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Sunday Night at the Movies

Laurie Kelley August 16, 2010

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

Laurie Kelley August 9, 2010

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

Laurie Kelley August 2, 2010

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 www.healthcare.gov 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!)

Vacation in Wyoming

Laurie Kelley July 26, 2010

I’m on vacation this week in Jackson, Wyoming, one of the most beautiful spots in America; a real slice of the Wild West! I’ll be back next Sunday night!

World News!

Laurie Kelley July 19, 2010

The World Federation of Hemophilia Congress was a wonderful time, and very informative. Representatives from all over the world came to Buenos Aires, Argentina, all last week, to share news, present studies and network.

One of the most talked about subjects was not gene therapy, but longer acting factor. As we mentioned in the February issue of PEN (https://www.kelleycom.com/newsletter.html) it looks like extended half-life factor will be next on the horizon for new products. Of all the companies presenting, Biogen Idec perhaps stole the show. The company reported positive results from a Phase I/IIa safety and pharmacokinetic study of its recombinant factor IX protein, called “rFIXFc,” in hemophilia B patients. The primary objective of the study was to assess safety, and the product was well tolerated (albeit in a single-dose) with no signs of inhibitor development or antibodies.

Chief medical officer of hemophilia products at Biogen Idec, is none other than Glenn Pierce, twice president of the National Hemophilia Foundation. As president of NHF a long time ago, Glenn pushed hard for gene therapy and was hopeful that it would be found in ten years, and then dampened that hope to in our lifetime. For now, it seems we may have found the next best thing: long acting factor.

The Congress gave me a chance to meet with a variety of colleagues from around the world, including those from Pakistan, Honduras, Tanzania, Ghana, India, Belize and New Zealand, just to name a few! Nice break for me: instead of traveling to meet them all in their countries over several years, I was able to meet with them all in one week!

Great Book I Just Read
The Man Who Tried to Save the World by Scott Anderson

This book gets better each time I read it. The enthralling story of larger-than-life Texan Fred Cuny, the “Master of Disaster,” who disappeared in Chechnya in 1995. Anderson actually travels there during wartime (dubbed one of the scariest places on earth) to learn what happened to Cuny. Cuny was a visionary, who turned the international disaster relief world on its head with his revolutionary–and effective–ways of approaching disaster relief. Largely self-taught, his compassion, passion and “bedrock practicality” led him to devise better and cheaper ways to save lives–not always a welcome thing to the comfy and bloated big international nonprofits. He was drawn to danger and this book reads like a spy thriller and a fascinating biography of a fascinating American. He is a true American hero. Harrison Ford bought the rights to the movie in 2002: come on Ford, where is the movie? Three stars.