Taking time to make a difference

By: Kristyne E. Demske | St. Clair Shores Sentinel | Published October 14, 2015


ST. CLAIR SHORES — She had been a volunteer for decades, but 15 years ago, Peggy DeHaven decided she wanted to do more.

DeHaven, who has lived in St. Clair Shores for three years had been a volunteer working with the American Cancer Society’s Relay for Life since she lost her mother to the disease 31 years ago. When she heard about the ACS Cancer Action Network, she realized that was the work she wanted to do.

“With the American Cancer Society and doing Relay for Life, we raise money for cancer research and cancer programs,” she said. “The Cancer Action Network is the legislative arm of the American Cancer Society, and we speak to our legislators concerning issues that concern cancer patients and, actually, patients with chronic diseases.”

Matt Phelan, Michigan Grassroots Manager for the ACS Cancer Action Network, said having volunteers like DeHaven lobby Congress for new legislation and funding puts a “face to the issue.”

“When we talk about cancer research funding, it’s not a matter of dollars and cents or numbers on a sheet of paper. It’s about the people it touches, the actual lives it saves. It puts a face to that,” he said.

DeHaven’s work became a lot more personal three years ago, when, in October 2012, she was diagnosed with breast cancer.

“It gives you a new perspective,” said DeHaven. “It gave me a better perspective of why we need more funding.”

Diagnosed at 55 years old, DeHaven underwent a double mastectomy and has to be on medication for another five years, but has been declared “cancer-free.”

This was her approximately eighth trip to Washington, D.C., to lobby lawmakers for more funding for cancer research and care.

“It’s important because I never want to have one of my friends, one of my children ... hear the words, ‘You have cancer,’ and if there’s a way to prevent it,” she wants to, she said. “We go as the face of the cancer patients that can’t do it themselves, so it’s very rewarding.”

Phelan said the volunteers who are picked to go on the lobbying trips are some of the top volunteers in the state.

“It’s not a matter of just one week out of the year. They have all been in communication with the district offices and have done things in their district to support the issues we are advocating for at home, year-round,” he said.

The federal government’s sequestration has meant that research funding is sometimes in jeopardy and, DeHaven said, the rate of funding for the National Institutes of Health (NIH) has not kept up with the rate of inflation.

“These are people that are working on grants. They could be the next big cure,” she said. “When they lose their funding, their work stops and they can’t just pick it back up then, they have to start all over again.”

The research is so important, DeHaven said, because often, the research benefits those with other diseases, as well as cancer.

DeHaven and 750 other cancer patients, survivors and volunteers from across the country descended on Washington, D.C., for the ACS Cancer Action Network’s annual Leadership Summit and Lobby Day Sept. 29.

“We all wear blue polo shirts. They call us the ‘Blue Polo Shirt Army,’” DeHaven quipped.

More than a dozen representatives from Michigan met with Sens. Debbie Stabenow and Gary Peters, as well as staff from Rep. Sander Levin’s office.

DeHaven said the group was asking lawmakers for a $6 billion increase over two years in funding for the NIH, with $1 million going to the National Cancer Institute; for co-sponsors for a palliative care act; and for co-sponsors for a bill closing the Medicare loophole for colorectal screenings.

“Right now, if you have Medicare and you go in for a colonoscopy and, normally, it’s all paid for (but) if they find a polyp ... then it automatically changes the colonoscopy from a screening diagnosis to a diagnostic (test and) that changes the whole payment structure,” she said, explaining that it adds a copay. “Seniors are opting out of having (colonoscopies) because they found out about this. It’s a loophole from the Affordable Care Act. We’re asking Congress to step in and close this loophole so it’s covered.”

Lobbying in person is just the first step, said DeHaven, who has three grown sons and lives with her husband in St. Clair Shores.

“That’s always a first step and then you keep in contact and keep asking.”

The volunteers make an impact, Phelan said.

“We definitely see changes in how they approach our issue. We have seen people co-sponsor our bills after this that were not co-sponsors before, so yeah, it definitely has an impact,” he said.

This time around, he said, the Cancer Action Network received commitments from Reps. Dave Trott and Debbie Dingell, as well as Peters, to co-sponsor the palliative care act and the legislation closing the loophole in colorectal screening. Stabenow, he said, is also a co-sponsor of the legislation; she committed earlier in the year.