Compelling stories and tireless campaigning are the secrets to successful healthcare lobbying, according to the team at Debbie’s Dream Foundation: Curing Stomach Cancer (DDF).
The patient advocacy group, founded by Debbie Zelman in 2009 following her stage 4 stomach cancer diagnosis, is gearing up for its seventh annual lobby day. To be held in February, it will see patients and caregivers from all over the United States descend on Washington, DC to raise awareness and educate lawmakers.
Andrea Eidelman, Executive Director at DDF, said they would like as many people as possible to take part:
“The more impactful and powerful patient stories we have the better. These are the stories that need to be told so that lawmakers can put faces to the statistics.”
This year, the Foundation is offering “scholarships” to cover the expenses of advocates who would like to take part but are constrained by finances.
Andrea said the group wants to remove as many barriers to participation as possible.
“As intimidating as going to meet your representatives in Washington, DC might sound, we do everything we can to try to make people feel comfortable with meeting lawmakers,” she said, highlighting that the Foundation provided training and materials.
Advocates for the Foundation work tirelessly to keep stomach cancer on the agenda – particularly following an election when there is a need to “cultivate new champions” through education, she added.
Part of that is the lobby day, registration for which is now open.
Camille Bonta, Policy Consultant at Summit Health Care Consulting, who has been working with the organization since its first lobby day in 2013, said the initiative has come a long way since then.
“That first year, we were trying to find our feet and figure out the pathway to our goal of more funding for stomach cancer research,” she said.
Since then, the group has successfully advocated getting stomach cancer research included in the Department of Defense’s Peer-Reviewed Cancer Research Program – a move that has so far resulted in $16 million of research funding.
Part of the argument for inclusion is based on the risk of servicemen and women contracting H. pylori infection, a known stomach cancer risk factor, while serving overseas.
“Going to Capitol Hill with a compelling story is tremendously important,” said Camille, explaining how a young ex-servicewoman had developed stomach cancer after picking up the infection while serving in Japan.
“Because of her young age she was misdiagnosed, and when it was eventually diagnosed, it was stage 3B with a 14% chance of survival. The mother of young children, she went to Capitol Hill to tell lawmakers that she had served her country and lacked good treatment options for a disease connected with her service.”
Governmental spending priorities change all the time, elections mean lawmakers change, and the list of cancers included on the Department of Defense’s list is updated every year.
“Once a disease gets put into the program, it doesn’t guarantee it will stay there. Congress dictates which cancers get included and peer-review decides what research gets funded” said Camille. “We can never take for granted that because stomach cancer is in the program one year, it will be there the next.”
She added that the Foundation also “weighs in” on other policy issues, both as an individual organization and as part of lobbying coalitions such as One Voice Against Cancer and the Deadliest Cancers Coalition.
For more information on DDF and the 7th Annual DDF Capitol Hill Stomach Cancer Advocacy Day, go to https://debbiesdream.org/
Main image: Debbie’s Dream Foundation advocates on Capitol Hill during the 6th Annual DDF Capitol Hill Stomach Cancer Advocacy Day in 2018.