Hemophilia Foundation of Southern California

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!

With a Little Help from My (Hemophilia) Friends

While I’m on vaction this week, please enjoy this fascinating bit of hemophilia rock trivia from our colleague Richard Atwood of North Carolina!

During their 1964 tour of America, the Beatles
stayed in Los Angeles for five days. The band rented a mansion at 356 St.
Pierre Road in the Hidden Hills neighborhood of Bel Air. They held a sold-out
concert on Saturday, August 23 for almost 19,000 paying fans seated inside the
Hollywood Bowl, plus another 10-15,000 gate-crashers in the trees outside the
amphitheater. Capitol Records planned to record the live concert but the
continual shrieking by the audience prevented a good sound recording. After
their performance, the band members partied until dawn at their gated house
with about 30 starlets, including Peggy Lipton, Joan Baez, Billy Preston, and
Ray Hildebrand and Jill Jackson (known as Paul and Paula).
Then on Sunday afternoon, Brian Epstein and the Beatles attended
a charity garden party hosted by Alan Livingston, the president of Capitol
Records, in the Brentwood backyard of Livingston’s mother-in-law. The party was a fundraiser for the
Hemophilia Foundation of Southern California. Livingston’s wife, the actress Nancy Olson, was a foundation board
member. Hollywood celebrities were charged $25 each to bring their children.
This event, held on August 24, 1964, raised $10,000.
“At the
party, Livingston went to great lengths to accommodate the Beatles, who, after
being cold-shouldered by the label, had rocketed Capitol’s profits into stratosphere. No expense had been spared to
stage a Hollywood-style spectacular. A festive striped tent had been set up in
the spacious backyard, where vendors dispensed soft ice cream and lemonade to a
litter of gorgeously groomed children. There were pony rides and games.
Security was unparalleled, befitting a presidential visit, with a fully armed
riot squad stashed in the garage, just in case. The guest list was a who’s who of local dignitaries,
complete with a selection of hand-picked celebrities, each of whom was required
by the hosts to bring a child: Edward G. Robinson had in tow his granddaughter,
Francesa; Lloyd Bridges, his son Jeff; Rita Hayworth, her daughter, Princess
Yasmin Khan; Donald O’Connor,
his son, Freddy, and daughter, Alicia; Jack Palance, his daughter, Holly; Eva
Marie Saint, her son Darrell, and daughter, Laurie; Barbara Rush, her son
Christopher; Jeanne Martin brought five of Dean’s children a few feet in front of Jerry Lewis, who bolted as
soon as he saw them, leaving his son, Gary, behind rather than risk an
encounter with his estranged partner.”
(pp. 527-528).
The Beatles were not impressed with the fundraiser. “We saw a couple of film stars,” John [Lennon] relented, but
added: “We were expecting
to see more.” (p. 528).
Richard writes: The hemophilia fundraiser was just a minor event
in the definitive biography of the Beatles. Captured on news footage and
reported by Saul Halpert, the hemophilia fundraising event has since been
posted on YouTube. Other celebrity guests who reportedly attended but were not
recognized in the biography included John Forsyth; Groucho Marx; Jack Benny;
Jack Lemmon; Rock Hudson; Dean Martin; Richard Chamberlain; Hayley Mills;
Shelly Winters; Hollywood columnist Hedda Hopper; Los Angeles mayor Sam Yorty,
his wife, and his son, Bill; and Kenneth Hahn with his daughter, Janice. A
multitude of teenage fans and press reporters remained outside the mansion
gates that Sunday afternoon. 

From Bob Spitz, 2005, The Beatles: The Biography. New York, NY: Little, Brown and Company. 984 pages.The 984-page biography of the band includes 32 pages of photographs, 4 pages for Acknowledgments, 87 pages for Notes, 11 pages for a Bibliography, 3 pages for a Discography, and 21 pages for an Index. The author lives in Connecticut.
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