, as did hemophilia.
We’re not so lucky. The US has a publicity problem with hemophilia, not counting the Dark Ages when hemophilia was so closely linked to HIV. As it’s president’s day, it got me thinking: have any presidents known about hemophilia or known someone with hemophilia?
Prior to Ronald Regan, we don’t know. Regan seems to be the first to take notice of hemophilia, despite dire warnings from CDC in the early 1980s, when HIV was showing up in those with hemophilia. It took Regan’s Hollywood buddy Rock Hudson, who contracted HIV and stepped forward into the limelight in 1985, for Regan to finally take action on the nation’s blood supply and help stem the contamination.
Thanks to our great community activists, we wanted to keep hemophilia in the presidential eye, but it took a back seat once the HIV problem was controlled and recombinant products available.
Then came insurance problems. Big time. While campaigning, Obama, looking to connect on the insurance issue, was introduced personally to hemophilia through a Denver Town Meeting, where he made Nathan Wilkes–not just met him, Nathan introduced Obama to the televised Town Meeting! Nathan and Sonji Wilkes’ son Thomas has a high inhibitor and their medical bills were catastrophic. I know the Wilkes personally, and their story is incredible.
Apparently, Obama thought so too. He referred to the Wilkes family several times in the campaign. Obama is getting to know hemophilia. Just last summer, Obama had a photo op with HFA president Paul Brayshaw (hey, I know him too), in Paul’s back yard. Paul has fun telling about the secret service arrangements in preparing his humble abode for the arrival of the leader of the most powerful country on earth. Paul has hemophilia and Obama showed again support for our community. Which presidential contender knows hemophilia? So we have Obama. Newt Gingrich actually does know hemophilia. He took up hemophilia as a study back in 2003-4, before the insurance crisis. Why? My good friend Dave Madeirios, founder of Factor Foundation of America, hired Newt to examine hemophilia as a case study in chronic disease management and why the American system has it all wrong. And I got to spend a day with Dave and Newt, discussing issues regarding reimbursement. Newt was knowledgeable about hemophilia, reimbursement and had ideas on how to fix it.
It’s not looking too hopeful for Newt at this point, but should he get elected, he would be the first president to have in-depth knowledge of the hemophilia community. Mitt Romney, our former Massachusetts governor? I don’t know. He wasn’t in our state too often as governor! But as he launched the first mandated health insurance plan in the US in our state, something tells me he’d make a quick study of it all.
I just wrote a couple of weeks ago about long acting factor: Biogen Idec’s clinical studies have been in the works for a while, and CSL Behring just announced that they are starting a global phase II/III, multi-center study.
On January 5, Baxter announced that they are launching a Phase I clinical study of “BAX 855,” a longer-acting (PEGylated) form of a full-length recombinant factor VIII (rFVIII) protein, based on Advate’s manufacturing process. BAX 855 leverages Nektar Therapeutics’ proprietary PEGylation technology, which is designed to extend the duration of activity of proteins and larger molecules.
This means, if the trials go as hoped, longer acting factor in the bloodstream, requiring fewer infusions to get the job done.
So that’s three companies in clinical trials for longer-acting factor! More great news for our children’s future.
Great Book I Just Read Born to Run by Christopher McDougall (Kindle version) Stymied by a nagging injury, McDougall questions his doctors, and sets out to find a way to continue running, which leads him to the Tarahumara Indians in Mexico’s deadly Copper Canyons. These people living in near isolation, are able to run hundreds of miles without rest or injury. McDougall shares his adventure of traveling to meet them, interspersing chapters with the history of ultra running and introduces all its quirky characters, the history of the Tarahumara, and making a good case for running barefoot! The book has stirred some controversy–has he done a disservice to the Tarahumara, ruined Nike’s reputation and exalted barefoot running without citing his studies? Whatever he has done, it is a joy to read due to his crackling style, which is witty, colorful, funny and has great cultural references–this guy knows how to write! I’m not sure I buy everything he’s selling, but I did go running today, and loved it. Three star/four.
You may have heard that the hemophilia community is a bit worried about developing leaders. Our generation is getting “old,” and has fought our many battles, and continue to fight on the insurance front. We need young people with talent, ambition, compassion and vision to carry the torch in the future.
But are we victims of our own success?
We’ve made life good for the new generation of kids with hemophilia, and as expected, they are having good lives–and disappearing from our radar screen. We need them to come back, to pitch in, to help, to lead.
To address this, Bayer developed a unique program in our community to train young people to think about careers in hemophilia, or at the very least, to give back through volunteering. Bayer HealthCare offers the Bayer Hemophilia Leadership Development Program (BHLDP), and expanded it this year by adding a community element to the internship experience. The 2012 interns selected to participate in this prestigious program will spend five weeks of the eight-week program at a local hemophilia organization.
The company is currently seeking applicants who are attending college and have been touched by hemophilia. Those interested have until Monday, March 12th to apply for the program, which runs from June 18th-August 9th. Participating interns will engage in leadership training, hands on business projects, marketing and communications strategies, and help support the local hemophilia community. Additional details and the application can be found at www.livingbeyondhemophilia.com/intern.
Of the many organizations that applied to participate, four chapters were chosen to mentor and manage an intern. They are the Arizona Hemophilia Association, Bleeding Disorders Alliance Illinois, Hemophilia Foundation of Upstate New York – Rochester and Texas Central Hemophilia Association.
The 2012 program begins with a two-week orientation at Bayer HealthCare’s U.S. headquarters in Wayne, NJ, where the interns will receive training on communications, problem solving and leadership skills as well as work with people in a number of departments to gain insights into how various parts of the company operate. Interns will spend the following five weeks at the selected hemophilia organization, where they will gain first-hand knowledge about the work done on a local level and engage in projects building on the skills developed earlier in the program. During the final week at Bayer, the interns will report on their experience and present a project developed with their local chapter.
Bayer established the Hemophilia Leadership Development Program in 2007. Since that time, many program participants have become more active hemophilia advocates and have gone on to careers serving the community, government and industry.
This is a fantastic opportunity. If you know of a young person with hemophilia who has leadership potential, please have them apply today!
Great Book I Just Read The Killer of Little Shepherds: A True Crime Story and the Birth of Forensic Science by Douglas Starr (Kindle edition)
Starr never fails to engage. From 1894 until 1897 in the countryside of France, Joseph Vacher, a vagabond and discharged military enlistee, began a bizarre killing spree, from young women to little shepherd boys. Dispatching his victims rapidly, mutilating or violating them, and moving on immediately, he became a killing machine that terrorized France and baffled police. Forensic science was nearly nonexistent, and police imprisoned innocent people based on hearsay. Meanwhile, Dr. Alexandre Lacassagne, France’s leading expert in legal medicine and professor at the University of Lyon, dedicated himself to the case and in the process advanced forensic science. Ultimately, this became one of the first cases of determining what is legal insanity, as Vacher, once apprehended, became his own counsel in effect and pushed to be declared insane. A battle ensues between Vacher and Lacassagne, which would have repercussions for decades to come. Fantastic story, well written, and enlightening. Four/five stars.