Blog Archive

Monday, March 10, 2008

Brainstorming in Naples


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 prohylaxis 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.

Whiel I cannot share the topics we discussed, I can say that these opportuities are golden to learn and to give feedback. If anyone is offered the chance to serve on any manufacturer, HTC or homecare 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.

1 comment :

Anonymous said...

hi Laurie! i have just tried to send you my "book" comment but something happened in the way and puff...I have to persevere and write again! :) i loved your posts on your different trips, your experience as a traveller who shares love and knowledge to all people and families with hemophilia...you are an inspiration for all of us :) As for the movies (i love movies) i will try to see it and then tell you. Yesterday I saw with my girls, "The Last King of Scotland." Amin Dada's terrible wound was not to have accepted and loved his black identity. He spit on his own; the methods he used were not of true Ugandans but of someone who out of context attacks his own Self. Nothing worse than wanting to be someone we are not. Bloody movie. See you--hug. PS: by the way did you know that octopus in Japanese is ...ika?! :) Ica

 
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