Advocating for Innovative Approaches to Ending Breast Cancer

Last Tuesday, May 8, was a beautiful spring day in Washington, DC. I spent the day with many other advocates on Capitol Hill visiting our representatives in Congress to ask for their support on two important initiatives in the fight against breast cancer. One initiative is 2015 funding for the innovative Department of Defense Breast Cancer Research Program. The other is a new initiative that would not involve any increase in research funding, but would leverage exiting resources and technologies to move us more quickly towards the ultimate goal of knowing how to end deaths from breast cancer.

The organizing group for “Lobby Day” was the National Breast Cancer Coalition (NBCC), an advocacy organization that includes among its members hundreds of breast cancer organizations from across the United States.  The organization sponsors this day each year when advocates from the member groups meet with their Senators and House representatives to discuss priorities in breast cancer research and treatment. A large proportion of the advocates who participate have themselves been treated for breast cancer, and this is reflected in the issues and initiatives they are most concerned about.

Department of Defense Breast Cancer Research Program

When friends or acquaintances ask about what I’m doing in my advocacy work, I often mention serving as a “consumer reviewer” on panels reviewing scientific research proposals for a cancer research program that happens to be run by the U.S. Army. I’m continually amazed how few people (actually, none that I’ve met outside breast cancer circles) are aware that there is a breast cancer research program under the Department of Defense.

This program was established in 1993 through the determined efforts of advocates. It’s premised on the realization that, if we expect to achieve real breakthroughs against this disease, we need to find a way for the most promising higher-risk, yet higher-reward, types of research projects that wouldn’t otherwise get funded to move forward. The program doesn’t duplicate other federal funding for breast cancer research. Most years it has operated with a budget of $120 million to $150 million. In comparison, the National Cancer Institute allocates about $600 million per year to breast cancer research.

I’ve participated as a consumer reviewer along with scientists and physicians on a number of panels reviewing research proposals over the last seven years. It’s challenging work but incredibly rewarding and a great learning experience. I’ve found the scientists on the panels to be highly appreciative of the advocates’ input.

These are some of the other things that are special about the DOD program:

• The role of advocates is a critical component of the process. We evaluate each proposal from the perspective of what impact it would have for patients.  We only rate highly those proposals that, if successful, would truly make a difference for patients or potential patients in terms of saving lives or improving quality of life.
• The DOD program is flexible. Each year’s funding is fully allocated that year, so the program can quickly move in new directions as appropriate.
• The program is run efficiently, with 90 percent of funds going to research grants.

DOD-funded research has been an important part of the progress that has been made in breast cancer treatment over the last twenty years including, for example, research that led to the development of the drug Herceptin, a targeted therapy which has had an enormous impact in the treatment of patients with HER2-positive breast cancer.

You can read much more about the DOD Breast Cancer Research Program itself and specific research projects it is funding on its website.

 Accelerating the End of Breast Cancer Act

As we discussed with our representatives last week, there has been some progress made against breast cancer over the last twenty years, but it hasn’t been nearly enough. These are few of the facts we pointed out in our meetings on the Hill:

• In 1991, there were 119 deaths per day from breast cancer in the United States. This is down slightly to 110 deaths per day in 2013, amounting to more than 40,000 deaths from breast cancer each year just in this country.
• The rate of metastatic breast cancer at initial diagnosis in the United States has not changed since 1975.
• We don’t know how to prevent breast cancer. Most “risk factors” that we know about, such as age and family history are not modifiable, and those that are potentially modifiable, such as obesity and smoking, are only weakly to moderately associated with breast cancer risk.

These facts make clear that something more than just what we’re doing now is needed if we want to see more significant progress made against breast cancer in the not-to-distant future. The other initiative we discussed is the Accelerating the End of Breast Cancer Act, legislation that is part of NBCC’s Deadline 2020 initiative, which has set a ten-year goal for “knowing how to end breast cancer” by January 1, 2020.

The purpose of the Act is to leverage expertise across a broad range of disciplines including biomedical research, business and advocacy to identify the most promising opportunities for learning how to end breast cancer that may not have received much attention from either the public or private sectors to date. The new research projects that result would obtain their funding through existing programs.

For both of these legislative initiatives, there is bipartisan support and large numbers of legislators who have indicated their support by either signing a letter to the Defense Appropriations Committee (in the case of the DOD Breast Cancer Research Program) or becoming co-sponsors (in the case of the Accelerating the End of Breast Cancer Act). It’s not a simple matter getting legislation to move through Congress these days. But those in the know stress that constituent voices do make a difference, and that is why hundreds of advocates were on Capitol Hill last Tuesday.

For More Information

An excellent recent article in Science Magazine tells the story of how the DOD Breast Cancer Research Program got started and how it’s unique and different from other federal funding for breast cancer research.

The NBCC website provides information on the various elements of the Deadline 2020 initiative. Also on the website are  annual progress reports for the initiative.

Related Posts
Breast Cancer: Where Are We After Twenty Years?
Reflections on Advocating for Change