Patient advocacy groups like the American Cancer Society (ACS) have not been known for their hard-charging lobbying efforts. In fact, IRS rules prevent charities from getting involved in politics.

But, these organizations have to be more than support groups if they want to raise real money for research. They now realize that they won’t be able to shape science policy in Washington by holding charity balls and fundraising walks.

So, some of them have formed separate lobbying organizations, like the ACS Cancer

Action Network, which held its annual breakfast at the Museum of Science early Monday morning. There, donors, business execs and politicians shared bagels and coffee with ACS funded scientists in tent overlooking the Charles River.

Groups like the Cancer Research Network and the Alzheimer’s Associations’ Alzheimer’s Impact Movement are registered with the IRS as 501( c )(4), groups. That means, unlike donors to the 501( c )(3) charity groups, donors to these groups don’t get a tax deduction. And the Cancer Action Network can use the funds to support candidates and pay for lobbyists, unlike its parent charity.

As the Cancer Action Network president Christopher Hansen told the group “We can move our mission further and faster through government action.” His point: The ACS, the largest private funder of cancer research in the world has raised $3.5 billion in 65 years

“That’s pretty impressive,” he said. “The federal government, through the National Cancer Institute, spends $5 billion every year. That’s leverage we need.”

The group is worried about planned cutbacks at NIH and tries to fill in a bit. It supports scientists like Shannon Stott, who applied for an NIH post-doc fellowship for her work on a chip that identifies circulating tumor cells.

“They were like “This is great, this is really exciting, this is cutting edge…but you haven’t published anything’,” the Mass General Hospital researcher told the group. But, she was able to get money from ACS’s New England CAN chapter that kept her on the project for three years. Now her team has a $15 million NIH Grant and money from the celebrity-studded “Stand Up for Cancer Group.” (The lab also has an industry partner.)

Who benefits? Boston Health News reports Increase-Funding-for-Cancer-Research.pdfon Pat Spain, the 31 year old host of the Animal Planet show, “Beast Hunter.” Spain was diagnosed with colon cancer soon after this show wrapped. He told the group that chemotherapy is worse than a ritual he endured for his show – being bitten hundreds of times by poisonous ants.