August 2010

Health Care Reform: Pulse On The Road

Making sense of insurance reform was the theme Saturday morning at the launch of our new program, “Pulse On The Road,” at the Indiana Hemophilia Foundation’s annual meeting. (Photo: HFI Executive Director Andrew Van Gordon)

With funding from Baxter BioScience, we brought expert speakers from several states to present stories, scenarios and solutions to an audience of 100 families. The idea is to bring to life our newsletter Pulse, which you can download here.

We started off the morning with Martin Addie, a man with hemophilia from Missouri, who shared his many trials trying to get health insurance. Martin had called me last year, asking for suggestions, and I learned that he is one person who did everything right, tapped every resource, documented everything, and yet he still could not get help with his dwindling insurance. You can read about his entire story in Pulse, but I can tell you the audience was struck by his determination and even more by his faith.

Next was Andy Matthews, a long time friend of mine. In the 16 years I’ve known Andy, I’ve actually never heard him speak and never knew he was such a motivational speaker. He focused on teens transitioning into adults, and what we can do as parents to encourage them to take control of their insurance and health.

Then came former executive director of HFI Michelle Rice, how gave a great overview of health care reform, along with dates when certain parts will be enacted. This was then followed by our “Community Forum,” with four panelists: Michelle Rice, now a regional director with NHF; Kisa Carter, Public Policy Director, HFA; Mike Bradley, Vice President, Healthcare Economics and Reimbursement, Baxter BioScience; and Judy Moore, social worker with Indiana Hemophilia and Thrombosis Center.

There was no shortage of questions posed to the panelists and the Q&A went for 50 minutes, and could have gone longer. Audience members wanted to know why we have to wait till 2014 for implementation of some parts of the healthcare reform bill; where can they go for more answers; will out-of pocket costs rise? All great questions.

After lunch we had a Meet the Expert table where folks could come and speak one-to-one with the panelists and speakers.

Next stop? Washington DC October 23, where we will present Pulse On The Road at the Hemophilia of the Capital Area’s annual meeting. Then look for POTR next year, perhaps coming to your state! In the meantime, keep reading about insurance and healthcare reform. Visit and for up-to-date information from your national hemophilia organizations.

Thanks to Baxter BioScience for funding this event, which received excellent reviews from the attendees! (Photo: Laurie and Kisa; Laurie with Carlita and Vanessa)

(Professional photos by Markey’s Rental and Staging)

Interesting Book I Just Read
The Time Traveler’s Wife
Audrey Niffenegger
This book was a gift from a friend, who thinks I time traveling when I jaunt off to developing countries. A sci-fi book that reads like a romance novel, about a man who can time travel (no explanation given) back to his own past, and even meets himself as a boy. More importantly, he meets his future wife when she is just a little girl. The story is compelling, and I confess I read all 500 words on a train ride to London, then on a 7 hour plane ride home. I couldn’t put it down! The writing style is very light, rather dry (but then, I had just finished Lord Jim by Joseph Conrad; gorgeous writing). This is like English fast food: yummy, filling, but not going to nourish your writing abilities or appreciation of the written English language. Still, there is a lot to say for fast food, especially when you tire of full course meals that you must digest slowly (like Conrad). A book about love, loss and patience; worth reading for relaxation. Two stars.

From Diabetes to Hemophilia

Novo Nordisk is best known throughout the world as the leading manufacturers of insulin to treat diabetes; in the hemophilia community, it is best known for NovoSeven®RT, an inhibitor bypassing agent, a miracle drug to many. (Photo: with Lars Sørensen and Stephanie Seremetis)

I visited Novo Nordisk’s headquarters in Copenhagen, Denmark on Friday, to speak with CEO Lars Rebien Sørensen, arguably the most famous businessman in Denmark. The country is very small, about the size of my home state Massachusetts, and Novo Nordisk is its biggest company. Denmark is very pretty, a haven and heaven for cyclists, as everyone seems to bicycle everywhere. It doesn’t take long to get to Novo Nordisk from my hotel; indeed, it wouldn’t take long to get anywhere in this diminutive and charming country.

I am struck by how understated Novo Nordisk is. The buildings, designs, interiors are all minimalist, low key, humble even. Entering the executive suites, I am surprised to see that no one has offices per se; just desks, no walls, no glass, only hip-high borders to segregate one work area from another. Quite the opposite of the US and most other places, where executives usually prefer to have corner offices with glass, big cherry furniture, and doors for privacy. Here, everything is open, transparent.

Lars Sørensen came to the US in March (see to meet for the first time the key opinion leaders in the hemophilia community, and to also meet some patients. This meeting now was to follow up on points we touched upon, including products in the pipeline and the company’s policies for international humanitarian donations of product.

I first had lunch with Lise Kingo, executive vice president, Corporate Relations, and Charlotte Ersbøll, corporate vice president, who graciously filled me in on their programs. Next, a meeting with Charlotte and Trine Thomsen; Trine is heading the HERO project, a massive multicounty research that will attempt to quantify and publish responses about the psychosocial aspects of life with hemophilia. (Watch our blog for more news about this)

Last, a meeting with Lars and Dr. Stephanie Seremetis, formerly with a New York HTC. I had heard of Stephanie for so many years and each of us couldn’t quite believe we had never yet met! Lars is an energetic and welcoming executive, and we spoke for an hour about:

1. New products. We spelled out some of Novo Nordisk’s new products in research in the February issue of PEN: long-acting FVIIa; recombinant FVIII (to take on Advate and now Xyntha); a long-acting rFIX product; and a FXIII (13) product. We spoke about causes of inhibitors, patients’ personal experiences and what physicians are requesting (nonimmunogenic factor VIII—in other words, factor that does not cause inhibitors, although it’s not clear yet if how and why factor causes inhibitors)

2. Hemophilia in developing countries. One of my passions is to increase product donations to developing countries, and Novo Nordisk as of yet is not a big donor—although they donate a lot of product in the US, its main market. One problem is production itself: a specialty product for such a rare complication of such a rare disorder means not a whole lot of product sits on the shelf anywhere in the world. In other words, there isn’t much to donate. At Project SHARE we are over the moon when a rare donation of NovoSeven reaches us from some patient, HTC or homecare company, and usually it’s only a few boxes. It will be a while before donations become a routine thing and for now we will be dependent on third parties who donate NovoSeven to us. Novo Nordisk supports Project SHARE’s operating expenses, as do quite a few other pharmaceutical companies and others, and for this we are glad, but we look forward to the day when we and others can also expect product donations.

One interesting insight is Novo Nordisk’s take on product donations. As you can imagine, donating tons of products (just like doling out money to charities without expectation of anything in return) into a poor country can lead to dependency, which only perpetuates a bad situation; this is a constant threat to donations of anything in the humanitarian field. Lars explained that right now, the Novo Nordisk diabetes model has been extremely successful throughout the developing world, and perhaps this is the model to be followed in the future with hemophilia, when emerging markets like India and China start to purchase products. In diabetes, Novo Nordisk’s biggest single financial commitment is its annual donation to the World Diabetes Foundation. At the company’s Annual General Meeting in 2002, the shareholders made an agreement obliging the company over a 10-year period to make an annual donation of 0.25% of the net insulin sales for the preceding financial year (not to exceed approximately $12 million or 15% of taxable income).

In diabetes, the company’s donation policy is tied to product sales: higher sales mean a higher donation to the World Diabetes Foundation, and you can see where this would make good business sense. Also, clinics get established in this model; I saw some of these while traveling in Africa this year. Novo Nordisk is big in Africa, and does a lot to help those with diabetes.

In hemophilia, Novo Nordisk donates about $3 million to the Novo Nordisk Haemophiia Foundation (NNHF). NNHF supports sustainable local and regional projects as well as the advancement of relations between healthcare professionals, patient associations and authorities within the hemophilia community.

In hemophilia, a model like the diabetes model will take a long time to develop. But there are signs: patients in developing countries are integrating and speaking up like never before, thanks to information’s and resource exchange on the internet, and entities like the World Federation of Hemophilia, which brings patients, physicians and nonprofits together to learn and network, and to institute programs that train medical staff. Even at Project SHARE we sometimes, often, dangle product donations like a carrot to get patients organized and to take action. It works, no doubt. But people are still dying, weekly, and we will always need to donate life-saving products with no strings attached sometimes.

Hemophilia is a rare disorder, an expensive one, and we are a small community. Changing the current situation in poor countries will take a long time, and I plan to stick around for as long as humanly possible to ensure that change happens. Just so happens that Novo Nordisk’s slogan is “Changing Possibilities in Haemophilia®” and that needs to be believed no where more importantly than in hemophilia, by the patients, governments, humanitarians and very companies that provide the product. (Photo: Hartnell of Jamaica, who died of inhibitor complications in August 2009 at age 20)

Thanks to Lars and his team for welcoming me, for partnering with us, for sharing so much of their time and ideas. Let’s count on changing possibilities in the near future and make some dreams come true for those patients in countries where no treatment is available now.

Great Book I Just Read
Lord Jim
By Joseph Conrad
This classic was the basis for the movie “Apocalypse Now.” A young sailor, Jim, runs from his past by taking job after mundane job in far ports in the 1800s. He had served as first mate on the Patna, a ship carrying 800 Muslim pilgrims, which hit something in the dark waters one night during his watch and threatened to sink. Jim and the rest of the crew abandoned ship, thinking there is no hope of saving the passengers. The ship does not sink, and when Jim and the crew are rescued, their reputations are ruined. This story within a story is narrated by Marlow, an old sailor, who is fascinated by Jim, and spends the rest of his life trying to help the young man find redemption. Eventually Jim is offered a job to run a trading post in the far reaches of Southeast Asia, so remote few white people have ever visited. Eventually, his leadership and good deeds earns him the title “Lord Jim,” and he is beloved by the people. Soon his honor and character are tested as never before, earning him a last chance at redemption. The writing is amazing, the structure complex, superb, but difficult: some paragraphs are three pages long, and the story within a story can be confusing at times (think of the movie “Inception”!), but a great read; not to be missed. Four stars.

Sunday Night at the Movies

Movies are on my mind for two reasons: 1) we finally broke down and bought a real TV (no one in our house has watched TV or movies in months, possibly years, since we cancelled cable and then our TV died, and 2) I was privileged to watch the new documentary “Bad Blood,” by director Marilyn Ness. This movie debuted July 28 in New York City, and I was invited and couldn’t attend due to travel. You can watch the trailer on YouTube. It’s about history, our history, the history of hemophilia, AIDS and hepatitis C. I want to blog about what I saw, but…. you’ll just have to wait for the review to come out in PEN in November!

Instead, let me offer you another movie about hemophilia history: “Nicholas and Alexandra.” Made in 1971, based on the Pulitzer Prize winning book by Robert K. Massie, who is the father of Bob Massie, who was in the film “Bad Blood,” it’s the story of the most famous historical figure with hemophilia: Prince Alexis, heir to the Russian throne.

Massie boldly hypothesized that hemophilia was influential is causing the Russian Revolution of 1917, in which the Communist came to power, as the royal family was preoccupied with their only son’s suffering from untreated bleeds. Enter the evil, mad monk Rasputin, one of history’s most easily recognized figures, who was able to hypnotize the boy and calm him, and gain control over the affairs of state, and you have a true story that is almost too unbelievable to be true. And it starts as a beautiful love story between the royals. I loved the book, but the movie deserves praise too.

Directed by Franklin J. Schaffner (known for “Planet of the Apes” and “Papillon”), it was nominated for Best Picture, and is sumptuous in its costumes, settings and scenes. The acting is superb. There are heart-wrenching moments watching the parents agonize over the pain their son suffers. You’ll learn about Russia, history, hemophilia and human nature. The film ends abruptly and brutally in August 1917, as the story of the Romanovs did, in real life.

Rent it on Netflix this week, or buy it on eBay. It’s worth having; if your child has hemophilia, be sure they watch this to know the importance their disorder made to the world. World War I changed the entire world forever, and so perhaps, did hemophilia.

Great Book I Just Read

The Turn of the Screw by Henry James
And speaking of classics, I read Henry James’s The Turn of the Screw in one night. A psychological thriller, beautifully written, and it always keeps you guessing. This is one book meant for a book club. In the nineteenth century England, a governess is sent to live in a huge, remote mansion, to tend to a young brother and sister who have no mother. She soon believes that the former caretaker, Peter Quint, has returned from the grave to possess the children’s souls… or is she only imagining the apparitions, the noise, the children’s own secret glances and whisperings, as though they were in on the scheme? Cleverly written, there appears no right or wrong answer, despite the happenings and events, or is there? Enjoy a spooky night at home with this book, also made into an excellent movie by the name of “The Innocents.” Four stars.

The Bloody Ban

According to the CDC, 4.9 million Americans require a transfusion of blood or blood products daily. Is our blood supply safe enough to infuse into them?

That’s the debate raging right now. At issue? Whether gay men can be allowed to donate blood. The FDA has a policy that men who have had sex with another man (MSM), even once, since 1977 are deferred indefinitely from donating blood. On June 11, an advisory committee to the Department of Health and Human Services, composed of health experts from around the country, voted 9-6 to maintain that bans. Is this fair, unfair, discriminatory, accurate?

Mark Skinner, president of the World Federation of Hemophilia, and a lawyer, believes the ban should be upheld. He writes in an article in US News & World Report (posted July 26, 2010), “Recent CDC data indicate that while U.S. HIV infection rates are falling in heterosexuals and intravenous drug users, they are rising among men who have sex with other men and are 44 times that of other men. Additionally, other pathogens that might also be transmitted through high-risk sexual behavior are not fully understood.” Mark stresses that the safety of a recipient of a blood donation comes first. Looking at the scientific data only, the rise in HIV rates and their pattern, the ban should stay for now.

Alternatively, some believe the ban is unfair, needless and discriminatory. Representative Mike Quigley, Democrat from Illinois who sits on the House Committee on Oversight and Government Reform, voices this concern in a counter piece to Mark’s. The ban was put into place during the HIV contamination of the nation’s blood supply in the 1980s. Yet, a man who has had sex with an HIV-positive woman can donate after waiting a year. Fair? Quigley is concerned that there is not enough blood to be donated, and that the gay community represents a willing source of blood donations. Quigley wants a way to separate the high risk gay donors from the low risk, so that at least some in the community can participate.

Not good enough for Mark Skinner, who puts the focus on the recipient’s safety. But he bridges the debate by adding, “While many perceive a disconnect between leading gay rights and end-user patient organizations, these groups have more in common than recent discourse reflects. Both have been disproportionately impacted by the HIV epidemic and for most of the past quarter-century have worked toward shared goals including preventing the virus’s spread. Both share a strong commitment to a safe national blood supply.”

There’s no right or wrong answer at this point, but you can read more about this by Googling “blood donor ban.” If anything, it’s a great exercise in tolerance, science, altruism and politics. I wonder if anyone has interviewed the recipients about how they feel?

Great Book I Just Read
Undaunted Courage by Stphen E. Ambrose

Christopher Columbus may have put America on the map, but Meriweather Lewis put a map to America. One of the great adventure stories of all time, the amount of courage needed by this 30 year old, setting out to discover what lay beyond the Mississippi River, was immense. A close confident of Thomas Jefferson, who had unbridled expansionist plans, he set out in 1803 to find the fabled water passage to the Pacific Ocean. There was none, but Lewis (and Clark!) had an adventure like no other. From Philadelphia to St. Louis through Idaho and eventually Oregon in two years, they charted and mapped the US under the most primitive of circumstances, and discovered new species of plants and wildlife. They met and negotiated with the Indians, the most terrifying of which were the Sioux. A great study in leadership and courage, it has a sad outcome for Lewis in the years following his celebrity status. An amazing American hero. Four stars.

Trouble with Teens and Insurance

This weekend I attended the Arizona Association’s fifth annual family meeting, which had great guest speakers and huge turnout. I always love to visit Arizona, my second favorite state (thought Wyoming must come in a close third, as almost nothing can compare to the splendor and wonder of Yellowstone National Park).

The focus was on two things: transitioning teens, and insurance. The audience and I were riveted to speaker Jeff Leiken, who delved into the world of teenage boys and the lack of motivation, growth and development; their sense of hopelessness and addiction to video games. Bold subject, but backed by research: video gaming is altering the moods and even the wiring of our kids’ brains. Jeff pointed out how life is passing our kids by, how much they are missing by isolating themselves from others and socializing purely through the computer. Not healthy. And as we adults indulge our kids, we keep them from interacting with other adults, where they can explore possible mentors on which to model their lives. Jeff encouraged us to ask our teens tough questions: who are their role models for leadership—Kobe Bryant or Nelson Mandela? Guys who own stuff or guys who change the world? What movies do you watch: how do you feel afterwards? Which movies inspire you?

The talk was so good that parents congregated in the hallways afterwards, sharing concerns about their own children. And we didn’t even touch upon hemophilia!

On Sunday, there was a three-hour insurance symposium. I spoke about the history of our current insurance challenges: when did this all start, how does hemophilia fit in and what do parents need to know from history? Mike Bradley, Vice President, Healthcare Economics and Reimbursement at Baxter BioScience, spoke about current health care reform, specifically the Patient Protection and Affordable Care Act. Mike pointed out the many components of the plan, and stressed the positive aspects of not having lifetime limits or preexisting condition clauses. But he also reminded us that the “devil is in the details,” and many details remain to be settled. He left us with a list of resources to check, including: your employer’s Human Resources Department, current insurance company, specialty pharmacy provider, the Bleeding Disorders Legal Hotline (800-520-6154), and HTC Social Worker, if you have one.
(Photos: Cindy Komar, Kisa Carter, Mike Bradley, Laurie Kelley; Michelle of HFA with a great giveaway!)

And visit for a good explanation of the new legislation.

Last speaker was Kisa Carter, director of Public Policy for Hemophilia Federation of America (HFA). Kisa stressed how parents and patients can get more involved on many levels in supporting their state to advocate to protect access to health care. One thing we worry about is the backlash from the current legislation: will premiums rise? Will out of pocket expenses increase? These are the things we must protect against.

Congratulations to Cindy Komar and her board of directors for a well planned event, with attentive families and great logistics. It’s a pleasure to visit Arizona, and this Association. (Photos to follow after I get home!)

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