October 2007

Acquisition Time Again

Those hungry home care companies are at it again. This time, Apria Healthcare Group Inc. announced on October 15 it has purchased Coram Healthcare, a privately-held national provider of home infusion and specialty pharmaceutical services, for $350 million. Coram is a home healthcare company that provides factor, but is best known for its top notch home nursing services. Indeed, this shining reputation was one of many qualities which attracted Apria. The acquisition will create the leading, nationwide home infusion provider. A bigger attraction? Apria can now enter the specialty pharmacy market, which seems to be attracting everyone these days. This means they can benefit from Coram’s position as seller of factor in the hemophilia marketplace. Even insurance companies themselves are opening up their own specialty pharmacies, the very entities they reimburse!

As we’ve been predicting for the three years, there have been continued acquisitions as hemophilia home healthcare companies, whose profits are being squeezed by shrinking government and private insurance budgets, struggle to survive.

But both Coram and Apria view the acquisition positively. From the Coram website: “This is a transformative event for Apria Healthcare,” said Lawrence M. Higby, Chief Executive Officer of Apria Healthcare. “The transaction supports our strategy of diversifying our service offering by adding and expanding complementary product lines that fit well with our core competencies. In addition, this expansion makes Apria significantly less reliant on government reimbursement policies, since government payors will represent a smaller percentage of our overall business. As a leading provider in the home infusion industry, Coram has long been known for its patient care-focused reputation, clinical leadership and innovative programs which benefit patients, manufacturers, physicians and payors alike. We believe the combination will enable us to serve our combined patient and customer base even better.”

Good news for hemophilia patients of Coram: Coram’s current management team will stay in place to coordinate the integration of the two companies’ infusion businesses. This should ensure that the special needs of hemophilia patients are not left in inexperienced hands.

For more information, visit www.apria.com and www.coramhealthcare.com. And stay tuned for more mergers, which are sure to continue.

Great Book I just read: The Ghost Map, by Steven Johnson. This is the fascinating account of the cholera epidemic that hit London in 1854. The simple tossing of a soiled diaper by the mother of an infected infant into a local cesspool used by neighbors led to an epidemic that wiped out whole families in hours, hundreds in a matter of days, and thousands as the weeks dragged on. More than just a recording of this horrible event, author Johnson has the reader accompany Dr. John Snow, a physician of incredible brilliance and courage, as he bucks tremendous professional pressure and traditional medical wisdom that cholera is transmitted via air, and seeks to finds its true source, at a time in history when microbes were not even known.

Johnson skillfully shows how the explosive growth of cities reaped an environment ripe for bacterial disaster; London had 2 million people, and no public sewer system. With citizens emptying human waste directly into the Thames, the city’s water supply was tainted. But it took an incredible convergence of truth seekers, including John Snow, to fight the public health bureau, and discover the true source: the Broad Street pump.

Snow’s groundbreaking research and methods are still used today, and brought about a permanent change in our understanding of how infectious disease is spread. This is an amazing book! I learned so much, and can see that major cities in the developing world are not unlike London only 150 years ago. This simultaneously disturbs me, in this day and age, but also gives me hope for the exploding cities of the world like Mexico City, Delhi, and Dhaka. Johnson’s otherwise perfect book is marred only in his conclusion/epilogue, which gets unfocused as he tries to relate the story to every single contemporary event, in a preachy lecture. A+ content, B+ style.

Strange Ad about A New Hemophilia Product

Sewer rat genes… That’s the science behind a new clotting gel (TT-103MH) made by a company called Thrombotargets Corporation of Spain, a gel which apparently will be able to be used by people with hemophilia. I read about this in an ad in a recent BusinessWeek, as I flew to my meeting last week in New Orleans. Flipping through the pages, the word “hemophilia” caught my eye in a headline. You don’t often see hemophilia anywhere outside of our community, so I immediately read the ad.

The ad declares the FDA has given orphan drug status to this product. And the ad makes many amazing declarations that will raise eyebrows.

The ad is an amazing essay of misinformation. Apparently it is intended to attract investors who want to sink money into something revolutionary and biotechnical–but that doesn’t know its factor VIII from its elbow.

According to the ad, there has been “little scientific innovation in the area of blood coagulation in the past 40 years.” (I guess antihemophilic factor wasn’t anything revolutionary, right?) According to Thrombotargets’ president Dr. Pedreno, “there is no medicine for treating hemorrhages.”  And by using this product, a gel, a hemophilic child can “go play in the park, and if he falls down the hemorrhage can be stopped without having to go to the hospital for a transfusion.” Are they claiming the gel somehow stop internal joint bleeds? Head bleeds? Nothing is said about these bleeds.

And what about topical thrombin products, which have been around a long time and are used for circumcisions, dental work and topical wounds? Maybe I lost something in the Spanish to English translation.

Thrombotargets promises this product will change the lives of those with hemophilia, much like insulin did for diabetics. As we in hemophilia community already know, that was already done, many times over, by antihemophilic factor, then monoclonal AHF, then recombinant AHF–generations 1, 2, 3. If Thrombotargets is going to come to our markets, it had better know its customers. It will be amazed at hemophilia customers–but they don’t like misinformation or grandiose statements. They’ve suffered much too much to be hoodwinked by fast talk and false promises.

Thrombotargets predicts that they can make about $2.1 billion from this product–but I don’t think they will get much of that from the hemophilia community. We’re smart, educated, and dedicated to ever-safer, more convenient and technologically advanced clotting factor. I’ve spent the last 20 years educating hemophilia families, and am proud at how savvy and smart they are when it comes to choices about blood clotting medicine.

Thrombotargets is looking to license the drug with a US pharmaceutical company… let’s hope potential buyers are better at studying their markets than Thrombotargets.


Great Book I Just Read: Mayflower by Nathaniel Philbrick. This is a fascinating and amazing true story about the landing of the Pilgrims, and their hardships in Massachusetts. More than that, it reveals how the native Americans helped them, describes the first true Thanksgiving, and later, how descendants of both the Indians and Pilgrims led the communities to war, which devastated the Indian tribes and shaped the future of New England. Most surprising to learn was the complex, ever-changing relationship between Indians and Pilgrims; there are no bad guys here, just complex people and communities. As a New Englander, I learned so much about how our country was founded, and especially how my state was founded. Anyone interested in American history must read this. Philbrook is a gifted storyteller, and really did his homework. This is a New York Times bestseller and has won many awards. Enjoy it in time for your Thanksgiving!

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!)

Largest Ever Inhibitor Meeting

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!)

The Book is Back!

After a three year absence, “Raising a Child with Hemophilia,” edition 4, will soon be available to order. This newest version is even more consumer-friendly than the previous three versions, with charts, illustrations, tables, and two-color throughout. Thanks to your feedback, we’re including an index, so you can easily find the information you need by topic. And we’ve updated the quotations and stories by families, to include more recent ones with more relevant information. The insurance chapter became so daunting, with all that is happening to reimbursement, I divided it in two to make it more easily digested.

As always, this book is free of charge to parents of children with hemophilia and patients with hemophilia, HTCs, and hemophilia nonprofits. We are grateful to CSL Behring for the funding for this book. You can visit the section of our website to place orders, and to reserve your copy today! We will have the book ready by November 1, and debut it at NHF’s 59th Annual Meeting in Orlando. I’ll be signing books Thursday evening, November 1 and hope to see you there!

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