January 2011

Superheroes Unite!

I just spent an exciting two days in Phoenix, Arizona at the National Organization Camping Conference for Hemophilia Organizations, more “tastefully” known as NACCHO. Now in its 10th year, this was nonetheless the first time I’ve been free to attend as a speaker. It’s a great program that teaches best practices and principles of camping for kids with hemophilia, generates a tremendous amount of motivation and allows attendees to interact and learn from one another. (Photo: Cindy Komar, and board planners)

I arrived late due to yet another snowstorm in New England, and it was clear the attendees already were bonded and excited. Led by “Big Dog” Pat Torrey, the theme of the entire meeting seemed to be “Superheroes.” Using this metaphor, camp directors were encouraged to think like a superhero: what skills did they have? How would they help and serve others? Big Dog found creative ways to keep bringing each session to a close around this theme. He encouraged people to get into their role by dressing as superheroes! This led to some hilarious improvising, as most attendees used whatever materials they could find at the event or at the hotel.

I was impressed to see camp representatives from Mexico, the Netherlands, the Czech Republic, Romania, England and India! NACCHO invites professional camping organizations to come in and share ideas and techniques applied to camps nationwide, and then find ways to make them applicable to a camp for children with bleeding disorders.

I was invited to speak about Project SHARE (our factor donation program) and Save One Life (our child sponsorship program). How does this relate to camping? Some developing countries have camps—indeed, I help to found a camp in the Dominican Republic, and have helped with camps in Romania. I also helped fund and run a camp in Zimbabwe, sadly their first and so far last one. Often things discussed at NACCHO are not applicable to camps in developing countries. When one speaker insisted that parents demand clean facilities, and showed a photo of a run-down lavatory, I thought, “That looks pretty good to me!” while the audience winced. When safety rates high here, overseas it’s simply a focus on factor being available. Different standards based on different realities.

The things that are the same? All kids want to meet other kids with hemophilia. All kids want to have fun. They need medical staff nearby in case of emergencies. All kids love to pretend, and the idea of a superhero is universal, whether it is a Marvel comics guy in a red suit, or a Norse god.

Most important: you cannot have a camp without factor, and most developing counties have no factor. Camp becomes a way to attract attention for factor donations and funding; it’s also a great concrete way for a nascent hemophilia organization, struggling to find a way, to provide a program and learn how to organize, delegate, and fund raise. Save One Life also dovetails with this program, as many of the kids who come to camp can be interviewed in depth, and can apply for financial aid through Save One Life. Through Save One Life, we’ve been able to have more children attend camps, or vice versa, join our program. Either way, they benefit immensely!

I’m afraid some of my searing images poked a hole in the bubble of elation surrounding the conference, but this is reality for thousands of children. We sometimes forget how lucky we are in America. People were touched more than shocked: following the presentation we raised enough money to sponsor two children! NACCHO planners decided one from India and one from Romania, and hopefully, this would be a perpetual gift that will come from each future NACCHO conference.

The conference celebrated Saturday night at an indoor racetrack where the attendees got to act like kids! Most went in “drag,” in their superhero costumes and there were prizes for best costume, as well as best camping ideas. I dressed as a cowgirl, and as I hung out with Usha, Save One Life’s program liaison from India, I told everyone that I was the cowboy and she the Indian.

If your chapter has a camp and you think you’d like to expand on your activities, programs and vision, NACCHO is the place to come.

Thanks to Bob Graham for the invitation to NACCHO, and to Cindy Komar, executive director of the Hemophilia Association, Arizona, and to Pfizer for providing all the funding for this great event!

Book I Just Read
Kissing Kilimanjaro by Daniel Dorr
This easy-to-read book details Dorr’s personal attempt to summit Kilimanjaro. It’s a nice read, done in one evening, as nothing is too technical or even historical. It’s interesting to see Tanzania through Dorr’s eyes, as he is a naïve newcomer: new to Africa and poverty. His girlfriend comes with him on his adventure. Failing the first attempt, he is haunted by his own inability to conquer altitude sickness despite being in good shape, and sets out to try once more. A good book to read for mountaineers or wannabes. Dorr is not a great writer; the text is like reading someone’s blog, casual with easy words and short sentences, but likeable. For those planning to attempt Kilimanjaro—like ME—it’s a good resource. Two stars.

La Vida Hemofilia: A Visit to Puerto Rico

I have a strong affection for Puerto Rico and its hemophilia community. I first visited in 1998 after speaking with a young mom, Yoli, who called me to ask about her out of pocket costs, which were extraordinary. The timing was good, as I was beginning to wonder about the state of care there. All our newsletters to the Puerto Rican hemophilia foundation were returned, and there was no phone. Yoli did a bit of investigating and learned the nonprofit had become defunct. With a little more discussion, she decided to revive the nonprofit, and the new Asociación Puertoriqueña de Hemofilia (APH) was born.

Yoli and her husband Rene worked hard to build the new association up from the dust. And they did a fabulous job. Soon they had money for camps, scholarships and travel. They upgraded the only factor product on the island to a more advanced product. Things were going very well!

Then Yoli left to come to the US (mainland, that is; Puerto Rico is part of the US as a possession). Another young parent and lawyer, Johnny Marquez, took over the helm a few years back. Like Yoli, he has a son with hemophilia. I had stepped back so far I kind of lost track of what was happening there, and decided that the dead of winter, with one of the snowiest winters in history, was a good time to make a social call.

Zoraida Rosado and I headed to San Juan on Wednesday, in between huge snowstorms in New England. Puerto Rico is often called the Shining Star of the Caribbean, renown for its pristine beaches and water, lovely climate and friendly people. While English is spoken, not everyone speaks it. I wondered if this created a barrier to hemophilia care since so much is available in English.

On Friday night we met socially with families and the executive team of the APH. Johnny and wife Tammie opened their home for everyone. We had a lovely time and Johnny filled us in on how things work in Puerto Rico.

First, there are about 180 people estimated to have hemophilia, and about 125 of these are registered. Though a small island, many people live far outside the capital, making it hard for them to come in to get care at the main hospitals. And despite being a US possession, medical care is definitely offered more like a socialist country. The government has a budget for factor, opens a “tender,” and pharmaceutical manufacturers offer bids on their products. Usually the government goes with the lowest bids per unit of factor. With a limited budget, the government typically selects plasma-derived products, as they are able to buy more product within the budget limits.

Just recently, a recombinant was selected. One of the moms I spoke with was a bit frustrated that she must go to the hospital each time her baby has a bleed. She is already to start to learn home infusion, but the hospital didn’t want to offer this. So she bought factor herself, out of pocket! I can’t imagine that happening on the mainland.

Overall, the children looked great, well cared for and very happy. We brought some of our books in Spanish, and hope to send more materials.

Insurance reform will also impact Puerto Rico, but how we just don’t know yet. I’ve invited Johnny to come to one of our Pulse on the Road seminars, so he can learn more and bring back information to our very warm and hospitable Latin friends on the beautiful island of Puerto Rico.

Thanks to Johnny and Tammie, and everyone who made our stay so pleasant!

Book I Just Read
The Imperial Cruise by James Bradley
In 1905 President Theodore Roosevelt sent a large political delegation, including Secretary of War William Taft, and his own daughter, the outspoken and rebellious Alice, on a cruise aboard the Manchuria to Japan, Korea and Hawaii to pave the way for better foreign relations. What was unknown to the public, and deliberately kept secret from Congress, thus breaking the Constitutional law, was that Taft and Teddy made secret alliances with the Japanese against Korean and China that left an open door to the Japanese to later invade these countries, and, Bradley postulates, lead to the attack on Pearl Harbor. The history he presents is not new, but Bradley makes much of TR’s racism, a topic most would like not to discuss. TR was just a product of his time, some might say. A fair point.

The topic of breaking the Constitution is excellent; Bradley’s depictions of what our country did to the Filipinos are searing; our military’s actions are unforgivable. You will be shocked if you have never heard this history before. He is to be applauded for reminding us that America has had (and still has) imperialistic motives. But the book is very hard to read, not because it is too scholarly or bogged down in minutia of history (it’s light on all that, if anything), but because of the vendetta Bradley apparently has against the Roosevelts. Bradley seriously damages his credibility as an author by using quotations grossly out of context and cherry-picking vignettes from TR’s life to paint a caricature of a man, instead of fairly raising the questions of his racism, nationalism and motives. He refers constantly to “Big Bill” (the 300+ pound Taft), “Princess” Alice and “Big Stick Teddy,” almost in a sneering, snarky way. Not just once, but over and over and over. You wonder when the editors checked out. Bradley also seems to have a vendetta against Christians; he correctly points out that Christian missionaries started the opium trade in China, making so many businessmen (and reverends) in America rich, but created a product Bradley refers to, again over and over and over, as “Jesus-opium.” And that’s only one example of his seemingly anti-Christian tirade. You find yourself wincing, and wishing Bradley would grow up a bit, as a man and as a writer. I felt that I was reading a weak term paper from a college student at times (too many times). He also jumps to historical conclusions, while missing key information in his theories and hypotheses. Most disappointing, coming from the author of Flags of Our Father, later a Clint Eastwood movie. Maybe, just as he repeatedly accused TR, Bradley has become slave to publicity, and needed to kick the readers’ hornet’s nest to get some media attention. He didn’t have to; the story of what happened in 1905 doesn’t need any flourish. It’s a sad chapter in our history. But there are probably better books to read on the subject than this one. Two stars.

Putting One of Our Own in the Senate

There was a welcome article when I picked up the Boston Globe this morning: “REMEMBER BOB Massie? The 1994 candidate for lieutenant governor doesn’t think so, and he’d like to reintroduce himself. “I’ve been away a long time,’’ he said in an interview.”

Of course we remember him. Son of Pulitzer Prize winning author Robert K. Massie, and author Suzanne Massie, who served as one of Ronald Regan’s advisors on Russia. They are most famous for the book Nicolas and Alexandra, the last Tsar and Tsaress of Russia who had a son with hemophilia. High powered parents, and an extraordinary childhood, all chronicled in the parents’ deeply stirring book Journey, arguably the first book ever on hemophilia. Many of us know Bob, and many of us just saw him at NHF in New Orleans. Yes, he has been away, with good reason. He no longer has hemophilia, thanks to a liver transplant in July 2009.

Bob has been through a lot. I saw him last January, when he donated all of his remaining factor to Project SHARE; with a new liver, he no longer has hemophilia and doesn’t need factor anymore. I visited him in his Cambridge home and got to meet one of his sons. I noticed all the photos of Bob with politicians: Bill and HIllary, Al Gore, and Ted Kennedy. His family has close political ties with many of our country’s top figures. And when we saw him in New Orleans in November, his transformation was remarkable. He looks fabulous, and obviously feels great. He is now a contender to unseat Republican Scott Brown in the Massachusetts Senatorial race in 2012.

Bob’s the first Democrat to publicly declare his candidacy. The Globe article notes: “Massie is certainly an unusual candidate. An ordained Episcopal priest with a PhD from Harvard Business School, he
is an award-winning author and social entrepreneur who also happens to be one of the longest-surviving HIV
patients on the planet.

“Is he a strong candidate? His ability to raise money and build an organization will tell…. he also knows he needs to get an early start on 2012, and is performing the necessary obeisance to political figures around the state. He formed a campaign committee, is establishing a depository account, and will have a website up shortly.”

For us, the hemophilia community, Bob could be a true godsend for health care reform. The Globe reports, “He believes
the American medical system (at least until the recent reforms) is a disgrace: tending to deny care to those who
need it most. ‘In addition to the burden of illness, people are being punished — there’s no other word for it — with
bankruptcy, misery, poverty,’ he said. ‘In my view that’s un-American.’

“…Massie has also deeply studied the health care system, its economics and history, from the inside out. At age 12 his family spent a year in France, where all his hemophilia drugs and treatments were covered ‘as a fundamental right of citizenship.’ Health care policy is not theoretical with him. Besides, Massie is no anti-business scold. He has worked with many of the world’s largest companies, including Sunoco and Ford, to develop the first standardized measures of corporate social responsibility.”

It will be interesting to see if Massachusetts, which stunned the nation when Scott Brown was elected, is ready to re-evaluate. Long considered a liberal state, and fertile ground for Democrat hopefuls, Brown overturned all the tables. Bob could represent a return to the roots of liberalism in Massachusetts. His candidacy can perhaps be a litmus test to see how Massachusetts is transforming. Was Brown a blip? We will wait and see. The idea of having someone who has suffered from hemophilia and hepatitis most of his life at Capital Hill could only be great for the hemophilia community, and perhaps for all who suffer from chronic disorders.

From “The timely return of Bob Massie”
By Renee Loth
January 16, 2011
Renee Loth’s column appears regularly in the Globe.
© Copyright 2011 Globe Newspaper Company.

Do you have what it takes to become a leader?

Author and leadership guru John Maxwell writes, “Whatever the question, the answer is leadership.”

Here’s a great program and a great opportunity for some qualified young people in the hemophilia community: a leadership-training program that pays. The Bayer Hemophilia Leadership Development Program is a unique opportunity to learn about hemophilia from an industry point-of-view by serving as an intern at Bayer, makers of Kogenate FS.

The internship is on location at headquarters in Wayne, New Jersey. Participants will be paid $15 an hour. During the internship, participants sharpen leadership skills in real-world scenarios that enrich the hemophilia community. Internship modules include:

▪ leadership training classes to develop presentation skills, learn about effective project management, and discover successful
time management techniques.
▪ a personal challenge project which allows interns to apply their new skills to design and create a project
▪ a visit to the Bayer manufacturing facility in Berkeley, California
▪ a meeting with healthcare public policy professionals to see how effective advocacy relations impact legislative decisions
• an exploration of marketing and communications strategies

This is an incredible opportunity. I know quite a few of past participants and they have all greatly enjoyed their experience, and learned a lot.

Applications are due by Monday, March 14, 2011. All applicants should be college students (sophomore through senior year), with a strong tie to hemophilia, and who demonstrate a commitment and interest in being a future leader in the hemophilia community.

Visit http://www.livingbeyondhemophilia.com/webapp/internships/forms-for-bayer-internships.jsp to learn more!

Charitable Thoughts

It’s a new year, and a time of resolutions. How about a resolution to be more charitable? So many I know think of donating time and not money, when for most organizations, nonprofits and the people they serve, money helps the most.

This story sure caught my eye:

In July, Violet and Allen Large of Lower Truro, Nova Scotia, won more than $11 million in a lottery. They have since spent every last penny—none on themselves. “What you’ve never had, you never miss,” said Violet, 78. The couple donated the money to a list of causes that included the local fire department, hospitals, and organizations that fight cancer, Alzheimer’s, and diabetes. Violet has been undergoing cancer treatments, which has underscored for the couple the limits of wealth. “The money that we won was nothing,” said Allen, 75. “We have each other.” The Week

There are so many causes in hemophilia worthy of a donation: your local chapter, a family in need (yes, we do have many families with hemophilia suffering here in the US). Make a donation in memory of a loved one or in honor of someone you admire to the World Federation of Hemophilia or the National Hemophilia Foundation. I was recently touched when I learned that the New York City Hemophilia Chapter made a donation to the Victory for Women campaign in my honor!

You can also sponsor a child with hemophilia in a developing country through Save One Life. Despite some tough economic times here, we still live like kings compared to an average day in their lives. Visit www.SaveOneLife.net to see some children in need.

And remember the great words of Winston Churchill: We make a living by what we get, we make a life by what we give. Let’s make 2011 a year of giving.

Great Book I Just Read
Deliverance by James Dickey
I had to read this after writer Pat Conroy noted it as one of his top five favorite books. I had seen the excellent movie, which contains one of those lines that has gone down in movie history. The book, my second on a Kindle, is excellent, too. Terse, exciting, horrifying, it pits man against the elements, man against society and man against himself. Everything balanced becomes unbalanced as four city slickers take a canoe for a weekend down the last great river of Missouri before it gets dammed. They encounter much more than they ever thought, leading to questions of justice, revenge, poverty, retribution, evil and survival. Three stars.

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