Novo Nordisk

Largest Ever Inhibitor Meeting

Laurie Kelley October 8, 2007

The Novo Nordisk Dallas Inhibitor Education Summit was the largest ever gathering of inhibitor patients in the world–very impressive! Over 75 families attended. In the US, there are only about 1200 people with inhibitors. Trying to get this small group together for weekend is not easy, but they came from Wisconsin, Massachusetts, Florida, California and Pennsylvania, as well as many other states. It was great to see both old friends and make some new friends.

On Friday, I facilitated the Novo Nordisk Consumer Council Meeting, which brought together for the last time a team I have worked with for two years. Our role is to offer feedback to the marketing team at Novo Nordisk about product enhancement, educational materials, and needs in the inhibitor community. We also reviewed the first winner of the Uninhibited Achievement Award, Mike McNamara, whom we had all selected at a previous webcast conference. Gar Park of Novo Nordisk reviewed our achievements of the past two years, and they were amazing! I think of all the consumer advisory groups I’ve worked with or facilitated this has been the most productive.

There were lots of tears shed when parting came (right, Theresa?), and we are now accepting applications for the next two years. If you know anyone with inhibitors or is a caregiver of a person with inhibitors who might be eligible and available, please let us know! We will need about 10 new council members.

The rest of the weekend was a series of excellent lectures and panel discussions on topics ranging from factor IX and inhibitors (an incredibly rare combo) to pain meds to advocacy. Excellent speakers, audience participation and flawless event planning by Cadent Medical made for a memorable weekend.

Next year the Summits will be held, but maybe with some changes in venue and direction. Be sure to check with both the NHF and HFA to learn where and when they will be held. If you have inhibitors, you will not want to miss these! All travel expenses have been paid by Novo Nordisk so it will cost you nothing to attend, and you have everything to gain!

(Photos: top down, Panel discussion; Consumer Council at Work; Mario and his mom, from San Antonio; Laurie with Deena and son Tyler; Jessica and Kerry; Laurie and Kerry with Cowboy Jim!)

Inhibitor Summit in San Diego

Laurie Kelley July 23, 2007

I am in California all this week and just spent the weekend in San Diego at another great Inhibitor Summit, this one with a record number of attendees from across the US. The energy at these events is tremendous, and the parents and patients are actively involved in all sessions. I was glad to see many people returning from last year, which made this very much like a reunion of friends.

Friday began with a wonderful review of inhibitors by Susan Karp, RN (University of California, San Francisco), who is well known and respected in our community. In the evening after dinner, a fun yet insightful icebreaker by Heather Huszti, PhD, a psychologist who works with families with hemophilia, who had quite a few fans in the audience. The activity taught us a lot about teamwork.

The Main Event on Saturday was chaired by Dr. Guy Young, now based in Los Angeles, who also gave us an overview of treatment strategies. And an incredibly inspirational talk was given by 23-year-old Rich Pezzillo of Rhode Island, whom I am honored to call my friend, about his experiences with inhibitors from age 18 to age 23. Rich has suffered tremendously and faced many hardships in the last five years, but it has only strengthened his resolve to live life to the fullest and deepened his faith. His speech really set a positive and uplifting tone for the day.

There were sessions on venous access, diet, surgery, parenting, transition and ITT. The day ended with a great educational talk by Nathan Wilkes of Utah, who has a son with an inhibitor, on what he has learned about advocacy.

See photos of the event here.

Well, the day didn’t actually end there. It ended with an amazingly fun celebration, under a covered tent, with a traveling petting zoo for the kids–complete with monkey, chinchilla and tortoise. And for the grown ups? Karaoke and dancing! Wow, do I have some incriminating photos of some of our community members! Only half kidding, just some memorable shots of dear friends having a great time. I do recall: Matt Compton and Gar Park singing “I Wanna be Sedated”; Chris and Leland Smith rapping “Walk This Way” a la Run DMC/Aerosmith with Ezra Robison; Shuantaye belting out some amazing Beyonce; Eva cutting some amazing dance moves; Eva, Shantaye, Doreen and the ladies looking like “Dreamgirls”; and everyone (me included) doing the electric slide! It was a wonderful time and we all thank Novo Nordisk for sponsoring this fabulous event that not only educated us, but brought us together to make happy memories and new friends.

I have the greatest admiration for families with inhibitors and what they endure, and am impressed with their exceptional medical knowledge. Congratulations to them all for their perseverance, fortitude and achievements!

Next Summit? In Dallas, October 6. Check out www.inhibitorsummits.org to see if you qualify to attend. I hope to see you there!

Taking Japan to the Next Level

Laurie Kelley June 12, 2007

Yuko and I flew into a rainy Tokyo Sunday morning and dashed directly to meet with a group of about 50 patients and family members. I presented the US system of healthcare for hemophilia, including comprehensive care, product choice and the homecare system. Japan has a decentralized healthcare system for hemophilia: there are over 1,000 clinics and hospitals serving 4,000 patients, spread out over the island. Some of these have some components of comprehensive care, while lacking others. It’s not complete comprehensive care the way we know it. A center might have a hematology ward, a physiotherapist, a surgeon, but not a dentist affiliated with the center, nor a psychologist or social worker. There is no home delivery of factor: patients must go to a pharmacy to retrieve it, and are limited in how many vials at a time they can bring home. The national organization is also decentralized, and has numerous chapters. I wondered at their level of communication, however, when I learned that the hemophilia society does not have a national newsletter. This was very surprising: how do you learn about hemophilia? I asked. How do you know what is happening with your national society? With the world organizations? With breaking medical news about hemophilia? No one could really say.

One young man with hemophilia, who happens to be a hematologist, offered an explanation. After the prolonged and heartbreaking fight to win compensation and justice from the Japanese government for the AIDS scandal, families were weary, broken. They went home and stayed home, recuperating emotionally, not asking for things like comprehensive care or a newsletter. Progress on the national hemophilia society plateaued. He then passionately added he thought it was time patients start becoming active again and set goals for their society.

I reflected that Japan is one of the most industrialized nations on earth: I asked the audience, why not think about complete comprehensive centers? A national newsletter? Some books on hemophilia? Maybe even homecare delivery? These were questions that prompted discussions and nodding heads.

The mood of the audience seemed lifted and inspired: I think they want to start meeting again as families, sharing stories, and reassessing their priorities. Home delivery seemed high on the list! This would be a breakthrough for hemophilia care.

Before I left the families, I happily met Hitoshi Kawano, father of a man with hemophilia, and Shinji Abe, whose young son Taiga has hemophilia. Both fathers had contacted me years before, and we had shipped books to them. I had stayed in regular contact with Hitoshi and his wife Yuko. Hitoshi and Yuko had translated my book “Joshua” and printed it in color; it is the only book in Japanese about hemohilia for children. He is also planning to have the other two books in the series printed and available. We were so happy to meet in person!

On Monday Yuko and I had a little time off before I headed to the airport. She took me to Tsukiji, the world’s largest fish market, where millions of fish were laid out for selection: red snapper, grouper, eel, crab, squid, scallops, sardines, and tons of tuna! All of it fresh, odorless, glistening under the lights. (Did I forget to mention that I ate raw octopus? It was… different!) Next we paid our respects at a Shinto shrine, to see the colorful lamplights, prayer paddles, and various plaques on which there were prayers to the fish who gave their lives for us. Our last visit was through Thunder Gate to Sensoji, the oldest Buddhist temple in Tokyo, which was beautiful. By then a downpour threatened to ruin our cameras and gift bags so we hightailed it to the airport, after a final delicious Japanese meal. The food in Japan is out of this world, in flavor, presentation and health value.

Japan is a gorgeous country, clean, efficient, with polite, intelligent, gracious people. It has a fascinating history, and good health care. But I sense that it could even do more to improve its hemophilia care, given its vast resources. Recent and reliable data show that Japanese patients wait on average 12 hours after the onset of a bleed to infuse–and this is much too late. Patient groups are splintered. National unity among patients, and the patients’ own empowerment level seems weak. At least one young leader seems motivated now to address these issues.

Thanks to Novo Nordisk for sponsoring this trip, for allowing me to share our system of hemophilia healthcare with audiences of both Japanese doctors and nurses, and patients. This is the way all countries grow and learn, from each other. Sayonara!

See photos from the entire trip here.

Hiroshima: Center of Peace

Laurie Kelley June 10, 2007

Tomorrow I fly home and conclude a wonderful trip to Japan. Yesterday in Hiroshima, before I gave my presentation, I had time to slip out to the Peace Museum. This expansive, eerily quiet edifice preserves the memory of those killed on August 6, 1945, when the first atomic bomb was used. Inside, Yuko and I read in hushed silence what life was like in Hiroshima the morning the bomb fell, and the devastation that followed. The museum has recovered the actual clothing of some of the children who died in the attack, and most notably several watches, with hands frozen at 8:15 am, when the bomb struck. It was hard to sit through the 30 minute opening film without tears filling our eyes, viewing how the victims suffered. Hiroshima has since become the epicenter of a world peace movement, and every mayor since 1968 has written to world leaders whenever a nuclear weapon is tested, urging them to stop the spread of nuclear weapons. The photo above shows the A-Bomb Dome, now a World Heritage site, which is all that remains of a building near the hypocenter of the blast. It was also about the only thing left standing in the city.

Later, I presented to an audience of 123 hematologists and nurses what hemophilia is like in the US, and how patient involvement and early intervention can make life with hemophilia more normal. Doctors are highly revered in Japan, and ironically this can make patients/parents both comforted and complacent, leaning too much on their medical team’s expert advice.

With any chronic disorder, patients and parents must take charge of their own daily life and future. The role of homecare companies was a new one to the doctors and nurses, and at the reception that followed, we discussed how this has improved medical care on the US. Currently Japanese families are prescribed factor through their physician and pick it up at a local pharmacy. It was stimulating to speak to such a high-powered audience, and though role playing was on the agenda for the evening (where doctors would switch professional roles with me or their nurses and enact some real-life scenarios to see how they react), we simply ran out of time. I heard more than a few “whews!” in the audience!

View all the photos from the trip here.

(Photos: A-Bomb Dome; Hiroshima on August 6, 1945; Laurie with Japanese hematologists; Laurie with her hosts, Novo Nordisk Japan)

Inhibitor Summits 2007

Laurie Kelley March 5, 2007

Many people have been asking us about the Inhibitor Summit meetings that were so successful and useful in 2006. They are now scheduled in 2007. Sponsored by Novo Nordisk, these are really the only meetings that are truly addressing the need of patients with inhibitors. Here’s the schedule:

May 18-19 Nashville, TN
July 20-21 San Diego, CA
October 5-6 Dallas, TX

For more information, visit www.inhibitorsummits.com or email us, and we’ll update you. If you are a family or patient with inhibitors, you may qualify for free airfare and hotel! I’ll also be attending and look forward to seeing you there!