For more info: nava.baxter.com
I just wrote a couple of weeks ago about long acting factor: Biogen Idec’s clinical studies have been in the works for a while, and CSL Behring just announced that they are starting a global phase II/III, multi-center study.
On January 5, Baxter announced that they are launching a Phase I clinical study of “BAX 855,” a longer-acting (PEGylated) form of a full-length recombinant factor VIII (rFVIII) protein, based on Advate’s manufacturing process. BAX 855 leverages Nektar Therapeutics’ proprietary PEGylation technology, which is designed to extend the duration of activity of proteins and larger molecules.
This means, if the trials go as hoped, longer acting factor in the bloodstream, requiring fewer infusions to get the job done.
So that’s three companies in clinical trials for longer-acting factor! More great news for our children’s future.
Great Book I Just Read
Born to Run by Christopher McDougall (Kindle version)
Stymied by a nagging injury, McDougall questions his doctors, and sets out to find a way to continue running, which leads him to the Tarahumara Indians in Mexico’s deadly Copper Canyons. These people living in near isolation, are able to run hundreds of miles without rest or injury. McDougall shares his adventure of traveling to meet them, interspersing chapters with the history of ultra running and introduces all its quirky characters, the history of the Tarahumara, and making a good case for running barefoot! The book has stirred some controversy–has he done a disservice to the Tarahumara, ruined Nike’s reputation and exalted barefoot running without citing his studies? Whatever he has done, it is a joy to read due to his crackling style, which is witty, colorful, funny and has great cultural references–this guy knows how to write! I’m not sure I buy everything he’s selling, but I did go running today, and loved it. Three star/four.
Making sense of insurance reform was the theme Saturday morning at the launch of our new program, “Pulse On The Road,” at the Indiana Hemophilia Foundation’s annual meeting. (Photo: HFI Executive Director Andrew Van Gordon)
With funding from Baxter BioScience, we brought expert speakers from several states to present stories, scenarios and solutions to an audience of 100 families. The idea is to bring to life our newsletter Pulse, which you can download here.
We started off the morning with Martin Addie, a man with hemophilia from Missouri, who shared his many trials trying to get health insurance. Martin had called me last year, asking for suggestions, and I learned that he is one person who did everything right, tapped every resource, documented everything, and yet he still could not get help with his dwindling insurance. You can read about his entire story in Pulse, but I can tell you the audience was struck by his determination and even more by his faith.
Next was Andy Matthews, a long time friend of mine. In the 16 years I’ve known Andy, I’ve actually never heard him speak and never knew he was such a motivational speaker. He focused on teens transitioning into adults, and what we can do as parents to encourage them to take control of their insurance and health.
Then came former executive director of HFI Michelle Rice, how gave a great overview of health care reform, along with dates when certain parts will be enacted. This was then followed by our “Community Forum,” with four panelists: Michelle Rice, now a regional director with NHF; Kisa Carter, Public Policy Director, HFA; Mike Bradley, Vice President, Healthcare Economics and Reimbursement, Baxter BioScience; and Judy Moore, social worker with Indiana Hemophilia and Thrombosis Center.
There was no shortage of questions posed to the panelists and the Q&A went for 50 minutes, and could have gone longer. Audience members wanted to know why we have to wait till 2014 for implementation of some parts of the healthcare reform bill; where can they go for more answers; will out-of pocket costs rise? All great questions.
After lunch we had a Meet the Expert table where folks could come and speak one-to-one with the panelists and speakers.
Next stop? Washington DC October 23, where we will present Pulse On The Road at the Hemophilia of the Capital Area’s annual meeting. Then look for POTR next year, perhaps coming to your state! In the meantime, keep reading about insurance and healthcare reform. Visit www.hemophilia.org and www.hemophiliafed.org for up-to-date information from your national hemophilia organizations.
Thanks to Baxter BioScience for funding this event, which received excellent reviews from the attendees! (Photo: Laurie and Kisa; Laurie with Carlita and Vanessa)
(Professional photos by Markey’s Rental and Staging)
Interesting Book I Just Read
The Time Traveler’s Wife
This book was a gift from a friend, who thinks I time traveling when I jaunt off to developing countries. A sci-fi book that reads like a romance novel, about a man who can time travel (no explanation given) back to his own past, and even meets himself as a boy. More importantly, he meets his future wife when she is just a little girl. The story is compelling, and I confess I read all 500 words on a train ride to London, then on a 7 hour plane ride home. I couldn’t put it down! The writing style is very light, rather dry (but then, I had just finished Lord Jim by Joseph Conrad; gorgeous writing). This is like English fast food: yummy, filling, but not going to nourish your writing abilities or appreciation of the written English language. Still, there is a lot to say for fast food, especially when you tire of full course meals that you must digest slowly (like Conrad). A book about love, loss and patience; worth reading for relaxation. Two stars.