WASHINGTON—Pulling off the Rally for Medical Research (http://bit.ly/Rosenthal-April8) last month required some behind-the-scenes politicking on several levels to bring together diverse disease groups eager to make the united case to Congress that funding medical research through the National Institutes of Health should be a national priority.
The effort that included 205 organizations was initiated by the American Association for Cancer Research and held here during its Annual Meeting, although technically the meeting itself was suspended for about an hour and a half when its 18,000 attendees were encouraged to convene outside on the grounds of the Carnegie Library across the street from the Walter E. Washington Convention Center.
The actual number of those physically at the Rally differs from account to account, but AACR's best official guess was between 8,000 and 10,000 people, many of whom wore the white Rally T-shirts given out for free onsite. Grassroots events elsewhere were also held at Roswell Park Cancer Institute and City of Hope.
The Rally itself walked a political tightrope, including:
- Potential conflicts of interest for federal employees with NIH Director Francis Collins, MD, PhD, canceling his speech days before the event, and NCI employees being told they could attend only on their lunch hour or personal time (http://bit.ly/Rosenthal-April6);
- Gathering internal support from and within various cancer constituencies not always used to sharing platforms with one another and generally not with other disease groups;
- Convincing the non-cancer biomedical community that the event would not be cancer-centric.
There was even some concern that holding a political rally centered around federal funding issues might alienate some of the many international attendees at the AACR meeting who came for the science and were not affected by NIH budget cuts. However, totally anecdotally, I spoke with one distinguished European physician-scientist who bragged that he not only attended the Rally but proudly wore the T-shirt throughout the day.
But the prevailing wisdom seemed to be that when appealing to members of Congress, presenting a united disease front would be most effective—and once certain groups got onboard, it became more difficult for others to decline participation.
The Rally's genesis can be traced back nearly a year following AACR's 2012 annual meeting in Chicago when the association's leadership decided that the funding crisis was emerging as the number one priority.
When AACR's program-planning committee met last summer to discuss this year's annual meeting, which would be held in the nation's capital, the idea was floated about having some type of rally for medical research.
According to sources, a number of issues arose:
- Should the Rally include a march to Capitol Hill?
- What would shutting down the meeting mean—in general, to international attendees, to exhibitors?
- Should the Rally focus on cancer research or broader medical research?
- Who else should be involved?
After discussions, the leadership decided that it would not be feasible to relocate those rallying to Capitol Hill; that the meeting would be preempted only for a short time; and that rather than focusing just on cancer research, the Rally should be all-inclusive.
Then in January some 40 groups across the disease spectrum met in a Washington hotel and AACR alerted them that the association was looking for partner organizations to contribute time and constituents to the effort as well as funds, which averaged about $5,000 for those that gave.
American Heart Association
Sue Nelson, the American Heart Association's Vice President of Federal Advocacy, told me during a phone interview a week following the Rally that she had been contacted in December about plans for the Rally by Jon Retzlaff, Managing Director of AACR's Office of Science Policy and Government Affairs: “Jon and I had worked together for many years, and when he says something will get done, it gets done,” she said, noting that AHA had talked about holding rallies for years but wasn't certain about how to get researchers, survivors, and advocates into town at the same time.
“But by coincidence AHA's Lobby Day was scheduled immediately after the Rally date, April 8, with training taking place on the 9th and the visits to Congressional offices on the 10th, so the timing was perfect.”
Nelson said the Heart Association then had to figure out how to sell the idea within its organization and convince its members that the event would not be focused on cancer.
“As it turned out, they loved the idea, and many of the survivors told me the Rally was one of the highlights of their trip to DC,” she said, adding that AHA had some 300 people from 43 states involved in 251 meetings on Capitol Hill, and that the association is grateful to AACR for sharing its resources with the rest of the community.
She also said that immediately after our interview she would be attending a meeting organized by Research!America to discuss how the medical research community could follow up on the effort of the Rally.
“We have to work together in this fiscal environment. You have to provide a united front [to Congress when discussing funding for medical research]. We can't pick and choose the science—that's what NIH is about,” she said.
AACR Follow-Up Plans
I also spoke with AACR CEO Margaret Foti, PhD, about what would happen post-Rally.
Although she had announced at a reception after the event that AACR and Research!America planned “to keep the effort going beyond today,” she said during our interview that further plans would depend on input from all 205 partner organizations, and that AACR would be sending out a survey later this month to assess “what worked, what could have been done better, and where do we go from here?”
She emphasized solidarity among all the organizations and said: “We want to make sure that however it goes forward, it is the collective opinion of all of the steering committee members and has the recommendation of the full group.”
In addition to AACR, the steering committee consists of representatives from:
- amfAR, the Foundation for AIDS Research;
- Association of American Cancer Institutes;
- Association of American Universities United for Medical Research;
- Coalition for the Life Sciences;
- Population Association of America;
- American Diabetes Association;
- Leaders Engaged on Alzheimer's Disease;
- American Heart Association;
- Association of American Medical Colleges Ad Hoc for Medical Research Funding;
- Association of Public and Land-Grant Universities;
- Consortium of Social Science Associations;
- Infectious Diseases Society of America;
However, from a sampling of news releases from various member organizations that I received prior to the Rally, it seemed that not all participating organizations provided full context or credit for the event.
For example, although the American Society of Hematology referred to AACR in its Rally release, there was no mention of AACR's role or its annual meeting anywhere in two media advisories issued by the American Society of Clinical Oncology, and the Society for Immunotherapy of Cancer not only neglected to mention AACR but mistakenly stated that there were more than “18,000 in attendance to support increased funding for biomedical research,” which was the number of total attendees at the AACR meeting, not the number of those at the rally.© 2013 Lippincott Williams & Wilkins, Inc.
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