Updated, Jan. 17. | Chip Kennett had never been a smoker.
The seemingly healthy former Capitol Hill staffer went for a routine eye exam in October 2012 that revealed a suspected melanoma. A positron emission tomography scan and subsequent biopsy diagnosed 31-year-old Kennett with Stage IV lung cancer. The disease was incurable. His prognosis: one to two years to live.
“I just kept saying, ‘What? What?’ over and over again,” said Sheila Kennett, Chip’s wife, who was director of scheduling and operations for Sen. Jay Rockefeller, D-W.Va., at the time. “Chip grabbed my hand, looked me dead in the eye and told me with all the confidence in the world, ‘We’ve got this.’”
The Kennetts met while working as staffers for Sen. Judd Gregg, R-N.H., — Sheila as scheduler and Chip as legislative correspondent. They’d spent a combined 17 years working on Capitol Hill before leaving for their current roles with the Alpine Group and Raytheon, respectively. Unlike members of Congress, who often leave Capitol Hill privileges and clout behind when departing, staffers take their community with them. Connections made between staffers can last years, through multiple job switches.
For Sheila and Chip, the Capitol Hill community was about to change their lives.
When Chip received his diagnosis, Sheila was 35 weeks pregnant with their second child. She emailed the news to Sarah Arbes — who was then a staffer with Sen. Mitch McConnell, R-Ky., and now is on the Senate Health, Education, Labor and Pensions Committee — whom she’d met through the bipartisan Senate Mom’s Coffee Group. “Please pray for us,” Sheila wrote.
Arbes did more than just pray. She forwarded Sheila’s email to the entire group, and calls and emails arrived in droves.
“By the following Monday or Tuesday, I feel like all of Capitol Hill knew,” Sheila said.
Kerry Ates, then-chief of staff to Rockefeller, told Sheila they had to share the news at the weekly staff meeting. Ates didn’t want to wait; she was concerned that staff would hear about it from others. (Disclosure: This reporter served as a Rockefeller staffer from 2009 to 2011.)
Ates announced Sheila’s news to the staff, many of whom had known her since she and Chip were married, and had worked in the office as Sheila was pregnant and later gave birth to their older son, Joe. Sheila didn’t attend the staff meeting, but she heard afterward about the stunned reaction.
“There wasn’t a dry eye in the room,” she said.
Casseroles started showing up on the Kennetts’ doorstep. Emails flooded in from the House and Senate, from people Chip and Sheila didn’t know personally but who had heard of their situation. They offered research about cancer trials, connections at cancer hospitals and even babysitting services.
The Kennetts turned to their friend Ginny Johnson, wife to former Rockefeller staffer Clete Johnson. She set up a meal delivery rotation four times a week for the following three months. Spots were snapped up, primarily by Capitol Hill staffers. After Sheila delivered their daughter Crosby in December, funds were raised for a night nurse, allowing Chip and Sheila to focus on treatment plans while a professional cared for their newborn. Staffers could deliver food to their house in Alexandria, Va., or to the Rockefeller office, where Ates would drop it off on her drive home.
The true mobilizing efforts of Capitol Hill came in March 2013, when Chip was one of 164 people selected for a clinical trial for a promising new cancer drug trial in Philadelphia. The out-of-pocket costs would exceed $11,000 a month for the Kennetts. Determined to help, Johnson sent an email to the group who’d signed up on the Lotsa Helping Hands site and posted the request on the “Team Kennett” blog Sheila had started writing.
(Ever the savvy Hill staffers, the email solicitation included a line about Senate ethics, clarifying there are no rules against Senate employees making donations, but Senate Ethics rules prohibit Senate employees from soliciting donations.)
The initial goal was $22,000, for two months worth of expenses. Fourteen days later, the drive concluded with $56,822.
“We literally found ourselves completely overwhelmed by everyone’s generosity and kept saying how lucky we were! Now just how messed up is that??” Sheila wrote on the Team Kennett blog. “We questioned whether we had been so generous and supportive of others in the past. Chip so perfectly said he certainly hoped so, but we both knew we had not. … We both quickly added ‘Become a better person’ to our respective to-do lists.”
And while the Kennetts acknowledged they may have found the clinical trials on their own, the support and assistance from Capitol Hill — including efforts from Rockefeller himself — helped steer them in a clear direction.
Taking Action on Capitol Hill
After 10 months of treatment in Philadelphia, Chip returned to Johns Hopkins in Baltimore for oral chemotherapy infusions, which provided him with enough energy to work full-time and spend time with his family during the treatment.
But he wanted to do more. “I knew that lung cancer didn’t receive the funding levels that other cancers had received, because of the stigma,” Chip said. “People assume that you smoke and that it’s a self-inflicted cancer.”
Less than 20 percent of people diagnosed with lung cancer live five years post-diagnosis. “And what really bothered me, is that it had stayed nearly flat for over 20 years,” Chip said.
Andrea Ferris, president and chairperson of LUNGevity, said 65 percent of people diagnosed with lung cancer are nonsmokers like Chip (including those who have never smoked or are former smokers) and 30 percent of all cancer deaths come from lung cancer.
In November 2013, LUNGevity hosted its annual Breathe Deep DC Walk on the National Mall. Chip decided to attend at the spur of the moment, surprised to find himself wearing a green “survivor” T-shirt instead of the ubiquitous blue ones issued to everyone else. There he met Ferris; they followed up with lunch and decided to work together.
LUNGevity’s focus is raising money for research; it hadn’t had a Capitol Hill presence and Chip wanted to change that. He set up meetings between Ferris and key health aides on Capitol Hill.
“Chip is such a remarkable individual with what he has decided to do,” Ferris said. “He is a living testament as to what an investment in research is doing, and how it’s helping people.”
As Chip’s story continued to spread on Capitol Hill, Rachel Pryor, a former Rockefeller staffer who became a senior policy adviser for the Senate Committee on Aging, knew there was a way for Chip to raise awareness about recalcitrant cancers, including nonsmoker lung cancer.
“I knew about Chip,” she said. “It had affected me personally. We wanted to have a hearing that showed we still needed to prioritize putting money into treatments that are new and innovative. And here is someone like Chip that is benefiting from the breakthrough treatments on the marketplace.”
Pryor is referring to the Advancing Breakthrough Therapies for Patients Act, a law passed in 2012 to expedite Food and Drug Administration approval of clinical trial drugs and treatments. Because of such legislation, Chip’s treatment had been approved. He was invited to testify about his experience for a Senate Committee on Aging hearing on May 7, 2014.
Pryor described Chip as an excellent witness. He was a familiar face to the senators at the dais: He had worked as a staffer for Sen. Susan Collins, R-Maine, the ranking member of the committee, and he was from New Hampshire and worked with the office of Sen. Kelly Ayotte, R-N.H., another committee member.
Chip’s testimony might have helped changed the trajectory of lung cancer treatments. Medicare was not required to cover a lung cancer screening test at the time; after the hearing, 42 senators and 134 House members signed a letter to the Centers for Medicare and Medicaid Services requesting the change, and Medicare now covers the cost. In June, a month after the hearing, the National Institutes of Health released its first framework for one type of lung cancer, which included getting aggressive treatment plans, like the one Chip had gone through in Philadelphia, to market.
Pryor credits Chip for helping Congress take action. “Members are looking at Chip, and he says, ‘I’ve been the benefit of this stuff. It needs to be expanded and it works. I’m looking at you, I used to work for you. You need to help keep me alive.’”
Chip surpassed the two-year life expectancy mark in October 2014, and he and Sheila celebrated with a party of more than 200 friends and supporters. That same weekend, Chip and Sheila hosted the largest team for Breathe Deep DC, with more than 120 participants raising more than $15,000 for lung cancer research.
Chip says he feels well and is energetic. He is soft spoken, yet serious when he describes his gratitude for the people on Capitol Hill whose support “lifts him up” on a daily basis. He still sees many of the same familiar faces when walks the halls of the Senate, though he said he views the Capitol Hill community in an entirely different light.
“I feel really good now,” Chip said. He has stopped oral chemotherapy as part of a 30-day “wash out” phase required to enter clinical trials, though he is anemic and suffers from fatigue and occasional shortness of breath, which recently required a hospitalization. Chip and Sheila are actively seeking new treatments and will head to Boston in the coming weeks as part of a two-day screening process for a clinical trial at Massachusetts General Hospital.
Chip plans to remain involved in advocacy work for lung cancer research. He was one of the keynote speakers at a LUNGevity gala, served on a panel with Friends of Cancer Research and has participated in a podcast with the Prevent Cancer Foundation.
Throughout it all, the Kennetts remain grateful to Capitol Hill for the support from the staffers and the action of the members.
“We’ve learned to ask for help,” said Sheila. “If we had just hung up our hat when we got the prognosis, instead of fighting, I don’t know if we’d be here today.”
Update, Jan. 17: Sheila posted the news on Facebook Saturday morning that Chip had lost his battle with cancer. He died Saturday at age 34. More information is here.
Correction: Jan. 15, 1:50 p.m.
A previous version of this story misstated the percent of people diagnosed with lung cancer who were classified as nonsmokers. It is 65 percent.