By Tal Kopan
The routine of carrying the drug in his shirt helps the Concord Democrat remember to take his medication. But his daily struggle with cancer is never far from his mind in his legislative work.
DeSaulnier, 67, was diagnosed with stage four chronic lymphocytic leukemia in July 2015, just months after arriving in Washington after more than two decades as a Contra Costa County local officeholder and state legislator.
“I came to Congress, and I got cancer,” DeSaulnier said with a wry smile in an interview with The Chronicle.
Six months of chemotherapy dramatically reduced the cancer in his body. When the illness started a resurgence a year and a half later — as doctors expected it would — DeSaulnier began taking the pill, Imbruvica, daily. While the cancer is incurable, it remains manageable long-term with medication.
The experience has changed the trajectory of his political work. DeSaulnier formed the bipartisan Cancer Survivors Caucus in 2017, consisting of lawmakers who have battled the disease themselves or been close to someone who has. Besides being a support group, the caucus works on policies to improve cancer treatment, informed by the insight that comes only through a fight no one would volunteer for.
DeSaulnier has proposed legislation after seeing for himself the difficulties of navigating the health care system, including a measure intended to help doctors guide patients through a traumatic time.
He has become a fighter for government funding for health research. The timing of his diagnosis was lucky: He was treated a few years after the drug that now keeps him alive was approved by the Food and Drug Administration. A decade earlier, his diagnosis would have been a death sentence. Now, DeSaulnier advocates for government funding for potentially lifesaving breakthroughs.
“If the general public knew the value that they get out of (the National Institutes of Health), the brilliance that’s there, how it’s unlike any other place in the world,” they’d see the value of taxpayer funding, DeSaulnier said. “It’s one of the great things America does that we don’t know about.”
It’s that passion for research that added a layer to his work on behalf of Concord resident Isabel Bueso, whose story became a symbol for people fighting the Trump administration’s attempt to end a program that protects immigrants with serious medical problems from being deported. After DeSaulnier’s committee held a hearing at which Bueso testified, the administration reinstated the program. Bueso was originally invited to come to the Bay Area from her native Guatemala to take part in a clinical trial with UCSF Benioff Children’s Hospital Oakland to study her rare condition.
“It’s outrageous. I can’t believe this is happening in the United States of America,” DeSaulnier said before the administration reversed course. “The cruelty part is they don’t seem to care at all of what they’ve done to not just innocent people but, in Isabel’s case, someone who’s been invited to this country to be part of a federal trial.”
Rep. Mark DeSaulnier
Birthplace: Lowell, Mass.
Education: College of the Holy Cross in Worcester, Mass.; bachelor of arts, 1974.
Family: Two sons, Tristan and Tucker.
Political career: Concord City Council, 1991-94; mayor, 1993. Member of the Contra Costa County Board of Supervisors, 1994-2006; chairman, 1994. State Assembly, 2006-08. State Senate, 2008-14. Congress, 2015-present.
DeSaulnier’s medical journey started in July 2015.
He went to the doctor after returning to the office from a run, where the horrified reactions of his staff informed him he had burst a blood vessel in his eye. At first he was referred to a specialist to investigate a growth that looked like it could be skin cancer.
But that doctor’s reaction indicated something else was happening.
“I’m sitting there going, ‘What’s going on? Why are they being so serious and dramatic?’” DeSaulnier said. “And the other physician came in … and looked at me and he said, ‘You’ve got some form of full-scale lymphoma. We need to get you down for a CAT scan.’”
DeSaulnier began nearly six months of chemotherapy. In May 2016, after his doctors assured him his cancer was responding well, he made his condition public. A year and a half later, he began taking his lifesaving pills.
But his initial meeting with his doctors was not the only time he was confused and frightened because of miscommunication. After his course of chemo, a general practitioner left him with the impression that his cancer was not responding to treatment. It was a beautiful, clear day, and he walked outside his office on Capitol Hill to consider the moment.
“I remember sitting out there looking at the Library of Congress, Supreme Court and the Capitol, and just thinking, ‘Strange, to end up sitting here and be told you don’t have much longer to live,’” he said.
The next day, DeSaulnier went to see his specialist. The oncologist stared at his computer, breaking the silence with occasional “hmms.” Soon, the doctor told him he was responding well and was going to live awhile yet.
“So I’m not gonna die of cancer, but you’re going to give me a freaking heart attack,” DeSaulnier replied.
It’s that type of experience that has inspired DeSaulnier’s legislative work. His Cancer Care Planning and Communications Act would let doctors bill Medicare for time spent preparing care plans for their cancer patients, the goal being to better guide people through an emotionally fraught moment. DeSaulnier teamed up with the Republican co-chair of the Cancer Survivors Caucus, Rep. Buddy Carter, R-Ga., to reintroduce the bill in July.
DeSaulnier also proposed the Patient Navigation Assistance Act, which would have Medicaid pay for patient navigators — professionals who can work with patients to understand their diagnoses and care. He reintroduced the bill last week.
Miscommunication with medical professionals is an experience shared across the survivors caucus. Rep. Andy Levin, D-Mich., is a two-time survivor of non-Hodgkin’s lymphoma. In 2000, he went into surgery for what doctors thought might be a hernia. After being released, he called the surgeon’s line to check on some blood pooling in the area.
“He said, ‘You didn’t have a hernia,’” Levin said. “He said, ‘No, you had a lymph node and it looked bad.’ … This is how I found out I probably had cancer.”
DeSaulnier works on behalf of people in similar situations who don’t have the resources that a member of Congress has, Levin said.
“I’m a huge Mark DeSaulnier fan,” Levin said. “He’s somebody who’s not the loudest member of Congress — he doesn’t seek a lot of attention — but he builds effective relationships. … He doesn’t have his finger up in the wind a lot. He has his values, he lives his values, he votes his values.”
DeSaulnier may not have the highest media profile or the most legislation to his name, but colleagues describe him as influential behind the scenes. Rep. Karen Bass, D-Los Angeles, said he shows “quiet leadership” on a range of issues.
He’s also made an impression on first-term Rep. Alexandria Ocasio-Cortez, D-N.Y. Early on, she said, he was one of the lawmakers who went out of their way to make her feel welcome.
“He gives a damn in a really humane and compassionate way,” Ocasio-Cortez said.
Rep. Eric Swalwell, D-Dublin, was a teenager when he met DeSaulnier while volunteering on one of his Contra Costa County campaigns. At the time, DeSaulnier was still involved in his first career, as the owner of a now-closed bar and grill in Concord.
“He’s still just kind of that happy guy behind the bar, who has a smile and welcomes you as you come into his place of business,” Swalwell said. “That’s the same Mark that I see here on the Hill.”
DeSaulnier said he learned some lessons running a restaurant that apply to politics, including the importance of building relationships early.
“One of the most important periods in the restaurant business is the first 30 days to six months,” DeSaulnier said. “If you develop a good reputation in the restaurant business and politics, it feeds on itself. Having said that, if you don’t keep up the reputation, then there’s probably two professions where people are merciless.”
His passion for helping others through struggles — and willingness to be forthright about his own — also date to much earlier. DeSaulnier was in college when his father, Edward DeSaulnier, was removed from his Massachusetts judgeship on corruption allegations. He committed suicide in 1989. DeSaulnier was open about his father’s mental health problems and found that people opened up about their own stories. It led him to be candid with the public about his cancer.
“I said, ‘You know, we should probably tell the press because I just want to be honest with people,’” DeSaulnier said. With his father’s story, “my consultant was horrified because she said, ‘All people will remember is something bad happened and you have an unusual name.’ And I found just the opposite.”
The need to be personally invested in his work was reinforced by a mentor — and customer. His predecessor in his Contra Costa congressional district, George Miller, used to frequent his restaurant. When DeSaulnier got into politics, Miller told him that much of his work would be dictated by his constituents’ needs — but not all of it.
Miller told him: “You need to find things that personally bring passion to your work,” DeSaulnier said. “It was wonderful advice. … The things that I’m actually really passionate about are people who are at risk, and how do you help them?”
DeSaulnier said it fed his desire to be an advocate for those not in positions of privilege. Now, the one change he’d like to make in Congress is reorienting the way it makes decisions to be more evidence-based, he said.
As he was sitting on that bench when he thought his time was running short, DeSaulnier said he thought about what he wanted to do with the months he had left. Getting politics to be more rational, he said, was at the top.
“Our priorities are wrong, and our decision-making process is a mess,” DeSaulnier said. “It’s based on political opinions, political consultants, and advertisers who make a lot of money off of getting people to fight. … I would like to start to change the priorities … toward education and research.”
As for how he gets that done, he’s thankful his medical care has bought him more time.
“I think it’s a long slog,” he said.