On June 21-22, undaunted by the sweltering heat or the momentous task, the IMF, along with 14 other organizations, converged in the nation?s capital to participate in the Joint Advocacy Day for Blood Cancers. Their collective voice was enthusiastic, their mission well focused ? to raise awareness of the crucial need for more access to promising new treatments and to increase research funding for hematological cancers.
Energizing the Coalition
Some 300 advocates from across the United States gathered on the morning of day 1 for a strategy workshop. Seated according to state of origin, but unified in purpose, the room quickly took on the feel of an army organizing for battle. As the session began, a common thread linked the advocates?everyone was eager to head for Capitol Hill and face-off with their congressional representatives.
Outfitted with resource packages, the advocates traded stories over coffee as Elizabeth Goss, of the powerhouse Washington-based law firm Bennett, Turner, & Coleman, LLP, reviewed the essentials of effective advocacy. Although Ms. Goss elucidated a point-by-point strategy on how to advocate in the most telling and succinct fashion, she continually reiterated her most salient point: "Your personal stories are the best way to influence the representative. Your story puts a face on these diseases that desperately need more research funding and more clinical trials. You are the expert on where we are and where we have to go in the fight to conquer blood cancers. So relax, be yourself, and don?t hold back."
Turn a Wish List Into a Plan
The axiom ?knowledge is power? reverberated through the room as Wyndham Wilson, M.D., Ph.D., took to the lectern and eloquently explained the intricacies and mission of the Leukemia, Lymphoma, and Myeloma Progress Review Group (LLM-PRG) that convened in 2000 to evaluate the current status of the National Cancer Institute (NCI) research program on hematological cancers and to make recommendations for the future of the program.
Dr. Wilson noted that the PRG strongly recommends that NCI increase its efforts to fully understand the biology of hematological cancers and the interaction of genetic factors in blood-related cancers as well as enhancing its programs to identify molecular targets for new treatments. He also laid out an ambitious goal ? reducing the time it currently takes for new compounds to reach patients from 7-8 years to 2 years.
"It is important to turn your wish list into a plan. There are many different types of cancers and each one has a body politic of patients advocating for funds. Given that reality, it is essential to have a cogent plan of action in order to encourage NCI to prioritize blood cancers," Dr. Wilson pointed out. He also emphasized the importance of having the facts at your disposal. Understand, numbers resonate in Congress: In 2001, more than 110,000 Americans will be diagnosed with hematological cancers and more than 60,000 will die of these diseases. Moreover, approximately 700,000 Americans are currently living with blood cancers; taken together, blood cancers represent the fourth most common malignancy. And that translates into a lot of votes.
IMF and Others Urge Congress to Pass Two Bills
The development of Gleevec (STI-571), a new treatment that has shown remarkable results in chronic myelogenous leukemia (CML), is an example of the enormous strides that can be made in the fight against blood cancers if clinical research is properly funded. But even though a promising drug like Gleevec engenders optimism, Dr. Wilson was quick to assert that the political machine left unchecked can, in an effort to be cost-effective, unwittingly deter access to important treatment. Unfortunately, Gleevec, like many of the new oral compounds coming out of the lab, will not be covered by Medicare since only oral drugs that share an injectable equivalent are reimbursed. "Obviously, substantive changes are needed in the program," he said.
The group refused to let some political hurdles take the wind out of their sails. They gave a rousing welcome to one of the true champions in the war against cancer, the Honorable Deborah Pryce (R-OH), member of the House Cancer Caucus. Representative Pryce reaffirmed her commitment to cancer research and then spoke briefly about two very important pieces of legislature that she has sponsored: HR 1624, which guarantees Medicare reimbursement for new oral anti-cancer drugs, and HR 967, which removes barriers and creates access to cancer clinical trials.
"It?s crucial that your elected officials hear a loud and clear message from cancer advocates that you want them to enact both of these bills," she said. During the question and answer session that followed her address, it was apparent that this group of advocates had not trekked to the nation?s capital to be awed into meekness by the towering halls of Congress.
Off to Capitol Hill
Fortified by a hardy lunch, the advocates set off by cab and on foot for the Hill to lobby their respective legislators for the initiatives they had mapped out in the morning?s strategy meetings. IMFer Michael Katz teamed with fellow advocates, Donald and Bette Stein, in search of Rep. Gary Ackerman (D-NY). They caught up with the busy Congressman as he was dashing off to vote on several important pieces of legislation. Although their time with Ackerman was brief, the Advocacy Day issues they presented appeared to hit home. Bigger game, however, was waiting down the hallway.
Later, a group of about 25 advocates made their way toward the office of Washington heavyweight, Sen. Charles Schumer (D-NY). The group was originally scheduled to meet with a staff member, but to their delight they came face-to-face with the Senior Senator himself. Due to the number of advocates, the meeting took place in the hallway outside his office.
According to advocate Michael Katz, the Senator was very receptive as the group urged him to support funding for the recommendations of the PRG on blood cancers. "We stressed the importance of bringing the most recent scientific discoveries as quickly as possible to the clinic. We also talked about the significance of access to clinical trials and Medicare funding for oral anti-cancer drugs like thalidomide and Gleevec. Senator Schumer pledged his support for the lion?s share of what we discussed. All in all, it was an encouraging experience," said Mr. Katz.
After a long day on the Hill, the IMFers, along with the other advocate groups, gathered for a congressional reception. A buffet dinner of tasty, light fare was a welcomed sight after the busy day. Plates and drinks in hand, the room buzzed as the advocates exchanged anecdotes about their experiences on the Hill. In a word, the atmosphere in the reception was? Electric.
Even though food, drink, and lively conversations set the evening?s tone, some of the leading voices in the battle to increase cancer research funding took the opportunity to step up to the lectern and address the captive audience. Senator Kay Bailey Hutchison (R-TX), one of the prime forces behind the LLM senate hearing that was taking place the next morning, announced her plans to introduce legislation to obtain $250 million for research in blood cancers and an additional $25 million allocated for education and training.
Among the other speakers was IMF board member Dr. Ken Anderson and MMRF president, Kathy Guisti, both of whom were scheduled to testify at the LLM hearing. As they shared their perspective on the continuing battle to increase spending and awareness, several Washington notables took up the microphone to announce their personal commitment to cancer legislation: Sen. Sam Brownback (R-KS), Rep. Marge Roukema (R-NJ), and Rep. Phil Crane (R-IL). As the reception finally began to wind down, the advocates were forewarned?tomorrow?s hearing is going to be a standing-room only affair so get there early.
First-Ever Hearing on Blood Cancers
The hearing was scheduled for 9:30AM in the Dirksen Senate Building. By 7:00AM a line of advocates had already begun to build. Within an hour it was obvious that the hearing room was not large enough to accommodate the feisty group, who were warned several times by Senate guards to lower the volume of chatter. Three-deep, snaking down the marble corridor, the advocates waited and watched as the first speakers arrived and made their way past the camera crews and reporters. Finally, the imposing oak doors swung open.
Chaired by Senator Arlen Specter (R-PA), the Appropriations Subcommittee on Labor, Health and Human Services and Education hearing on Hematological Cancer Research kicked off right on time. However, a moment into the hearing, as the first panel was readying their testimony, it was noted that a hundred or so advocates were still waiting in the hall; some of the patient/advocates, clearly exhausted by the ordeal, were seated in hard plastic chairs or leaning against the wall.
As the leukemia panel began its testimony, co-Chair, Senator Tom Harkin (D-IA), had committee aids quietly begin to usher in people who were lined in the hall. Sensitive to the fact that most were patients ? some had traveled 3,000 miles to attend ? the Senator kept the process going, lining the advocates along the walls and even seating them on every available space on the floor. By the time the first panel had concluded, the visual effect of the jam-packed room was inspiring.
Much of the testimony centered on the need to increase funding for research. Dr. Richard Klausner, director of the National Cancer Institute, along with other scientists and advocates, gave compelling testimony of the crucial need for more research and greater access to clinical trials. During the question and answer period, the Senators asked for and got the bottom-line rationale of how a deadly disease like myeloma can be transformed into a non-fatal and manageable chronic condition.
Myeloma Panel Stirs the Air
Multiple myeloma is an equal opportunity disease that strikes randomly throughout our population, most often without the early warning signs that are present in many cancers. Perhaps the morning?s most dramatic testimony came from the myeloma panel and the much-anticipated appearance of the Honorable Geraldine Ferarro, who recently disclosed that she is battling multiple myeloma.
Ms. Ferarro?s account of the serendipitous discovery of her myeloma during a yearly physical highlighted one of the main problems with the disease ? many patients are free of symptoms and are diagnosed simply by chance. "This mysterious aspect of myeloma is another reason that more dollars are needed to develop screening methods with proven benefit so patients have a chance for early detection," she intoned. Ms. Ferarro also, during her poignant and colorful testimony, described how her treatment with the drug thalidomide had pushed her myeloma into remission, allowing her quality time for work and family.
She pointed out that ironically, thalidomide, like Gleevec, is administered orally and has no injectable equivalent and is therefore not covered by Medicare. Around the dais, her friends and former colleagues from Congress, visibly moved by her story, pledged their support, which elicited explosions of enthusiastic applause from the room.
Other myeloma witnesses included MMRF president, Kathy Guisti, and IMF Board member, Dr. Ken Anderson. Kathy Guisti emphatically made the point that without proper awareness and funding, multiple myeloma, because its incidence is far less than breast or colon cancer, will be treated "like a stepchild" by drug companies looking to maximize their sales. She added that only public awareness and acts of Congress could change that mindset and ultimately save American lives.
In closing, the atmosphere was one of optimism and renewed determination. The messages were clearly and passionately enunciated. The Senators and Representatives who will soon take to the floor of Congress to fight for more blood cancer funding were outwardly impressed by what they saw and heard. Especially when Senator Specter, renowned for his good-intentioned impatience, asked when we could expect to see a cure for blood cancers. The answer he received was a firm-voiced prediction: "If we get adequate research funding, 10 years." The Senator nodded. That was what he wanted to hear. The prediction brought the house down, deservedly so.