Lobbying for Health
Survivors and grassroots advocacy networks tackle Capitol Hill.

By Marc Silver

Tamika Felder’s gal pals don’t understand her passion for speaking out about her cervical cancer. “Girlfriend, this activism is hurting your dating life,” they chide. “You’re telling too much of your story.” But the 30-year-old Washington, D.C., resident isn’t taking their advice. She is one of thousands of cancer survivors who has plunged into grassroots advocacy, sharing sometimes intimate details of their medical history with elected officials to gain support in the battle against cancer. Their wish list includes more money for research, more effective screening and treatments, access to first-rate care for even the most indigent of patients, and, ultimately, a cure for the disease.

Grassroots activism is a fairly new development in the world of cancer. So far, it has been “hit and miss, piecemeal at best,” says Ellen Stovall, president of the National Coalition for Cancer Survivorship and herself a survivor of Hodgkin’s disease. A high point for activists came in 1998, when the coalition was instrumental in staging a march on Capitol Hill to draw attention to the needs of cancer patients. A quarter of a million people came.

“It was the first national event to get cancer on the front page of every newspaper in this country,” Stovall remembers. The march called for more funding for research; over the five years following the march, the National Institutes of Health budget doubled. But a follow-up goal of creating a database of activists was not met. “We had a splash,” says Stovall, “but it went away.”
Stovall is hopeful that things are changing. The NCCS is training an army of grassroots soldiers. And Lance Armstrong’s cancer activism has inspired many of the 10 million cancer survivors in the United States to go public.

Activism Works

“I always encourage everybody to share their personal story,” says Representative Sue Myrick, a North Carolina Republican and a breast cancer survivor who chairs the House Cancer Caucus. “When legislators can put a name and a face and a story together, it’s a lot different than something on a piece of paper. I tell people it doesn’t matter if you’ve never done public speaking.”

But she cautions that an activist can’t do it alone. “Throwing stones doesn’t work,” she says. “You have to work within the system. What I encourage people to do is to find an advocate within the system to introduce a piece of legislation”—and to help with networking, e-mailing and other tasks.

Anyone who doubts the power of the grassroots needs only look at the breast cancer community to see what can be done. With a large and vocal community of survivors behind them, the National Breast Cancer Coalition has brought more than $1 billion into research, lobbying the Department of Defense for budget allocations after the end of the Cold War freed up monies. The Susan G. Komen Breast Cancer Foundation’s “Champions for the Cure” program has, among other things, successfully pushed for legislation ensuring national mammography standards and funding for breast and cervical cancer testing for uninsured and underinsured women.

Two other campaigns are in high gear right now. The “2015 letter” is the National Cancer Institute’s call for an end to suffering and death from cancer by that year. And that will take money—starting with $29.4 billion for the NIH in the coming fiscal year. In addition, the NCCS is crusading for the Comprehensive Cancer Care Improvement Act, whose reforms include “extended treatment planning sessions” and teaching the medical community how to manage a patient’s symptoms and relieve pain.

“We had hoped we would be much farther down the road,” says Stovall of the Act’s progress, but between hurricanes Katrina and Rita, homeland security issues and Supreme Court nominees, it’s been hard to capture the eye of the public and of politicians. Grassroots activists are also campaigning for the development of new drugs for a variety of cancers, access to those drugs through clinical trials, raising the cigarette tax to reduce the number of smokers and providing better follow-up care for cancer survivors.

Don’t Be Afraid

“People think, ‘Oh, policy, that’s scary, I don’t do politics,’ ” says Kim Carlos of Kansas City, Missouri, who was diagnosed with breast cancer in 2002 at age 30. She encourages survivors to overcome their fears. “Every day, elected officials make decisions that affect our lives. If we don’t make our voices heard, we’re not doing a service to our fellow cancer patients and survivors.”

Nonetheless, the first time can be daunting. “I’m kind of a private person,” says Carolyn Anne Specker, 31, of Queens, New York, who was diagnosed with a rare childhood form of bone cancer called Ewing’s sarcoma when she was 15. “One of the hardest things was telling all of these embarrassing things that resulted from my cancer treatments—my stomach problem, my bladder problem.” But that’s exactly what she did when she met with her state representative in Washington, D.C., to urge him to sign on to the Comprehensive Cancer Care Improvement Act. Inspired to make the Capitol Hill trek as an attendee of a recent CURE Patient & Survivor Forum, Specker found the strength to speak out because “I’m doing it for the greater good.”

Activists should be similarly bold when it comes to talking about policy. Maria Carolina Hinestrosa, NBCC executive vice president for programs and planning and herself a breast cancer survivor, remembers back in the mid-1990s thinking that a layperson could never sit with scientists and discuss research. But now she and other activists do just that. “We can not only shape research, we can improve it, make it accountable, make it relevant.” She is proud of the work that has been done, setting up a research program open to innovative ideas—DOD funding was critical to the research that led to the development of Herceptin® (trastuzumab), an effective drug in patients with an aggressive type of breast cancer.

It Takes Time

“When you’re younger, you think you can conquer the world quickly,” Hinestrosa says. “I have come to understand that this is complex, and it will take many years. But I think it’s good to be impatient. How much more time do I have to make an impact for my daughter, who is 14? That is what keeps me going.”

An unexpected dividend is that grassroots activism can be personally fulfilling as well as politically meaningful. “Every time I tell my story it heals a little part of me,” says Felder, who also uses the Internet to speak out at www.tamikaandfriends.org.

Even when a patient’s prognosis is grim, speaking out can be therapeutic. Andrew Molenda, 30, of Tulsa, Oklahoma, has a rare form of testicular cancer. “I’m probably looking at two years,” says the father of three. But with the support of the Lance Armstrong Foundation, he’s made time to lobby for more government money for cancer research. “My goal is to make my disease not just a thing that happened to me,” he explains, “but something where I was able to make a change to affect other people’s lives.” The feeling that his advocacy may aid others helps him answer the “why me” question. And his meetings with politicians have yielded surprising results. After he spoke to Oklahoma Senator James Inhoff, he recalls, “we held hands and prayed.”

And there is always a new ally. Dennis Wimmert, diagnosed with lymphoma in 2004, has lobbied state legislators to increase the tobacco tax as a way to reduce the number of smokers, among other things. Currently recuperating from a bone marrow transplant in a Houston apartment, the 47-year-old from Alexandria, Louisiana, is upset that uninsured Americans can get free screenings for prostate and colon cancer but then may wait months to see a doctor, if they get to see one at all. Charity hospitals simply can’t meet the demand, he explains. When he voiced his frustration at a meeting of cancer experts and advocates in his home state of Louisiana, the doctors and nurses looked at him as if he were the most politically naïve soul on earth. “You’re right, it’s a barrier,” one doctor told him. “But we’ve been fighting that for years.”
But Wimmert isn’t about to give up. “Why can’t we fix this?” he wants to know. And he’s going to make sure legislators hear his question.