One of the greatest things about working in the hemophilia community is the opportunity to rub shoulders with some incredible people, as I did this weekend. I am a member of the Bayer Multidisciplinary Board, which met Friday in New Orleans for dinner, and then all day Saturday for an informational and brainstorming session. With me were: Mr. Terry Tenbrunsel, VP Bayer; Dr. Craig Kessler, chair of MASAC and chief hematologist at Georgetown University; Dr. Prasad Mathew, medical director of the hematology program at the University of New Mexico; Mike Rosenthal, president of Hemophilia Innovations; Tom McNulty, COO of Ancillary Care Managment; Kyle Landskroner, PhD, Medical Science Laiason at Bayer; Derek Nate, Regulatory Affairs, Bayer; Marianne Drysdale, Senior Director, Hematology Marketing, Bayer; Shari Bender, parent of a girl with hemophilia, whose husband Steve sits on NHF’s board of directors; Kyle Callahan, former president of HHS; and two special guests–Rich Pezzillo and Patrick Haggerty, two incredible young men with hemophilia who just graduated from Bayer’s leadership program, dubbed “Hemophilia University.”
With such an all-star cast, you can imagine the breadth and depth of discussion. Tom allowed us to spend two full hours just on the subject of reimbursement, and his knowledge is only surpassed by his passion. His message? The bleeding disorders community is in for more permanent changes, and we need to unite, form a solid message to payers, and act. This is actually what we at LA Kelley Communications have been preaching since November 2004 through our publications and presentations: PBMs are here to stay, payers are gaining more control, and beware of being complacent, too trusting and too entitled. Nothing is guaranteed anymore, and we will need to fight to keep our choice of provider and product.
Lending great exertise to the subject were Dr. Kessler, whose HTC runs a 340B program, and Kyle Callahan, former head of the largest hemophilia homecare company. Kyle may be in retirement but he simply knows too much to let him drift away!
Kyle Landskroner gave a wonderful overview of Bayer’s scientific acheivements and an update on their longer lasting Kogenate FS, which is in clinical studies. The results are very promising. Imagine being on prophylaxis, but only having to take one shot a week, that lasts all week!
But the highlight of the day was truly the young men, Rich and Pat. Rich is a good friend of mine, and Pat I have known about since he was a baby! His mom Mary and I have been pen pals for about 17 years. Mary submited stories about Pat for my first edition of “Raising a Child With Hemophilia,” and I wish I could say the advice I gave her helped to raise this amazing young man! But the credit goes to her and her husband, and to Pat himself. How wonderful for me to see him at age 20, involved in the community, attending college, and hoping to go into sports management. Yes, sports as a career! Pat is a phenomenal swimmer, athelete, and student. Hemophilia doesn’t get in the way of his dreams.
Rich Pezzillo is simply a legend in our community, at the ripe ol’ age of 23. He has been through tremendous medical and emotional ordeals due to his inhibitor, but no one has more vision, hope or perseverance than he has. He is one of our future leaders, mark my words, and someone who is dearly cherished by all. Both young men gave a fabulous overview of their summer internships at Bayer. They learned about product manufacturing, marketing, clinical studies, community partiticpation, presentation. They helped create marketing materials and met with Bayer’s PR group to develop a strategy for bringing them to market. Incredible lessons in business. Bayer’s leadership program is a unique, amazing internship for qualified young people with hemophilia that is now in its third year. Rich and Pat have shown that it opens doors in business as well as opens minds. Its goal? To train emerging leaders in our community. Our generation cannot keep running the show forever, and Bayer has the vision to start training these interns while they are young, from inside the industry. Brilliant, and congratulations to Rich and Pat for an excellent presentation–you make us very, very proud! And our deepest thanks to Bayer, especially to Terry, for the vision to create this program, and to extend so much personal time investing in the hemophilia youth, our future leaders.
To learn more about Bayer’s summer youth leadership program, visit www.livingwithhemophilia.com
(Photos: Patrick Haggerty discusses his internship; Rich Pezzillo and Pat share their experiences; Laurie with Pat, whom she has known about for 17 years and finally has met!)