NHF

See you in New Orleans!

Laurie Kelley November 8, 2010


I am looking forward to arriving in New Orleans this week, to attend NHF’s 62nd annual meeting. I haven’t missed one in well over 15 years. There should be lots to talk about, with the new Health Care Reform bill passed this year, and the showing of the new documentary “Bad Blood.”

I’ll be facilitating a great symposium on Saturday morning, called “Build Your Tomorrow Today,” hosted by Baxter BioScience. The topic is a good one for anyone with a transitioning person with a bleeding disorder such as a teen, college kid, or even an adult who is looking for a new line of work. We will have two expert speakers: Art Wood of PSI, who will address the insurance issues that come with new phases of life. And Don Molter, a career counselor, Indiana Hemophilia & Thrombosis Center. We’ll also have community members give testimonials about their experiences in trying to change jobs or careers, and handling insurance,

Breakfast starts at 6:30 am and the program starts at 7 am sharp; see you there!

Great Book I Just Read
Genius on the Edge: The Bizarre Double Life of Dr. William Stewart Halsted by Dr. Gerald Imber

This is the amazing story of an American hero, the founder of modern surgery. Consider that just 100 years ago most doctors only needed a high school exam to get into “medical school,” and most had never even seen a patient by the time they graduated! It was more snake oil than science, and this at a time when Europe, particularly Germany, surged ahead in medical advances. In 1850 there was no anesthesia, no germ theory, no blood transfusions and few surgeries were even performed because the outcomes were usually disastrous. The best surgeon was usually the fastest. Patients who faced surgery often died of infection, gangrene or shock from blood loss.

Then along came Halsted, and changed all that. He studied in Europe, became a surgeon, and helped to create the leading edge medical school at Johns Hopkins University, the premiere hospital in America and one of the few that didn’t flunk the Carnegie Institute’s national assessments. He initiated the aseptic technique in America, which cut infections up to 90% or more following surgery. He insisted that everyone use latex gloves; he pioneered mastectomies, hernia repairs, and more. And even more, he trained men who became outstanding leaders and pioneers in their fields, including William Osler, William Henry Welch, Harvey Cushing (there are bios on each and I am going to read them! These men are like superheroes).

The book delves as much into his bizarre personality and personal life as much as his towering achievements. He was addicted to cocaine, and later morphine, which he apparently never kicked. He was fairly antisocial, and quite particular about his clothes and Italian shows–yet his house was cluttered like a hoarder! There is no doubt that his mark on history is great.

Whenever you or your loved one has surgery in the US, give thanks to William Halsted, whose high standards, complete dedication and genius, saved literally countless lives. I can’t wait to go to Johns Hopkins someday and see his portrait. I feel like I know him from this excellent book! Three stars.

NHF 61st Annual Meeting Wrap Up

Laurie Kelley November 9, 2009


Last week was the NHF 61st Annual Meeting, held at the San Francisco Marriott. Beautiful location, beautiful city and lovely weather all made this a very nice meeting for all. The fact that it coincided with Halloween in such a spirited city made it fun for many attendees. Of course there were meeting to attend, things to learn. No surprises (unlike last year’s meeting) and I was happy to see a big emphasis put on inhibitors this year. I attended the Grifols’ sponsored symposium on inhibitors, and was able to hear my friends Janet Brewer and son Stephen speak, as well as Kerry Fatula, mother of four boys (three of whom have inhibitors). If nothing else, the meeting was worth it to hear them speak. What powerful stories! They go through more medical interventions in one year than  I have been through in my child’s 22 years. This is a struggle faced by all families with inhibitors.

I was most happy to meet some folks from Medic Alert; our community uses their medical jewelery so often, it felt like meeting family!

I gave a presentation on Saturday at the Baxter symposium, with the theme “Your Tomorrow Starts Today.” It was fun to share the stage with John McNeil, a young man with hemophilia getting his medical degree, who also happened to be my child’s counselor back at hemophilia camp! Social worker Terry Hammink (University of Minn. Medical Center) did a great job moderating the morning. We were saddened only that Ellis Sulser, a top advocate in our community, could not join us as planned, due to his health.

See all the photos here!

I saw a lot of new families, and some long-time friends, some of whom I have not seen in 15 years! This is one of the great joys of our community, to know so many, to share so much with them, and to go through life together. No matter how many years have passed, a family with hemophilia is a family to us all forever. Congratulations to the NHF staff for once again pulling together a great meeting for our community.

After the meeting, I took a day off with Paul Clement and his family (Paul writes for us) to visit Alcatraz, the infamous island prison in SF bay. It was historical, educational, and chilling. I highly recommend it to all; you’ll not find many places like it.

Great Book I Just Read
A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah
I finished this in two nights. It is a gripping and tender story of an innocent African boy in Sierre Leone, whose idyllic life is torn apart by civil war when his village is raided and he is forced to become a boy soldier at age 12. He loses everything, his entire family, his innocence and even his memories as he is forced to survive and eventually commit atrocities against civilians and rebels alike. Eventually he is rescued by UNICEF, and he shares his painful rehabilitation without asking for pity. It is a harrowing account, and breathtakingly honest; Beah is an exceptional writer. There is a happy ending, though nothing can ease his lost years and innocence. A must read. Four stars.

NHF’s New Direction, Movie

Laurie Kelley November 17, 2008

The NHF ushered in new leadership at the 60th Annual Meeting in Denver this past week, just as our country has voted in new leadership. With many parallels to be made, there is a feeling that our community is ready for change. Val D. Bias, person with hemophilia and already a prominent leader in our community, was hired as the new CEO of NHF. The community faces a multi-front challenge to its current status: increasing pressure from payers to lower reimbursement rates; payers forming specialty pharmacies to switch patients away from traditional home care companies and 340B programs; tightening of funds to donate; speaking with one voice and one message; forming coalitions with other rare disorder groups; rising obesity in the bleeding disorders community. Many of these challenges were addressed in depth in the various workshops

About 2,000 attendees were said to be present at this historic meeting. For most it was a great reunion of long time friends and colleagues, and for many it was a first glimpse of the community with all it has to offer.

I have been attending NHF meeting since 1992, and saw many long time friends. In speaking with representatives of industry: home care companies, HTCs, pharmaceutical companies and the NHF chapters and hemophilia nonprofits, the most frequently mentioned word could easily have been “change.” Things are changing in our community, and without vigilance, a voice, a strategy and action, we could stand to lose many of the gains we have fought so hard to win over the last decade in choice and access of services and products.

Opening Ceremony: Theatrics or Thunder?

Perhaps this is why the opening ceremony was so different than any other I have seen. The room was a Democratic or Republican National Convention theme. Vertical banners with state names were placed in sections; a large screen projected images from the podium; and red and blue balloons poised overhead in a net, waiting to be spilled. Different, definitely different, people murmured. There was a cordoned off area with red, white and blue streamers: only certain people were to sit there, apparently.

Then the lights went out and the somber and foreboding 12-minute trailer of “Bad Blood” was shown. When it was finished, lights went out again, then a spotlight shown on Val, alone on the podium, seated on a chair. Val spoke for most of an hour, sharing his vision of where NHF should lead the community. No doubt aware of the audiences’ curiosity about the trailer, he stressed, “Let’s put our past in a place of honor, where it belongs, and move forward.” With that he introduced the Campaign for Our Future, which was already introduced to chapter leaders in June.

The slogan is: Access to Care Today, Achieving a Cure Tomorrow. Val stressed four areas of focus:

Government awareness and support
Education for all life stages
Access to care at HTCs
Research and training

A check for $2 million was presented from Novo Nordisk to support the campaign. Most if not all the manufacturers have also contributed to the campaign, which hopes to raise $10 million to implement the campaign. Then the balloons overhead were released and everyone cheered and applauded. It seemed to be a new start for the NHF, and most people left feeling upbeat.

Later on, as people filtered out of the conference hall, there seemed to be second thoughts and questions by people. Many asked each other, “What did you think?” The trailer for “Bad Blood” was grim, dark, and pointed fingers some said. What was the point of the film? Have we not had 23 years of success, with no documented viral transmission? “What does the movie have to do with the new campaign?” one attendee asked. “If it’s for the future, why are we bringing up this past again?” Some people said they cried just watching the trailer as it evoked strong emotions of children contracting AIDS in the 70s. Some had nodded their heads approvingly as the film was being shown. Others feared the film was too strong, too biased, that it set the wrong tone for the NHF meeting: the movie would stir up negative feelings and fear in the absence of adequate general information about blood safety to new parents at a time when plasma products are just making a comeback. Everyone suddenly seemed to have a strong opinion. It was indeed a different kind of NHF opening: thunderous to make people take action, or theatrical to gain attention?

There was a lot to think about, and a lot to do. I was privileged to attend the Medical and Scientific Affairs Council (MASAC) to present my factor donation program, Project SHARE. As we donate millions of units of factor each year, we thought it a good idea to let MASAC know how we operate and answer any questions they might have.

The two and a half days NHF conference were filled with workshops, lectures, and symposia on all types of subjects related to hemophilia and von Willebrand Disease. Social events included lunches, raffles, and the final event, sponsored by Baxter: a wonderful and lively band, dancers, plenty of food, picture taking and dancing. Everyone got in on the dancing, which went till 11 pm. NHF planners and staff are to be commended for their ability to accommodate so many people with so many needs in so many sessions so perfectly and graciously.

If you attended NHF’s Annual Meeting this past week, please feel free to leave a comment! I’ll write next week about some of the meetings I attended while at the meeting.


See all the photos here!

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