Below are Highlights in Pictures,
A personal photo journal by IMFer Michael Katz
Almost 300 advocates came to Washington DC
to bring our message to Congress on behalf of all blood cancers.
Advocates were seated at tables arranged by
state to allow for planning of visits to Capitol Hill later in the
day. IMFers Sherry and "Bubs" Tamlyn were
there bright and early in anticipation of a busy day.
Wyndham Wilson of the National Cancer
Institute explained the PRG process, which is used for setting NCI
research priorities. Dr. Wilson also reviewed specific elements of
the Leukemia, Lymphoma, Myeloma (LLM) PRG report, which is the focus of
Advocacy Day efforts.
Sandra Horning, chair of the Eastern
Cooperative Oncology Group Lymphoma Committee and co-chair of the (LLM)
PRG Clinical Trials Working Group, discusses the PRG with Dr. Wilson as the group broke for lunch.
Meanwhile, just down the hall, 300 hungry
advocates braved the buffet line to take on fuel.
The group was addressed by the
Honorable Deborah Pryce (R-Ohio) who is co-chair of the House Cancer
Caucus. She is a woman clearly committed to helping cancer patients
and funding research for better treatment and cures. She is also
working furiously to pass legislation to secure Medicare coverage for oral
anti-cancer agents. She was enthusiastically received by the group
and received a thunderous ovation.
IMFers (left to right) Jerra
Barrit, Mark Fisch, Michael Katz, Arissa Cunningham (of Ortho Biotech)
strategized at one of the New York tables before heading off to Capitol
Hill. We were given a briefing and written materials, along with
leave-behinds to give to the Congressional staff.
IMFer Michael Katz joined with
fellow Queens/Nassau County residents Donald and Bette Stein to
visit Rep. Gary Ackerman of New York. Our group caught the Congressman
just as he was running out to participate in a number of critical
votes. We were able to chat briefly with the Congressman and then
spent time with one of his staff, reviewing the Advocacy Day issues.
From there, it was off to see New York
Senator Schumer. Senator Schumer met with the large
group of New Yorkers out in the hallway because there was no room
in his office big enough to accommodate our group.
You can see how the
senator took the time to speak with individual members of the group.
Then, it was off to Senator
Hillary Clinton's office. When we arrived, we were told that Senator
Schumer's office had called ahead to warn them that a large group was on
the way. The Senator was apparently involved in a number of other
meetings so we met with one of her health staffers, Megan Thompson, in, of
all places, the Senate coffee shop, there not being anywhere we could find
to seat the large group. Many of our group skipped the group photo
on the Capitol Steps. Those of you who've visited DC in the summer
will understand our reluctance to venture back outside into the steam
Next up was a congressional reception hosted
by the LLM ACT. This was truly an exciting gathering.
Our group was addressed by Senator Kay Bailey Hutchison..
senator is one of the prime movers behind the LLM Senate hearing and she
announced plans to introduce legislation to obtain $250 milllion in
funding for research into blood cancers and another $25 million for
education and training.
Our group got to meet the senator (left) and
her brother, Allan Bailey (left), who has myeloma.
IMFers and other advocates got a chance to
relax after a long day on the Hill, chow down on snacks and re-hydrate
with a variety of fluids.
Shown on the left is IMFer Alan Jacobson
doing just that.
On the right is IMFer Carol Wickwire, enjoying a light
moment with the author (Michael Katz).
The crowd was large and enthusiastic.
IMF board member Dr. Ken Anderson discussed his testimony with people at the reception, as did MMRF
President Kathy Giusti, who was also set to testify in the morning.
IMFers Michael & Robin Touhy and Kathy Baker were also in
attendance, struggling to keep energy levels up after a long day hiking
all over Capitol Hill.
returned to the podium to introduce a number of her colleagues who had
come to show their support.
Senator Hutchison and her brother spoke with
Celgene CEO John Jackson and Eilene Finnegan.
Joining us and speaking about their
commitment to cancer legislation were Senator Sam Brownback,
and Phil Crane (Rep-IL)
The next morning, the LLM ACT
group turned out early to queue up for seats at the hearing. Unfortunately, the hearing had been moved to a smaller room and there was
a real question as to how many of us would get in.
Rumors flowed about the number of
seats available. Guards threatened to eject us from the building if
we didn't stop chattering (cancer advocates are a talkative lot!)
Richard Klausner, director of the National Cancer Institute,
stopped to chat as he made his way into the hearing room .
Marilyn Hornstein and Kathy Lebkeucher waited in style on hard plastic
The hearing began as an estimated
300 people stood waiting in the hall. Watching a C-SPAN replay of
the beginning of the hearing, I learned that Senator Harkin had
informed the hearing that we were all out in the hall waiting and that he
was going to try and let as many as possible in, even if it meant seating
us on the floor or up on the dais.
So, in we came, and came and
came, until the hearing room was packed to the gills (left). I wound
up standing against a side wall for the two and one half hours, no easy
feat given the state of some areas of my skeleton.
IMFers Don and Bette Stein wound
up sitting just behind Senators Hutchison, Murray and Harkin on the
Senator Hutchison announced her intention to introduce
legislation to fund $250 million in blood cancer research as well as
another $25 million for blood cancer education.
hearing proceeded apace, first focusing on Dr. Klausner's testimony, the a
panel of leukemia and lymphoma advocates and scientists. Myeloma
received a tremendous amount of attention, even before the panel myeloma
witnesses began their testimony. Geraldine Ferarro (left).
Ferraro is obviously beloved by her former congressional colleagues, like
Senator Mikulski (lef), was clearly the star witness. Other
myeloma witnesses included MMRF President Kathy Giusti and Dr. Ken
Anderson. This was a wonderful day for everyone battling
myeloma. We can only hope that the wonderful words we heard at the
hearing will turn into tangible new funding and that this funding will
lead to more breakthroughs so that we can either cure myeloma or turn it
into a non-fatal, treatable chronic disease.