Bayer Multidisciplinary Board

Looking Into the Future in Chicago

Laurie Kelley October 30, 2011


While a winter storm gathered back on the east coast, I was in Chicago for a meeting with the Bayer Multidisciplinary Board Meeting. This is a group of thought leaders from the hemophilia community who meet once a year to discuss current trends in treatment, products and insurance, and predictions of what the community will look like and need in five to ten years.

I was unable to attend last year’s meeting at this time, so it was very nice to be back with the group, all of whom I knew. The team includes top hematologists, insurance experts, some adult patients, and homecare, distributor and nonprofit representatives. Of course, the hot topic is insurance! How are payers affecting the decisions being made now on treatment choices and product pipeline? For example, it’s already happening that payers are dictating brand choices in some places, said one participant. The impending merger of Express Scripts and Medco, two of the three largest PBMs, will radically upset the hemophilia apple cart and change the hemophilia landscape forever. Exactly how that will change was open to much speculation.

The most extreme prediction involved the fate of HTCs. One prediction is that in ten years there will only be half the current number of HTCs operating. There will be fewer hematologists. “We are victim of our own success,” expressed one doctor. Hemophilia has become so manageable that patients are less dependent on the HTCs. With cuts in federal funding, expect to see many close their doors forever. I saw this myself in New Mexico, where the HTC is struggling.

The bleak forecasts were accompanied by good news: treatments are better than ever, allowing a more normal life. Newer products, greater choice and who knows, maybe even cheaper products. Stay tuned–in 2012 I will provide a forecast by our community experts on what you can expect in the next ten years. It’s going to be a roller coaster ride, folks.

Interesting Book I Just Read
Sing You Home
Jodi Picoult

I normally don’t read fiction unless it’s a classic. This book was given to me as a gift. It tackles several hot buttons: gay rights, surrogate pregnancies, Christian fundamentalism. A music therapist—Zoe—finds herself childless at age 40, after a stillbirth. After her husband Max leaves her, Zoe eventually falls in love—with female counselor Vanessa. Eventually they wed in Massachusetts, my home state, and the first to make same-sex weddings legal.

Max, a recovering alcoholic, begins to attend a fundamentalist Christian church at the behest of his brother. The pastor is anti-gay. Max becomes a born again Christian.

The plot really thickens when Zoe asks Max to release one of their stored embryos to her so that Vanessa can carry their child, for the two women to raise; he counters by suing her for custody of them. So the book covers controversial issues as gay rights, evangelical Christians, in vitro fertilization, surrogate parenthood, and divorce. All this happens within six months! The story is from the points of view of three characters in alternating chapters. It’s a thought-provoking book on change, tolerance and what constitutes a family, when the biological parents have such different beliefs and life-styles.

Life is more complicated than presented here, however. Max became a born-again just in time as a set up to the ethical question of who should raise the kids. Christian fundamentalists seem very stereotyped. There are a lot of issues competing for the readers’ attention, and the ending is too neatly wrapped up, too quickly. But if you like to read, want a book to stimulate some thoughts about many current topics, this is one you can get through quickly. As an editor, I tend to be pretty harsh on how a book is written, but sometimes it’s nice just to read a different kind of book. Two stars.

Infuse Less, Play More

Laurie Kelley October 6, 2008


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 Naples

Laurie Kelley March 10, 2008


I spent this weekend in beautiful Naples, Florida, attending a Bayer Multidisciplinary Board meeting. This is a fascinating chance to brainstorm on concerns within the community with some talented and diverse people, to discuss current insurance trends, and hear about new ideas on treatment coming from a manufacturer.

One the most interesting segments was listening to Dr. Glenn Pierce, VP Clinical Studies at Bayer, and former NHF president, share progress on Bayer’s longer lasting formulation for Kogenate FS. While we wait for a cure, which could take years, longer lasting factor could be the next great thing for our treatment. Imagine prophylaxis that only requires one shot a week, but is as effective as three shots a week.

As always, I am humbled by how fortunate we are to have in our community so many dedicated to our welfare, and who joined us this weekend, such as Dr. Craig Kessler, currently chair of MASAC, Dr. Prasad Mathew, Regina Butler, RN, and Mike Rosenthal, formerly of the Hemophilia Association (Arizona). And as consumers we are grateful to be included in these round table, informal gatherings. This weekend I was able to see my buddy Rich Pezzillo, friend Kyle Callahan (former president of HHS), and fellow mother Shari Bender, whose husband Steve sits on the NHF board.

While I cannot share the topics we discussed, I can say that these opportunities are golden to learn and to give feedback. If anyone is offered the chance to serve on any manufacturer, HTC or home care advisory board, I strongly encourage them to participate. Thanks to Bayer for providing us all this wonderful opportunity to serve! (Photos: Rich Pezzillo and Mike Rosenthal; Craig Kessler with Shari Bender and Laurie Kelley)

Great Book I Just Read: The Truth About the Drug Companies by Dr. Marcia Angell. You may think this is a strange juxtaposition, after I just attended a drug company sponsored meeting, but I am researching an article on marketing by the pharmaceutical companies. Angell, former editor of the prestigious New England Journal of Medicine, has an axe to grind for sure, but reports on the behind the scenes maneuvers by “big pharma” as it attempts to weild influence over both consumers and law makers. While this is mostly about pharmaceuticals (pills) and not biologics (typically injectibles, like factor) it nonetheless will open your eyes and make you more critical when you order or purchase any pharmaceutical product– and critical when you meet with your physician. Angell describes practices such as how the drug companies influence physicians to prescribe their products through gifts, junkets and marketing programs. Most interesting is her claim that the cost of marketing is much greater than the cost of R&D. It’s well known that the drug industry is America’s most profitable, and she discusses some of the reasons why this is so, and perhaps why it should not be so. Not totally applicable to the factor industry, but it is excellent food for thought. Three/four stars.

Dr. Craig Kessler, Shari Bender, Laurie Kelley
Cheers!! Rich Pezzillo and Mike Rosenthal

Brainstorming in New Orleans

Laurie Kelley October 15, 2007


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!)

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