March 2007

A Behemoth is Born

CVS bought Caremark Rx. Read this carefully: Caremark has been sold. More predictions come true, and the rapid acquisitions of specialty pharmacies continue at a dazzling level.

Caremark Rx, Inc., located in Nashville, Tennesee, is the nation’s second-largest PBM. Caremark Rx has recently approved a $27 billion takeover by CVS. The acquisition has created a behemoth with the power to define, redefine, and direct the nation’s pharmacy distribution system. CVS/Caremark will have combined sales of more than $80 billion and rank among the top 20 Fortune 500 companies. Express Scripts, the number three PBM in the country, attempted a hostile takeover of Caremark in 2006. What will Express Scripts do next? Who might they purchase instead?

It can’t be stressed more strongly: Hemophilia patients must follow the rapidly changing acquisitions to know where their health benefits and service will originate, how this will affect their treatment and care, and where their health dollars will be going. For now, it looks like a lot of healthcare dollars will go to Wall Street.

Passing of a Young Visionary

I learned this weekend of the passing of a young visionary in our community, Cindy Neveu. Cindy was founder of Shemophilia, a nonprofit for women with hemophilia and other rare bleeding disorders, She was known worldwide for her educational work. You may have met Cindy at any one of a dozen events through the years: at NHF meetings, or local chapter meetings. She was often in a wheelchair but always a bright and active person.

Cindy’s family requested no flowers for her sevice, but instead a gift to one of the her favorite charities:

Heifer Project International
1 World Ave
Little Rock, AR 72202

Friends of Fairmont Animal Shelter
2700 Fairmont Drive
San Leandro, CA 94578

Zion Lutheran School
5201 Park Blvd
Piedmont, CA 94611

Cindy was also the sponsor of a young boy in India with hemophilia, through my nonprofit, Save One Life. If you are reading this and you’d like to become the sponsor of Cindy’s young boy, in her name, please contact me at

You can send messages of condolences to her parents:
Carol & Marvin Neveu
4470 Pleasant Valley Ct.
Oakland, CA 94611

Thanks to Jill Lathrop for sending word of this so quickly to the community. Cindy, we will miss you.

AmeriCares and Project SHARE

We had a wonderful visit on Friday with AmeriCares, a large nonprofit that donates medicine to the developing world. Nestled in the quaint New England city of Stamford, Connecticut, AmeriCares is a world class organization on a mission dear to our heart: bridging the gap between the haves and have-nots through donations of life-saving medicine.

We’ve worked with AmeriCares for many years, but have never visited its facility. We were greeted warmly, and had a fascinating tour of the warehouse, which stocks donated biologics and pharmaceuticals from many companies. We learned about their operations, and noted the framed display of many presidential letters of gratitude and congratulations for its emergency international relief work, dating back to the Nixon era. Founded by Bob Macauley 25 years ago, after he helped to rescue Vietnamese orphans following a harrowing plane crash in Saigon in 1975, AmeriCares is now recognized as a leader in humanitarian shipments of medicine.

In the US, Project SHARE is recognized as a leader in donated factor: 9.7 million units in 2006 to 45 countries, representing about $9.6 million. Not bad for a company with 2.5 employees! As AmeriCares also receives donated factor from Baxter, we team together to share information on requests, recipients and operations, so there is no wastage or overlap. Since 1990, AmeriCares has received an astounding $99.3 million in products from Baxter! We were thrilled to meet our fellow teammates, and to wish them well on their first trip to Romania this coming week. There, they will meet all the doctors who treat hemophilia patients, who we also work closely with.

Eastern European Program Manager Jim O’Brian and I were surprised and delighted to learn we are both alumni of the Fletcher School of Law and Diplomacy! Not very often you bump into someone from that international program at Tufts University.

Project SHARE director Julia Long and I are proud to work with AmeriCares, to bring more medicine and better care to those in poverty and in medical need. For more information, see

Inhibitor Summits 2007

Many people have been asking us about the Inhibitor Summit meetings that were so successful and useful in 2006. They are now scheduled in 2007. Sponsored by Novo Nordisk, these are really the only meetings that are truly addressing the need of patients with inhibitors. Here’s the schedule:

May 18-19 Nashville, TN
July 20-21 San Diego, CA
October 5-6 Dallas, TX

For more information, visit or email us, and we’ll update you. If you are a family or patient with inhibitors, you may qualify for free airfare and hotel! I’ll also be attending and look forward to seeing you there!

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