October 2006

A Consumer Council for Inhibitors

I was in Chicago on Thursday and Friday to facilitate the Novo Nordisk Consumer Council meeting; this is the third such meeting which brings together parents and patients who are also opinion leaders for a day of analysis and brainstorming to determine better ways to educate and empower inhibitor families. Novo Nordisk flew our council members in from Ohio, California, South Carolina, Rhode Island and Pennsylvania, and despite stormy weather, which delayed many flights, most members were able to gather for an elegant dinner at Nick’s Fish Market to get reacquainted.

The next day was productive and stimulating. After breakfast we dove into our agenda, discussing inhibitor patients’ needs and ways to address them. Council members brought in sample educational materials for other chronic disorders, which we analyzed for their usefulness by rating content, layout and user-friendliness. We had a discussion after lunch about the business structure of the hemophilia market and how products are valued. Insurance played a large role in all we discussed.

The Consumer Council was designed to be a forum for inhibitor patients to vocalize they concerns directly to a manufacturer, and provide feedback to a manufacturer on its own marketing materials and efforts to educate. It also allows a manufacturer to directly educate consumers, who will in turn educate consumers back from where they come. It is a great two-way interaction that benefits everyone. I was very sorry to leave my good friends Friday afternoon, many of whom remained for the Novo Nordisk Inhibitor Summit meeting on Saturday. Me? I chose to be in Boston for my daughter’s 16th birthday. In all the years I have worked with the hemophilia community (17 now) and in all my travels, I have not yet missed any of my three children’s birthdays.

On the plane ride home, no celebrity sighting but something just as amazing. Sitting next to me was a 30-year-old man, who looked remarkably like a 20-year-old college student. Brett was charming, talkative, and full of ideas and life. He owns an entertainment consulting company, and teaches teambuilding, goal setting and leadership, topics near to my heart. He simply exuded energy, enthusiasm and zest for life. When he asked what I do, he listened with much interest. When I finished he told me he knew a guy with hemophilia. I felt it coming–most likely I know him, too! Sure enough, it was Ali B., my son’s counselor from Paul Newman’s Camp Hole in the Wall Gang in Connecticut! Is that strange, or what? Yes and no; things like this happen a lot, the more I travel and chat with fellow passengers. Brett and I met as strangers and parted as friends, vowing to share our entrepreneurial experiences in the future and stay in touch. I didn’t get home till 2:30 am, but appreciated a happily surprising end to a great trip!

Tour of Bayer Plant

I escaped the chilly Boston weather for a few days to visit some community friends along with representatives of Bayer in Berkeley, California for Bayer’s new Multidisciplinary Board meeting. This is the second meeting we have held this year. An eight-hour plane ride brought me to beautiful San Francisco, surely one of America’s prettiest cities. I caught up with Mike Rosenthal, formerly executive director of the Hemophilia Association (Arizona), who is still active in the community. Later, at dinner, our colleagues included Dr. Craig Kessler (Georgetown University), who was just elected chair of NHF’s MASAC, Kyle Callahan, president of Hemophilia Health Services, Sandy Oliver, director of Public Policy and State Government Affairs at Bayer, Paul Bedard, director of Kogenate FS marketing and Terry Tenbrunsel, vice president of Bayer. We also enjoyed the company of Harp Maan, a young business student with hemophilia who had just finished Bayer’s first leadership program. This is a 10-week internship that exposes the participant to all aspects of working for a pharmaceutical company, from marketing to production to patient activities.

On Friday we spent the morning learning more about Bayer’s products and providing feedback about the community’s needs. In the afternoon, we had a fascinating tour of the production facilities. We learned how Kogenate FS is made. This involved gowning up, which requires wearing special garments and layer and layers of protective plastic material so we do not contaminate any aspect of production. We had an escort at all times who explained the process scientifically, and also made sure we did not violate any procedure that would cause contamination. From fermentation to purification to packaging, it was an impressive look at how recombinant factor concentrate is made. Accompanying me was Mike Rosenthal and Paula Hackenjos, Terry’s executive assistant. An employee of Bayer for 20 years, this was Paula’s first tour of the plant, and she and I joked that we felt like we were wearing our pajamas as we paraded by the scientific machinery, cold rooms, and sterilization equipment.

I was deeply impressed with the manufacturing process and how it is designed to provide safety at every level. The staff were knowledgeable and warm, and so enthusiastic about their work! And you would not believe the steps and procedures it takes just to make one vial of factor!

That night we all reconvened for a lovely dinner, where we all became better acquainted, while overlooking San Francisco’s vast bay, glittering with lights strung from the bridges and twinkling from passing boats. Dr. Glenn Pierce joined us. You may recall Glenn was NHF president two times, is a doctor, a person with hemophilia, and now is vice president of Preclinical Development at Bayer. He is also a personal friend of both my husband Kevin and mine. Thanks to Terry and Bayer for the gracious welcome, dinners and chance to tour the plant. We appreciate the forum for airing our comments and concerns, and to meet with some dear friends in the community

NHF’s 58th Annual Meeting

From Thursday to today I attended the NHF’s annual meeting in Philadelphia, the city of “Brotherly Love.” I’ve been attending each year since 1991, and they grow bigger each time! It was a great pleasure to meet up with so many friends and acquaintances.

The theme of this year’s meeting was “Opening New Doors.” Particular attention is always given to new families of babies diagnosed with a bleeding disorder, to orientate them to our community and provide resources. There is a social opening night, welcoming ceremony, many sessions headed by experts on a variety of topics, dinners, a wonderful outing to the Franklin Institute and a final evening that features a band, dancing, lots of food and more. This may have been the biggest NHF meeting ever, with thousands in attendance. It was a beautiful sight to see on the dance floor, when the band took a break, so many little boys of all ages whooping it up, running, sliding and dancing. Healthy and active, these boys are living proof of the benefits of prophylaxis, plentiful medicine and regular HTC visits.

I gave three presentations: a brief one at ZLB Behring’s headquarters as part of its open house for the Philadelphia community (ZLB, the Pharma Formerly Known as Armor, Centeon and Aventis Behring, is my oldest business relationship in the community, spanning 18 years!); a talk on “Prophylaxis and Insurance,” and how insurers may be targeting prophy next on the cutting block; and a look at “Hemophilia History as His Story”… the history of our community from 1987, and how it paralleled my son’s life. I’ve never discussed publicly our story and what we went through, and it was really fun to show photos and put it in the context of what was happening in hemophilia, and the world in general. It was rather sad to also note publicly the many consecutive years (oh, about 17) that the Boston Red Sox did not win the World Series!

As always, the companies that fund our community were there with booths, give-aways, information and games for the children. Strolling through the displays and booths gave families the chance to ask company reps questions and to compare products and services.

There were too many excellent sessions to discuss here. But some hot topics included reimbursement, healthy joints, physiotherapy, and surviving natural disasters through planning. Be sure to sign up for “HemAware,” the NHF’s publication, which I am sure will review the meeting in greater detail. And try to attend a national meeting sometime! The next one is November 1-3, 2007 in Orlando. I hope to see you there!

Thanks to the NHF staff for their phenomenal teamwork in bringing this event to our community: it was a huge success in every way.

Next week: I’ll be touring the Bayer Kogenate FS plant in Berkeley, California. Please check in to see what it’s like!

Why You Need to Know PBMs

This weekend I visited Cuyahoga, Ohio, near Cleveland, to speak at the Northern Ohio Hemophilia Foundation’s annual meeting. I am very grateful to Lynn Capretto, executive director, for inviting me. I was able to meet with about a dozen new families I had never met before. The weather was great, the turnout wonderful. Lynn and her team worked hard to make this a success.

My talk was on insurance (what else?) and it appeared much of the information I shared was new to these families, who listened with great attention. I was happy to know that all the families subscribed to the NOHF’s newsletter, as it’s very important that everyone these days get their local newsletter. Insurance is different from state to state and your local hemo org is the best place to get information about changes. But I was amazed that almost none of the families get HemAware, the NHF’s magazine. I urged them to sign up Monday, and of course, Monday is a holiday. Okay, make it Tuesday. If you are reading this and you don’t get HemAware, please sign up! Call 1-800-42-HANDI and get on the mailing list.

Well, the audience redeemed itself. Everyone knew what PBMs were and that’s good news. What I didn’t know, and wish I had, was that certain factor brands in Ohio are being considered for a PDL. Scary stuff! Don’t know what PDL is? For shame. Order our newsletter PEN and find out. You NEED to know!

We had a lot of laughs when I had to select the raffle winners (I say have to: Lynn volunteered me because if someone was upset that they didn’t win, they could blame me but so what? I’d be on the plane headed for Boston!). The winners? The delightful family who had been sitting right next to me all throughout the day: Chris and Renee LaBelle. Sharp, proactive and articulate. I couldn’t think of a better family to win a free trip to NHF this week in Philadelphia!

Well, I had another celebrity citing at the airport in Cleveland. I travel a lot, and now and then I bump into an odd assortment of celebrities. In the past this has included Richard Simmons, Paul Newman, Ben Affleck, Tony Robbins, Bo Diddley, and Jim Rice and Pedro Martinez (both formerly of the Red Sox). This time it was Erik Estrada. Remember him? The hunky cop in the 1980s show CHiPs? I was walking right behind him for a long while, not realizing who he was but noticing him nonetheless (celebrities somehow carry themselves differently!) and a woman cried out “It’s Erik Estrada!” I didn’t grab a photo as I am wont to do, to add to my “Wall of Fame” at home, but I do have a photo of me with Dan Holibaugh, a long-time friend, fellow parent and current employee of Matrix. Thanks to Matrix and Baxter for co-sponsoring my visit to Ohio, and to NOHF for a wonderful event.

Tune in this week to NHF in Philadelphia! I hope to have some spare time to blog!

When Hemophilia Throws a Curve Ball

This past week I was reminded first how blessed I am to have a son with “only” hemophilia, and second, how important it is to remember our community members who are in the hospital or confined at home. I visited Rich P., a 23-year-old with hemophilia and inhibitors, who is as compassionate as he is passionate, and who is as proactive as he is intelligent and thoughtful. He is a leader with the NHF Youth Commmittee, on at least two patient advisory boards, a full-time college student, and has volunteered on two trips this year to help the poor in Jamiaca and in New Orleans.

Sadly, Rich has been hospitalized for over two weeks, for complications related to his inhibitor. Rich called me the day he was hospitalized, and would be an inpatient for another two weeks. For a guy as active as Rich, being immobilized in the hospital is nothing short of mental torture. When I visited he was surrounded by balloons, cards and stuffed animals and eventually his wonderful friends. As blessed as he is with charisma and a loving family, he was suffering terribly. Yet he still had the kindness to ask about my family and work! Some devoted friends in the hemophilia community have been visiting him, advocating for him, and keeping his spirits high. I was proud to see how our community cares for its own. And I was completely impressed and touched when the VP of a factor manufacturer traveled hours to spend an afternoon with Rich.

Thankfully, many of us will never know that kind of suffering, thanks to advanced treatment. But once in a great while, hemophilia throws us a curve ball. Do you know of someone who is bed-ridden, in the hospital or in pain due to hemophilia? Don’t forget them. Send a card, flowers, make a call. You won’t believe the difference it will make in their spirits. The attention you show really helps relieve pain, anxiety and loneliness. Bless all of you who care for the sick, suffering and lonely in our community.

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