March 2010

National Healthcare Reform: The Aftermath

On Tuesday, March 22, President Obama signed into law H.R. 3590, The Patient Protection and Affordable Care Act, representing the biggest change to the US healthcare system since Medicaid was introduced in 1965. But it’s not over yet. Many are unhappy with the final bill, and vow to protest it. The mood has turned ugly in many parts of America, as some think the bill will create a crushing financial burden on our future, and our children’s future, or was arm-twisted through the Senate and lacks any kind of bipartisanship, or even some think brings us ever closer to socialism. The victors are proud of their achievement, that despite the opposition, the bill was passed and a new era of healthcare begins.

For those of us with hemophilia or VWD, the bill provides the changes we have been advocating for years:

• Eliminates lifetime caps in new and existing health insurance plans six months after enactment of the bill
• Eliminates rescissions in all health insurance plans 6 months after enactment
• Extends coverage for dependents, to stay on a parent or guardian’s insurance plan until age 26, six months after enactment
• Restricts annual caps in new plans before 2014, and then eliminate them in all new plans and existing group plans in 2014.
• Eliminates pre-existing conditions exclusions for children in new plans 6 months after enactment, and for all people in all plans in 2014

If the bill is not challenged or changed, our children will not face discrimination due to their disorder. They will be able to be insured.

There are serious attempts to change the bill. So we will all need to read and watch to see whether those attempts are successful in changing the bill as it stands. Many of the changes, should they stay, will not go into effect immediately; some, not even for years. Continue to read about healthcare insurance issues to know what is changing, what isn’t changing, and how this impacts bleeding disorders and you in particular.

And everyone has a right to be concerned about not just healthcare but our nation’s financial health. Try to read up on the facts about national debt, macroeconomics and how the Act will be funded. It’s extremely complicated, and not done justice with sound bites from TV or radio personalities. Will our children instead face greater out-of-pocket costs now? No one knows for sure how this will all play out. Keep reading, debating and forever watching your insurance policy. Now is not the time to get complacent, even though it seems our dream of better insurance for our children is here.

Interesting Book I Just Read
The Tipping Point by Malcolm Gladwell

Gladwell looks at the phenomenon of how some ideas and products take consumers by storm, while others fade away. Even when small numbers of people start behaving differently, as in accepting fads or new trends, their behavior can ripple outward until a critical mass or “tipping point” is impacted… which can change history. He coins three types of people who help create this ripple effect. He hops from examples as random as Hush Puppies shoes and even the drop in violent crime in New York, and teenage suicide. Gladwell seems to be tying together a theory, but the whole book feels as though it’s trying much too hard to impress, much too hard to prove this theory. It’s not science and it’s not good sociology. In fact, I think Gladwell himself is just trying to create a ripple and hoping it goes viral! This book was on the beset seller list, but I wasn’t so impressed. It’s interesting, worth a read, but it’s kind of sociology-lite. Two stars.

Is Tonight the Night for Health Care Reform?

This could be an historic night, and certainly a polarizing one across America. Why not just refer to the wonderful Friday Update email I get every Friday from Kisa Carter at HFA? On Friday she wrote:

“The House is expected to vote on an amended version of the Senate Bill on Sunday. If passed, the bill will enact the Senate version of the health care reform bill with the House bill changes. The President and Speaker of the House Nancy Pelosi have spent the week discussing the bill and seem confident that the bill will be brought to the House floor for a vote in the next 72 hours. A section by section analysis of the changes made in the reconciliation bill can be found at:”

CNN reports active debate happening even as I write: at 8:58 p.m. “Democratic Rep. Tim Bishop of New York said that “amidst angry and at times even hateful rhetoric, amidst the misinformation and scare tactics, there exists one simple truth, and that truth is that the current system is unsustainable.” And Republican Rep. Tom Price, a doctor from Georgia, said health care is a “moral endeavor and should be grounded in principle. This is a sad day, yes, because there are so many wonderful and positive and patient-centered solutions that could be enacted.” Earlier, in an impassioned speech, Rep. John Lewis, D-Georgia, urged his colleagues to pass the bill.

Tomorrow morning should have big news for us in the bleeding disorders community. One good news is that in the current bill the House voted to eliminate lifetime limits on all plans, effective six months after the bill passes, Kisa says. She adds, “Annual limits will be eliminated by 2014 and have restrictions on annual limits until then. This is great news for the bleeding disorders community. Below are a few links to the Congressional Budget office’s reports on the latest version of the House bill.”

This has been a gut-wrenching year for everyone, as the nation tries to enact health care reform but digs in its heels on different principles regarding how to do it. For us, even if the only thing that changed were that lifetime limits were eliminated, it would be a victory.

(Please sign up for Kisa’s Friday Update by visiting

Safety versus Science: Do We Allow Blood Donations by Gay Males?

Remember the 1980s? For those with hemophilia, we remember fear, lack of understanding, being labeled part of the “Four-H Club”: the groups who seemed to get AIDS most predominantly were heroin users, homosexuals, hemophiliacs and Haitians. Fast forward to the Millennium and one group still seems to be held under a microscope: homosexuals. A lifetime ban was placed on homosexuals in 1983 due to the spread of AIDS through blood donations. Homosexuals were social activists and quite altruistic. They often donated blood. Before HIV was identified, their donations contributed to the spread of HIV to those with hemophilia.

So why are they still banned from donating blood? Is there a scientific or medical reason–or just plain discrimination?

Apparently 18 senators think it’s discrimination. A letter signed by all was sent to the Food and Drug Administration (FDA) last week, requesting the FDA to modify its policies on donors. They asked the FDA for the same deferral policies for heterosexuals engaged in high-risk behavior–usually a 12 month waiting period. In plain language: if you are a gay or bisexual man, you could donate blood if you have not had sex with a man in the past 12 months.

What do the nation’s blood bank organizations have to say about that? They’ve been open to changing policy since 2006. The AABB, America’s Blood Centers and American Red Cross all support a 12 month deferral. And the CDC says transmission of HIV through blood donations are extremely rare – less than 1% of all new HIV infections.

But Mark Skinner, president of the World Federation of Hemophilia, cautions that the focus should be on the safety of the recipient, not the altruistic needs of the donor. Blood-donor rules are discriminatory by design, Skinner says in the Washington Times. He noted that people with hemophilia can’t give blood, so it’s not about discrimination; it’s about scientific vigilance.

The FDA reports that homosexual males have an HIV prevalence 60 times higher than the general population, 800 times higher than first-time blood donors, and 8,000 times higher than repeat blood donors.

In a statement released February 19, the WFH stated that donation policy must be based on the Precautionary Principle, which asks that in the absence of scientific consensus, decisions must err on the side of caution. Here, not to cause any unnecessary risk to recipients of blood donations.

This is a fascinating discussion about safety and science, and one that has not ended yet. Surely it is difficult to be a gay male and not to be allowed to donate blood, which is a highly altruistic and socially conscious act. But due to our history, the hemophilia community may defeat efforts to change the current blood donation policies.

For more info, see: Washington Times – Senators ask FDA to lift gay blood donor ban[3/6/2010 10:50:41 PM]

Spotlight on Inhibitors: Novo Nordisk CEO Visits US

Last week I had the unique pleasure to meet, along with three other community patient representatives, the CEO of Novo Nordisk, Lars Rebien Sørensen, in the Princeton, New Jersey offices of Novo Nordisk US. To my knowledge, this is the first time he has met with patients from the American hemophilia community. Novo Nordisk is a leader in diabetes therapies, and also the only provider of recombinant factor VIIa for the treatment of inhibitors in hemophilia.

(Photo, left to right: Eddie Williams, Ashley, Schlander, Jurek Gruhn, Laurie Kelley, Mike O’Connor, Lars Sørensen)

With me were Mike O’Connor, chair of NHF and former person with hemophilia—Mike is one of only a handful of people cured of hemophilia through a liver transplant. I’ve known Mike for many years. Also attending were Schlander and Ashley, two great ladies who both served with me on the Novo Nordisk Consumer Council.

From the Novo Nordisk side, we also had quite a few attending, including Jurek Gruhn, President, and Eddie Williams, Vice President, Novo Nordisk US.

So we had a nice reunion as colleagues and friends, and then sat down to a working lunch.

I had learned a few things about Lars before meeting him, such as his passion for cycling. He competes in the Death Valley biking race each year, which sounds terrifying. I’ve read about the infamous ultramarathoner Dean Karnazes and his running Death Valley–his sneakers literally melt on the tar in the 120 degree heat so he runs on the white strips on the highway, in a white reflective space suit to deflect the heat. Hard core athletes. I had just bought my first racing bike two years ago, and we chatted about biking, though I admit I am a bit intimidated by its engineering, and after taking a spill on a major road.

After introductions, I offered some statements from inhibitor families who wrote in a few days before to express comments directly to Lars:

Doris wrote: “Thanks to NovoSeven, my husband was able to have successful hip replacement surgery last September 1. Not in his wildest dreams would he have ever imagined that he would be able to have surgery and live through it. We just want to thank you for developing this wonderful product.”

Karen wrote: “What would I say to the CEO of Novo Nordisk, Lars Sørenson? Well, first and most importantly, I would say thank you from the bottom of my heart. Our son, Michael, now 17, wouldn’t be here without NovoSeven.” And John wrote, “You might tell Mr. Sørensen how grateful our family is for the $2,500 scholarship our son received from his company this year. When you have a bleeding disorder and are used to physical trials and disappointments, receiving a scholarship is a huge lift.”

Some also wrote and asked about the high cost of the product. We had a discussion about healthcare reform, as Mike was just back from NHF’s Washington Days, where 350 of our community attended. Mike reported that the discussion was all about eliminating lifetime caps and pre-existing condition discrimination. With no caps, of course, cost of product would not be such a problem for so many.

Lars and his executive team listened intently, especially about the daily realities of living with inhibitors, which Ashley shared. Infusing every two hours, as prescribed, is very disruptive. He shared a slide that showed new Novo Nordisk products in the pipeline, and one of these is a long acting version of NovoSeven. (See also our latest issue of PEN which details all the new products being explored:

We wish to thank Lars Sørenson and his team at Novo Nordisk for the privilege of meeting, and applaud his spending time with members of the community, to hear about their needs.

Of our meeting, Lars and his team writes:

We had the privilege last week to meet with members of the US hemophilia community. For those who follow Laurie’s blog regularly, you probably know a bit about this meeting. Novo Nordisk is listening….listening to the wishes, needs, concerns and challenges of people who take our medicines and their loved ones, the physicians who care for them, advocacy groups who drive for change, policymakers who govern how care is delivered, and our employees who make it possible for us to do what we do. We are doing this because we want to be a better company— a better healthcare partner.

It was a very enlightening discussion with Laurie, Michael O’Connor, chair of NHF; Ashley, a mom of two young boys with hemophilia and inhibitors; and Schlander, a woman who cares for her older brother with hemophilia and inhibitors. We were very moved by the discussion, and reminded why it is so important to stay connected to those we serve. Our only regret was that we couldn’t meet personally with more of you. But thanks to Laurie and her network, we did hear from many of you. Laurie shared letters from several of you and the “wish lists” you provided. We know that the challenges and decisions you face are extraordinary and even overwhelming at times. We heard you. You have our promise to strengthen our commitment to you and do our best to expand it where we can.

Sincere thanks and warm regards,

Lars Rebien Sorensen, CEO and President, Novo Nordisk A/S
Jurek Gruhn, President, Novo Nordisk US
Eddie Williams, Vice President, BioPharmaceuticals, Novo Nordisk US

Great Book I Just Read
Ada Blackjack: A True Story of Survival in the Arctic by Jennifer Niven

Another polar survival story (I have a huge collection) and this one is brilliant. But I’m a fan of Niven’s anyway. We pick up after the disastrous Karluk expedition of 1913. Explorer and unethical, shameless self-promoter Vilhjalmur Stefansson is planning a new attention-getting scheme in 1921: to sail to, explore and claim Wrangle Island for Canada. He lures four men into his service (two who have never stepped foot in the Arctic!), with nebulous contracts, inadequate provisions, sickly sled dogs and one impoverished, 23-year-old Eskimo woman named Ada Blackjack, to serve for a year on Wrangle Island. The young men are starry-eyed and eager to make their names; Ada simply wants to earn enough to help get her five year old son treatment for his tuberculosis.

Despite Stefansson’s assurances of plentiful game, the uninhabited island is almost barren. When winter sets in, they are tested as never before in their lives. And Stefansson, who didn’t even go, simply puts them out of his mind as he continues to do speeches and scheme new schemes. Eventually starving, three of the men head out to get help, leaving one behind seriously ill with scurvy, and Ada. The story of how she fended for herself should give anyone courage; she survives, but only to face a media circus surrounding the events of her two-year stay. She is hunted, harassed and used. The aftermath of the trip is as amazing as the survival story itself. Survival of a different kind, from the blood-thirsty public and money-hungry rescue operators. This is an inspiring story of a dignified woman who survives horrific circumstances, and is immortalized forever by Niven. And rightly so. Three stars.

International Updates

An 8.8 earthquake rocked Chile this weekend–a second major earthquake in a developing country in only 6 weeks. So many people asked about those with hemophilia in Haiti, that I’d like to reassure everyone that Chile has a very good hemophilia health care system, and those with hemophilia should be well cared for, even following the quake.

And I have good news about Haiti: we learned that one boy we know there, who has factor VIII deficiency and whom we have helped before is okay, and we are sending more factor to him. This summer I hope to visit Haiti to get a patient registry started, to learn where hemophilia patients are and how many there are. Following the earthquake, so many NGOs are teaming together to bring help, that I will piggyback off some groups already established there, who have pledged to help us.

This past week I was in New York City (yes, during that terrible storm!) and visited the ambassador to the United Nations from Zimbabwe, His Excellency Boniface Chidyausiku. This is the UN dignitary who helped us speed up Elton’s visa approval one year ago, so Elton could come to the US for emergency surgery at RUSH Hospital in Chicago. It was a wonderful meeting, and we reminisced about visits to the beautiful country of Zimbabwe and the people we both know in health care there. Accompanying me was Juliet Hanlon, UN Goodwill Ambassador and recording artist, who made this meeting possible.

There are good things happening internationally, despite the often sad news of political unrest or natural disasters. Even if it’s a story of one boy from Zimbabwe or Haiti, it’s enough to keep hope alive.

Good Book I Just Read
The Secret by Rhonda Byrne

I was given this book over a year ago and finally read it, in two nights. A little gem! There’s nothing new presented here that Napoleon Hill didn’t already present previously in his landmark Think and Grow Rich or that Wayne Dyer hasn’t presented for 20 years now in his books and on public television. But this sure is marketed and packaged in a way that makes you savor it. The book is about the Law of Attraction, and how the universe will provide if you make your intentions and desires clear and visualized. Mankind has known about this Law for eons, and I’ve read many books on the subject, but I really enjoyed how this one was set up and presented. It gets a bit hokey a few times, and I didn’t like the heavy marketing of the DVD, but overall, a light read, one that will make you feel wonderful and I do believe it works! I’ve used it myself with success. Three stars.

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