The Cancer Caucus

The personal stories shaping the new fight for the cure

Posted Mar 11, 2016 5:00 PM

Vice President Joseph R.  Biden Jr.’s loss of his son Beau drives him as he leads the national “moonshot” effort to cure cancer, but he’s far from the only policymaker whose experience with the disease motivates him.

Here are the stories of Democrats and Republicans, men and women, whose personal battles have led to bipartisan support for increasing National Institutes of Health funding and accelerating research to find cures for cancer and other fatal diseases.

UNITED STATES - FEB. 10 - Democratic National Committee Chairman Debbie Wasserman Schultz, D-Fla., speaks during an interview in her office on Capitol Hill in Washington, on Wednesday, Feb. 10, 2016. Schultz is a Breast Cancer survivor since 2008. (Photo By Al Drago/CQ Roll Call)
Debbie Wasserman Schultz, D-Fla.,  is a Breast Cancer survivor. (Photo By Al Drago/CQ Roll Call)

Recognizing Genetic Risks

Rep. Debbie Wasserman SchultzHer breast cancer diagnosis alerted her to testing that too few women know about.

The only people Rep. Debbie Wasserman Schultz told about her cancer diagnosis at first were close family members, her roommates and the need-to-know staff who helped manage her schedule as she was going through treatment.

“When you have cancer, everything else falls into the background and your sole goal is just to beat the cancer,” the Florida Democrat said. “It’s a very isolating thing to go through, so you want to make sure you have some control in your life because you really feel like you’ve lost control over everything that’s happening to you.”

But she knew she wouldn’t stay quiet forever. She wanted more women to know what she found out with her diagnosis at age 41: She carried a genetic mutation that gave her an 85 percent chance of developing breast cancer.

“It was eye opening and sobering enough to be hit with the anvil of a cancer diagnosis, but on top of that to learn that I have been ticking time bomb my entire life because I carry this mutation — that was really a double whammy.”

Wasserman Schultz learned she had breast cancer in late 2007 after finding a lump in her breast during a self exam. Following her diagnosis, she said she “just didn’t absorb that a young woman at my stage of life could get breast cancer.” But then she learned she carried a mutation of the breast cancer 2 gene, BRCA2, that is common in Ashkenazi Jews. Since the gene also put her at risk for ovarian cancer, she opted for surgery to remove her ovaries, as well as a double mastectomy.

Wasserman Schultz had seven surgeries throughout 2008 — all while continuing to serve as a congresswoman (she never missed a vote) and work on the presidential campaign.

“I went through a year of hell, to say the least.”

In 2009, she was ready to share her story. She announced the Education and Awareness Requires Learning Young (EARLY) Act to provide funding to raise awareness about breast cancer among young women, especially those in populations that face a higher risk.

“If I didn’t know, as knowledgeable as I was about cancer — and I am certainly not a cancer expert, but legislatively I had been very involved in fighting cancer —  then you know I realized how many women in my same situation don’t know.”

Congress passed the EARLY Act in 2010 as amendment to the Affordable Care Act and reauthorized the funding in 2014 for an additional five years.

And when gynecologists and advocacy groups gave conflicting advice on when women should begin breast cancer screenings, Wasserman Schultz and Rep. Renee Ellmers, R-N.C., added language to year-end spending legislation in 2015 tasking NIH and cancer experts to come up with a consensus recommendation within the next two years.

Wasserman Schultz is especially interested in seeing increased investment in genomic research that could make a difference for her children, particularly her two daughters, who are at risk of carrying the same genetic mutation.

“It breaks my heart that they live in fear of learning that they carry that mutation, too. Whenever they learn that — hopefully they don’t have it — but whenever they learn that, then they spend years struggling with, ‘Do I have a prophylactic mastectomy? Do I take steps to reduce the chance that I’m going to get cancer one day? When do I do that? Do I wait until I meet someone and roll the dice and hopefully take the chance that I won’t have breast cancer before I have children or before I’ve gotten married, before I can nurse my children?’

“I was fortunate. My husband and I had all the children that we planned to have when I was diagnosed and didn’t know about my own genetic risk prior to that. But my children will be in a different situation. With a ‘moonshot’ effort, we can really make sure that we can make so much more intense progress.”

UNITED STATES - JUNE 04: House Majority Leader Kevin McCarthy, D-Calif., is photographed in his Capitol office, June 4, 2015. (Photo By Tom Williams/CQ Roll Call)
House Majority Leader Kevin McCarthy, R-Calif., lost his father to cancer. (Photo By Tom Williams/CQ Roll Call).

Remembering Ups and Downs

Rep. Kevin McCarthyHis father’s positive approach to cancer shaped his outlook on life.

When Kevin McCarthy looks back on the three years his father spent battling cancer, a journey during which the California Republican was frequently by his father’s side, he remembers just as many ups as he does downs.

It started nearly 20 years ago, before the House majority leader ever held elected office. McCarthy’s dad, who had recently retired from his career as a firefighter, was out biking one day and found he wasn’t feeling well.

“He was having a little trouble urinating, so he goes to see the doctor and he had a large mass that had crushed one kidney and it was crushing the other, so they rushed him into surgery,” McCarthy recalled.

The mass was diagnosed as leiomyosarcoma, a rare form of soft tissue cancer. “He never knew he had it. He had just passed a physical before and he was fine.”

Cancer quickly changed that.

“The way you fight it is you poison people … so they even get sicker. My dad would be sick all month long except for like four days. Then he had to go to the next round.”

“Where he took his chemo was in the same building where I worked, so I would go and play cards with him on my lunch hour.  And I could tell — you almost could get a feeling — the attitude of how people were doing and [if] people were going to make it. My dad always had a positive attitude.”

One day during treatment, a fire truck came by. “The next thing I know, my dad has IV with his chemo and he’s riding the side of the fire truck and they’re taking off.”

Still, the experience was grueling. “It is a wear and tear on the entire family and emotionally what everybody goes through is not easy from all aspects.”

After his father had been through several rounds of treatment, McCarthy sent his parents on a trip to Europe. His dad had never been to Ireland or flown first class, so McCarthy saved up his miles and gave him that experience.

“He got to kiss the Blarney Stone. He felt great. Then he went to London. ... He started not feeling well. They were going to go to Italy, too, and he had to come home. He died at home in hospice in less than a month in the year 2000. It was a couple days after my birthday.”

Even in the last few days of his life, his father remained positive.

“My dad had gone from being about 225 [pounds] to about 140. And I still remember the moment my mom was in there and he asked the hospice person, ‘Why are you here? And the hospice says, ‘You’re dying.’ And the look in his eyes, he said, ‘I’m not dying.’ I mean everybody could look at him and see that he was losing his battle.”

He was 58 when he died.

The outlook on life that McCarthy developed during his father’s battle with cancer sticks with him today.

“I tell my kids and my wife I love them every day. You realize that this job does not define your life by any shape or form, that at any time and any place it can hit you. It also makes me try to reflect on my own family’s health. It reflects on what you value, what you cherish.”


UNITED STATES - FEBRUARY 12: Rep. Billy Long, R-Mo., poses in his office on Feb. 12, 2016. (Photo By Bill Clark/CQ Roll Call)
Rep. Billy Long, R-Mo. wanted to trade places with his daughter when she got the cancer diagnosis. (Photo By Bill Clark/CQ Roll Call).

Working for More Cures

Rep. Billy LongHis daughter’s cancer gave new urgency to the push for more research.

Rep. Billy Long would have given anything to trade to places with his daughter.

That’s because, at 26, Kelle Long was diagnosed with cancer last year. “When you first get that news, especially with a child, it’s devastating,” the Missouri Republican said. “The first thing you think of is, ‘Why her? Why not me?’”

In early 2015, Kelle, who is normally active and “cold-natured,” her father says, had begun having night sweats and feeling too weak to stand. Her older sister, who was then in medical school, suggested she see a doctor.

“And so I took her to the emergency room. The bombshell was they said she has large mass in her chest.” It was non-Hodgkin’s lymphoma. That night, Long stayed with Kelle at the hospital and slept on the tile floor by her bed.

“There was a clock on the wall and it looked like the clock had stopped or it had actually stopped. I kept looking at the clock all night and I thought, ‘Well, it’s 10 after 4, it’s 10 after 4, it’s 10 after 4, and whenever I woke up it was 10 after 4 and the clocked had stopped in the middle of the night. Well here I thought our lives had stopped in the middle of the night. Kelle’s life has stopped.”

Kelle’s life did not stop that night, but it did change. She spent the next several months in and out of the hospital for chemotherapy treatments, one every other week for 12 weeks.

“She did all her chemotherapy treatments and lost her hair, of course, and went through the process of having wigs and got stronger and stronger over a course of time. And then after she had her last chemotherapy appointment, last August 10, she had a PET scan shortly after that and it came out clean.”

Kelle is back at work and playing tennis, and she’s grown back her thick, curly locks.

Her father also went through a transformation.

During Kelle’s illness, Long missed two weeks of work in Washington, after not missing a single vote in the two years prior.

“I couldn’t come around anybody. I couldn’t talk to anybody. I didn’t want to see anybody, friend or foe. I just couldn’t talk to anybody on the telephone. It was just devastating.”

After Kelle’s diagnosis, Long reached out to Francis Collins, director of the National Institutes of Health, and Michael Milken, founder of the Milken Institute, which operates a center focused on accelerating medical research. Milken, a cancer survivor, told Long that his goal is to make cancer a chronic disease – a hope that research advancements will prevent the untimely deaths of many cancer patients.

Long shares that goal, and as a member of the House Energy and Commerce Committee’s health subcommittee he worked for two years on the 21st Century Cures Act.

“We really, really hope that we can get 21st Century Cures and make that become a reality so we can kind of get up to speed with what we need to do with staying up with the treatments. I think they say there’s 10,000 diseases and 5,000 cures.”

UNITED STATES - FEBRUARY 11: Rep. Donald Payne, Jr., D-N.J., is photographed in his Cannon Building office near a picture of himself and his late father former Rep. Donald Payne, D-N.J., February 11, 2016.(Photo By Tom Williams/CQ Roll Call)
Rep. Donald Payne, Jr., D-N.J., is photographed in his Cannon Building office near a picture of himself and his late father former Rep. Donald Payne, D-N.J. (Photo By Tom Williams/CQ Roll Call)

Emphasizing Screening

Rep. Donald M. Payne Jr.Dad's death brought home the importance of early screening.

Rep. Donald M. Payne Jr. never thought of getting screened for colorectal cancer until his father died from the disease.

“I have taken it up as a cause to try to do what I can to make sure other people do not go through the devastation of this terrible disease,” the New Jersey Democrat said. “We have made it our mission in this office, and me personally, to wherever I can tell the story of my father.”

Payne was elected to Congress in 2012 to fill his father’s seat. Donald M. Payne represented New Jersey’s 10th District for more than two decades until he died at 77.

“Unfortunately it goes back to not being screened early enough to detect the cancer. There’s no reason my father should still not be a member of Congress. Other than that issue, he was very healthy and had very decent longevity on that side of my father’s family. Had he been tested and screened, he’d still be here.”

He recalls the last night he spent with his father outside of the hospital.

They were watching the 2012 Super Bowl together. Following his cancer diagnosis, doctors had the elder Payne taking his temperature a few times a day. The younger Payne noticed his father often grabbed a drink before placing the thermometer in his mouth, which he suspected was throwing off the reading.

The night of the Super Bowl, Payne recalled, “He went to drink something, and I said, ‘No don’t drink anything, just take your temperature now.’ And it was 102. And so we called the doctor, and he thought we should go to the hospital. That was February 5 or 6 and he died a month later. We went to the hospital that night and he never came back out.”

Payne decided he needed to get screened himself. The doctors found 13 polyps, clumps of cells that line the colon and over time can become cancerous.

“They were all removed and no issues, thank goodness. But it just goes to show, I was really late in getting mine done.” He now gets screened every year on his birthday as a gift to himself.

The recommended age for beginning colorectal cancer screening is 50. Payne, who is now 57, said he tells people to go at age 40 because in some populations, issues are discovered that early.  African Americans, for instance, have the highest rates of incidence and mortality of all racial groups nationally.

“The terrible thing about colorectal is it’s the second-leading killer of all cancers, and it’s the most curable. ... There’s no reason to succumb to it if we do what we need to do.”

Payne helped gather the petitions from his colleagues to have the president declare March as Colorectal Cancer Awareness Month. When it comes to screening, he considers himself “a pied piper” of sorts, frequently speaking at medical centers and health fairs.

Part of his message is eliminating the false perception that the screening process is painful.

“You go in and they put you to sleep and you wake up and you get Graham crackers and apple juice. So I mean, you know, it’s not a bad afternoon.

UNITED STATES - FEBRUARY 25: Rep. Chuck Fleischmann, R-Tenn., is interviewed by CQ Roll Call in his Cannon Building office, about losing his parents to cancer, February 25, 2016. (Photo By Tom Williams/CQ Roll Call)
Rep. Chuck Fleischmann, R-Tenn., lost both his parents to cancer. (Photo By Tom Williams/CQ Roll Call)

Learning the Value of Hope

Rep. Chuck FleischmannHis mother’s cancer upended his life but taught him the importance of hope.

Rep. Chuck Fleischmann vividly remembers his mother’s final days, the extreme pain she experienced as she succumbed to breast cancer when he was 13.

“The most difficult loss was the loss of my mother when I was very young,” the Tennessee Republican said. “When I was 9 years old she was diagnosed with breast cancer. And of course I was just a kid. I didn’t really know what cancer was.”

Fleischmann’s mother had a mastectomy but the cancer recurred two years later and metastasized to her bones.

“My father basically did a very good thing for me because at that time, I was 11 years old. He did not tell me that the diagnosis was going to be terminal. And I always appreciated that.”

But then at 13, “I saw her the day before she passed and [she was] just literally gasping for air, on oxygen. And then sadly, she did pass.”

“Because of my father’s experience with my mother, he became very emotionally upset and would cry anytime someone was diagnosed with cancer. He viewed that diagnosis sadly as a death sentence.”

That pessimism was an unfortunate foreshadowing. Fleischmann’s father was diagnosed in January 2013 with esophageal cancer, and he died a few months later from complications related to his treatment.

But it was his mother’s death that changed his life.

“I ended up basically being the caretaker, the cook, the cleaner and the like. I’ve no regrets in that regard.”

His family had moved around a lot to accommodate his mother’s cancer treatments and his father’s fluid employment. He spent his early high school years alone while his father traveled for work before moving again his senior year.

“I didn’t get to play the high school sports that I always wanted to, and I didn’t get to go to the prom,  and I didn’t have that cherished high school relationship that so many people had. I had one year in my Chicago high school and really didn’t know many people at graduation. So it was difficult.”

The open dialogue about cancer that exists today simply didn’t happen then.

“When I was a kid — it was interesting — if someone had cancer, there was a whisper. Someone could have a heart attack or a stroke and they would talk about it. … Someone would pass or have cancer and it wasn’t really talked about.”

Fleischmann is not shy about sharing his story. He and his wife frequently tape public service announcements trying to inspire a sense of hope for cancer patients. He delivers that same message when speaking with constituents who have been impacted by the disease.

“These are real stories with people who have either lost a loved one or gone through a personal experience.

The good news is we are seeing a lot of volunteer efforts — not only on the fundraising side but on the activist side —  to deal with the specific forms of cancer, to combat that.”

Contact McPherson at  lindseymcpherson@rollcall.com and follow her on Twitter @lindsemcpherson.


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