Breast Cancer Advocacy: Using the Law to Make Change
Stephanie Barr, from Salina, Kansas, was diagnosed with breast cancer in 2010, at age 30. Every spring for the last 3 years, she has gone to Washington D.C. with the National Breast Cancer Coalition to advocate for increased research funding.
She attends a summit organized by NBCC, where renowned scientists talk to participants about important breast cancer research. Then she makes appointments with her state’s lawmakers or their aides.
“Just going out and doing it … you feel really empowered. It’s kind of like a rush,” says Stephanie, who also volunteers for the Breast Cancer Helpline with Living Beyond Breast Cancer. “I feel like I’m really doing something to make a difference.”
In the late 1980s and 1990s, many people with breast cancer saw how effective HIV/AIDS activists were at raising awareness, getting elected officials’ attention and increasing federal funding for research, and they were inspired. They wondered: Could we get similar results for breast cancer?
It was in this atmosphere that breast cancer advocates began to find their voices. NBCC, which was one of the first nationwide breast cancer advocacy groups, led the movement for more federal research dollars. Their efforts resulted in Congress starting to fund the Department of Defense Breast Cancer Research Program in the early ’90s, giving it more than $3.1 billion to date. By partnering with scientists and advocates, the program seeks to fund research that is innovative and has a high impact.
Advocates from a variety of organizations pushed for more access to screening mammograms and other breast cancer tests and treatments. Their accomplishments included:
- In 1990, the Breast and Cervical Cancer Mortality Prevention Act created the Centers for Disease Control and Prevention (CDC) National Breast and Cervical Cancer Early Detection Program. This program provides free mammograms and diagnostic tests to women in need.
- In 1998, the Women’s Health and Cancer Rights Act, which says most group insurance plans that cover mastectomies also have to cover breast reconstruction, was signed into federal law.
- In 2000, the Breast and Cervical Cancer Prevention and Treatment Act expanded the CDC early detection program so that people diagnosed through the program could get treatments paid for by Medicaid. It was conceived of and lobbied for by NBCC.
Many of the same issues those early breast cancer advocates worked on, like finding cures and getting health insurance coverage, are still the focus of today’s advocates.
The federal government is the biggest public funder of cancer research in the U.S. The National Institutes of Health (NIH) does its own medical research and supports researchers at universities, hospitals and other institutions across the country. In 2014, the NIH spent about $682 million on breast cancer research.
The NIH experienced budget cuts during the last few years. But in December, legislation passed by Congress and signed by the president increased its budget by $2 billion. This increase makes up for those cuts, and adds more money on top of it. It’s something many breast cancer advocates are calling a big win.
“This is the most significant progress we’ve made on this issue in a decade,” says Erin O’Neill, senior director of grassroots campaigns for the American Cancer Society Cancer Action Network (ACS CAN). Many of the organization’s volunteers called their legislators and attended local and national events in support of the budget increase. “We engaged over 150,000 volunteers throughout the year to work on this issue,” Erin says. “So I think they all feel not only that they had a stake in this issue but that they really contributed to the outcome.”
In January, President Obama created a White House task force on cancer, led by Vice President Joe Biden, in an effort to “make America the country that cures cancer once and for all.” This initiative, and the NIH budget increase, could bring us closer to a goal set by NBCC. In 2010, through a program called Breast Cancer Deadline 2020, NBCC challenged researchers to know, by Jan. 1, 2020, how to end breast cancer. Their focus is finding a way to prevent breast cancer from becoming metastatic, and finding a vaccine that could prevent breast cancer in the first place.
NBCC encourages supporters to talk to their legislators about how they can help researchers meet the deadline. Volunteers can also get involved in the group’s Project LEAD programs, which prepare them for activities like working with scientists to design breast cancer research and giving presentations at scientific meetings.
Health Insurance Coverage
Advocates are still fighting for more and better insurance coverage for breast cancer prevention and care. Two bills that many breast cancer advocates are now working to get passed into law are the Lymphedema Treatment Act and the Cancer Drug Coverage Parity Act.
Lymphedema, a chronic condition that causes swelling in the hand, arm, breast, chest wall or under the arm, is a common side effect of breast cancer treatment. Lymphedema isn’t curable, but it can be treated with compression supplies, like sleeves and gauntlets. Those supplies aren’t covered by all insurers though, including Medicare. The Lymphedema Treatment Act would make Medicare cover lymphedema compression supplies, with the hope that Medicaid and private insurers would follow.
Today, insurance tends to cover more of the cost of chemotherapy given by IV than of chemotherapy pills. The pills often come with high copays that can add up to thousands of dollars in out-of-pocket costs. The Cancer Drug Coverage Parity Act would require insurers to cover the cost of chemotherapy pills as favorably as they cover infusions.
Other issues many advocates have embraced include speaking out against:
- Environmental factors that may increase the risk of breast cancer. Advocates are pushing for legislation related to fracking, a drilling technique used to release natural gas from the ground, which has been linked to cancer; and chemicals, such as those in some cosmetics and plastics
- Campaigns that sexualize breast cancer, such as “Save the Ta-tas” or “Save Second Base”
Gene patenting, the idea that genes, such as BRCA1 or BRCA2, which are linked to breast cancer, can be owned by a company. In 2013, in a victory for advocates, the Supreme Court ruled that it is illegal to patent human genes in the United States.
Jo Evelyn J. Ivey took part in Living Beyond Breast Cancer’s Hear My Voice: Metastatic Breast Cancer Outreach Program. The program provides tools and training to help people living with metastatic breast cancer make a difference in their communities. Jo Evelyn enjoyed connecting with other women with metastatic disease who, like her, were motivated to make changes.
“I think if you look across the board at all the things that women in Hear My Voice have accomplished, it’s absolutely incredible,” she says.
One of those things is MET UP, an advocacy organization that was started in April 2015 by Hear My Voice participants. Jo Evelyn, who has been living with metastatic breast cancer for about 5 years, is the organization’s legislative director. She works to get laws passed that could help the metastatic breast cancer community.
Last year on Oct. 13, Metastatic Breast Cancer Awareness Day, MET UP held a “die-in” in Washington D.C. About 113 participants lied down on the Capitol Hill lawn to represent the more than 100 people who die of metastatic breast cancer every day in the U.S. Participants also met with about a dozen members of congress or their staffs.
Because about 20–30 percent of those diagnosed with early-stage breast cancer will develop metastatic disease, MET UP and other organizations would like to see at least 30 percent of federal breast cancer research dollars go toward metastatic disease. According to a 2014 study by the Metastatic Breast Cancer Alliance, that number is about 7 percent. MET UP also supports passage of the Ensuring Equal Access to Treatments Act. This legislation would help people on Medicare whose hospitals currently get incentives to use older, cheaper treatments get access to newer treatments that may be more effective.
Other groups that have a big impact on metastatic breast cancer education and advocacy include the Metastatic Breast Cancer Network and METAvivor.
An issue of huge importance to all these groups is how the national database that tracks cancer, SEER, counts cases of metastatic breast cancer. Just 6–10 percent of metastatic breast cancer cases are stage IV at diagnosis, but those are the only ones SEER currently records.
You Can Make a Difference
The first time Stephanie went to Washington D.C. to talk to her legislators, she wasn’t sure what to expect.
“It was kind of scary,” she says. “I’m like ‘I can’t do that.’ I thought, ‘I’m a terrible speaker, nobody’s going to listen to me.’ ”
But a mentor who had professionally lobbied in the past walked Stephanie through the process and her confidence has grown every time she’s done it. She plans to attend this year’s NBCC Advocate Leadership Summit and Lobby Day on Capitol Hill, from April 30–May 3.
Stephanie feels good about having gotten a few of her state’s representatives to agree to sign a bill and about making her voice heard. “The politicians work for you,” she says, so it’s up to you to let them know what’s important to you and how they can help.
“Going to your legislator does make a difference,” says Karuna Jaggar, executive director of Breast Cancer Action, a group that focuses on the root causes of the disease and on producing broad public health benefits, so fewer women develop and die of breast cancer. “I think that a lot of people can feel intimidated, that they need to know the various lines of the bill, or this or that. All you need to do is talk from personal experience.”
Interested in becoming a breast cancer advocate?
- Think about what activities you want to take part in. Options include: calling lawmakers, meeting with them in person, recruiting friends and neighbors to support your cause, and writing letters to the editor.
- Learn about advocacy organizations (The ones mentioned in this article are a good start). Different organizations care about different issues and go about supporting those issues differently.
- If you find organizations you like, contact them to learn how you can get involved.
- If you have metastatic disease, read more about our Hear My Voice program. If you were younger than 45 at diagnosis of any stage of breast cancer, read more about our Young Advocate program.