www.LivingWithHemophilia.com

Infuse Less, Play More


I spent this weekend in Newport, Rhode Island to attend the Bayer Multidisciplinary Board meeting. This is a group of representatives from the community (from home care, NHF chapters, manager care, pharma, HTCs, consumers) who get together twice a year and brainstorm, share and offer opinions to the marketing team at Bayer HealthCare. Most manufacturers have these, and even some home care companies. These forums are a great way to learn what is happening in the community in an informal lieu, with intelligent and proactive individuals.

Now some of what we discussed is confidential, but the most exciting news is not confidential. It’s about the clinical studies for the longer lasting factor VIII product. The study is moving into phase II, with 250 patients from many countries participating. Patients are treated with a factor product each week in this study, but the study is double-blinded, which means that neither the physician nor the patient knows whether they are getting regular factor or the longer acting factor. This is the largest clinical study in hemophilia history, I believe. Results are promising: some day I believe we will have a factor product that can be infused once a week, but keep factor levels high the entire week, eliminating the need for three time a week infusions.

Bad News: Tomy McNulty, chief clinical officer of Novologix, a consulting firm, updated us on the payer side of the reimbursement crisis. He affirmed what we announced back in 2004: the system of reimbursement for hemophilia products has changed permanently; home care will continue to consolidate; hemophilia consumers will no longer have complete choice of product, physician or provider. Of the three, provider choice is of the least concern to the payer. In other words, you’ll use payer-designated home care X and like it. We’ve already seen two home care companies go out of business: who next?

Good news: Bayer unveiled for us a new website called “Living Beyond Hemophilia,” for teens and young patients with hemophilia to help them through their transition to adulthood. It’s an excellent site, with a career assessment form, thought provoking questions and answers) about how to prepare for a first job interview, how to prepare for college, and even internships that may be of interest. Having a 21-year-old still in college an struggling to live on his own, this is the kind of site he can go to again and again to get tips on being prepared for what life brings. Check it out http://www.livingbeyondhemophilia.com/

Great Book I Just Read: The Picture of Dorian Gray, by Oscar Wilde
I am ashamed to say I never read anything by Wilde other than his pithy quotations. (His last words on his death bed are rumored to be: “Either these curtains go, or I go.”) This is the only book he ever wrote, and it is masterpiece. Considered one of the last books of the Gothic horror age, it is also a scathing summation of upper crust British society, which in the 1800s is obsessed with appearances–the appearance of being wealthy, beautiful, talented. The book asks, and answers: What does a life of pure hedonism and egoism do to the soul?

Dorian Gray is by all accounts a stunningly handsome man, from a wealthy family, and yet innocent at heart. Noting his handsome face, an artist creates his portrait, a chillingly accurate representation. With constant adoration of it and of Dorian himself from the adult men, Dorian eventually wishes that he always look like his youthful appearance in the portrait, and never age. In a Faustian bargain, the wish is granted. Dorian remains eternally youthful, while the portrait ages, and not just ages, but mirrors the deterioration of his soul as Dorian embraces a life of extreme and callous hedonism. Just like every person with a dark secret, he hides his portrait from all eyes. But this secret eats away at his humanity. Without any physical or visible consequences of his wretched lifestyle, he continues to sample every vice there is, earning the condemnation of his friends and of society, who yet still envy him his eternal beauty! Eventually, his lifestyle impacts others deeply (there’s a murder, suicide, etc), and finally causes him to ponder what he has become. No matter how much he hides his wanton lifestyle and feelings, the portrait reflects greed, suffering, hatred, extreme consumption, lack of purpose, narcissism, and amorality. The portrait holds an iron grip on his soul. Wilde is an interesting writer: while the dialogue appears to ramble at times, and there is a lot of overt melodrama, Wilde is, after all, a playwright. It’s Wilde’s command of the English language that is pure joy: razor sharp, line after line; I found myself ingesting his richly nourishing ideas, strategically placed words and flowing prose. Four stars!

Brainstorming in New Orleans


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 Management; 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 expertise to the subject were Dr. Kessler, whose HTC runs a 340B program, and Kyle Callahan, former head of the largest hemophilia home care 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 achievements 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 submitted 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, athlete, 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 participation, 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!)

Go On–Ask Me a Question!


Bayer unveiled a new website last month, called www.LivingWithHemophilia.com, and Susan Zappa, RN and I are featured as their first “Ask the Experts.” I am focusing on insurance, but was asked just about everything else, too! From FXIII deficiency transmission, to the use of ice, to what to do with unused supplies, it’s been an interesting first month.

Check out the site. It is bright, colorful, interactive, easy to navigate and very user-friendly for hemophilia families. And ask me a question quick, before I’m replaced by the next expert! In our community, there are a lot of experts–return each month to see who they are.

There are also a lot of new products and services for families in the offing by many companies, and I hope to continue to showcase some of them here.

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