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Monday, May 30, 2016

Pulse on the Road in Sunny California

Speakers Michelle Rice, Kelly Lynn Gonzalez, Laurie Kelley
Warmer than the California sunshine was the greeting the Pulse on the Road speakers received when visiting Buena Park on May 13. Executive Director of the Hemophilia Foundation of Southern California Michelle Kim opened the Friday night event by welcoming the large audience, who had just finished a delicious meal, and introducing me, Michelle Rice (vice president public policy and stakeholder relations, NHF), Paul Clement (science editor, PEN), and Kelly Gonzalez, person with von Willebrand disease and mother of a child with the same.

See all photos from the event here.

Volunteers Patti Huerta, Linda Clement and
Randi DeSantis
Intro by Michelle Kim
The focus this time was on access to product choice. Michelle Rice opened the event by speaking about the many ways payers might choose to block choice of product—and why. Skyrocketing drug costs combined with a plethora of new biological drugs, and not just in hemophilia, are breaking the budgets of states and insurers. To contain costs, payers are looking for ways to streamline contracts with the various pharmaceutical companies. Payers might attempt to restrict brands under their formulary. This means you must read your formulary to see if your brand is covered. They also might attempt “step therapy,” which allows you to keep your brand, even if it is not on formulary, but only after you “fail” at the approved brand. What does fail mean? The drop fails to stop your bleeding. This approach seems quite risky for those with bleeding disorders.
My talk followed Michelle’s and I focused on what you need to know about product choice in order to challenge your payer to keep the drug you want. Kind of like a Hemophilia Products 101. We started with the basics: plasma-derived versus recombinant. Safety versus purity. First, second and third generation drugs. Prolonged half-life products. And what’s in the pipeline… and that was at once exciting and scary! You can see that if you are a payer, you will soon be deluged with new products. I asked the audience to guess how many factor VIII and IX drugs there are currently on the market. They replied, six? Ten? How about 24! And more to come.

The evening finished up with Kelly Gonzalez’s riveting take of how she took control of her own health care in the face of apathetic payers who did not understand VWD or her needs or that of her daughter. Kelly’s story is a model for anyone looking to achieve success in securing products and services. It’s dramatic, gut-wrenching and inspirational!

When we finished, we had the audience choose by applause where they’d like a donation from Pulse on the Road to go, and the Emergency Fund won. POTR gave $1,000 to the HFSC in recognition of its advocacy and great work for families. Michelle Kim has turned heads with her new leadership and we look forward to more great things from this vibrant chapter!

I recalled I first visited this chapter in 1992, where I first met Paul Clement and wife Linda, who are now my long-term dear friends, and also colleagues. Paul, as you may know, is an extraordinary writer and researcher for us at LA Kelley Communications. And I saw so many others I met here long ago. It was great to see everyone.

Thanks to Michelle and her team for hosting us; and thanks to Baxalta for supporting this event!

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