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June, 2001 Senate Hearing on Blood Cancer Research: A personal photo journal
By Michael Katz
06.22.01
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 bath.

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..

The 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.

The Senator 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,
Marge Roukema (Rep-NJ),

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!)

Dr Richard Klausner, director of the National Cancer Institute, stopped to chat as he made his way into the hearing room .

IMFers Marilyn Hornstein and Kathy Lebkeucher waited in style on hard plastic chairs (right).

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 dais.

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.

The 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).

Ms 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.


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