Congressman launches cancer caucus

DeSaulnier, battling leukemia, hopes group can keep funding strong

WALNUT CREEK — Congress has hundreds of them — from the “American Sikh Congressional Caucus” to the “Congressional Interstate 11 Caucus” and the “Congressional Bourbon Caucus.”

Now an East Bay congressman is launching a new caucus that members of Congress no doubt hope they’ll never have to join: the Congressional Cancer Survivors Caucus.

“Cancer is not a partisan issue,” said Rep. Mark DeSaulnier, D-Walnut Creek, who has

“Cancer is not a partisan issue.” — Rep. Mark DeSaulnier

leukemia and filed the paperwork to create the caucus last week.

But it’s hard to escape the politics because the Trump administration is gearing up to fight for budget cuts that DeSaulnier and many cancer groups say would hamstring cancer research.

“People who have experienced it generally understand that public research has contributed to the fact that they and their relatives and friends have been able to overcome things that 10 years ago, they couldn’t,” DeSaulnier said.

The new caucus will host a regular series of meetings between members of Congress and cancer researchers. The group will define “cancer survivor” broadly: It will also be open to anyone who has had a family member or close friend survive cancer.

DeSaulnier said the caucus wasn’t created specifically to respond to President Donald Trump’s proposal to cut research funding. But it’s launching at a time when cancer research faces what advocates say is an almost unprecedented federal funding threat.

Trump’s budget would slash the National Institutes of Health budget by $5.8 billion — a more than 20 percent cut — which would mean dramatic reductions in grant money to cancer researchers at universities around the country, and fewer clinical trials for new cancer treatments.

“It could have devastating consequences on the pace of progress,” said David Pugach, a vice president at the American Cancer Society Cancer Action Network. “You could forget funding anything new, and the impact on ongoing research alone would be significant.”

Nascent and promising strands of research — like training patients’ own immune systems to fight their cancer, using gene sequencing to better understand the disease, and testing for cancer with a simple blood sample — would all be imperiled, cancer researchers say.

Real progress

The cuts would come on the tail end of real progress. Last year, Congress easily passed a bill named for Beau Biden, former Vice President Joe Biden’s son — who died of brain cancer last year — guaranteeing $1.8 billion in cancer research funding over the next seven years. That money helped identify the areas of research that would be most promising, but if the cuts go forward, research on those fronts would be stunted.

Biden is now running a separate cancer initiative as part of his personal foundation. But there’s no way nonprofits or foundations like Biden’s could overcome such a large loss of public funding, said Jon Retzlaff, an official at the American Association for Cancer Research: “They can’t make up for the deep pockets of the federal government.”

DeSaulnier, 65, said there’s still bipartisan support in Congress for NIH funding, and he’s hoping his caucus helps “make members realize that when it comes to medical research — in this instance cancer — there are exponential returns on investments.”

“The administration doesn’t see it that way,” he added dryly.

The White House press office did not respond to a request for comment about how the Trump budget would impact cancer funding.

Touchy subject

Cancer can be a touchy subject among elected officials. Some of the lawmakers DeSaulnier approached about participating in the caucus told him they didn’t want to get involved because they didn’t want the public to know about their diagnosis, or they were worried an election opponent might use it against them.

The co-chairman of the caucus will be Rep. Ted Poe, a Texas Republican.

“This past year, the fight became personal for me when I was diagnosed with leukemia,” Poe said in an email. “I look forward to working with Congressman DeSaulnier, Congress and the Survivor Caucus to bring awareness to the battle that cancer patients like myself face each day.”

The duo is still recruiting other members, and the first meeting hasn’t been scheduled yet, but Dr. Siddhartha Mukherjee, a physician whose book on cancer won a Pulitzer Prize, has agreed to be a speaker.

DeSaulnier has had a positive response to treatment and is largely in remission. His doctors have told him he can expect a normal life span.

Some of the most exciting advances in cancer medicine, he said, are not about curing cancer — but managing it and keeping it in control.

“Mine is incurable, but to me, I’m less interested in what the definition is as long as I can get up every day and breathe for the rest of my life expectancy,” DeSaulnier said.

He first announced that he had leukemia in an interview with the East Bay Times in May 2016, nine months after he was first diagnosed. The decision to go public was agonizing.

“The night before, I was a wreck,” DeSaulnier said. “Part of it was I didn’t want people to be sorry for me.”

But since he made the announcement, cancer survivors from his district and around the country have reached out to him to talk about their own experiences with the disease. He thinks those kinds of discussions are critical for raising awareness.

“You don’t choose to get cancer,” he said. “So why should you have any shame associated with it?”