Breast Cancer Activism: Standing up for People over Profit
By Christine Cupaiuolo — May 1, 2008
Our Bodies Our Blog has invited the folks at Breast Cancer Action to write monthly guest posts on breast cancer and related issues. We welcome their first entry!
by Pauli Ojea
In the late 1980s, a group of women in a breast cancer support group decided it was time for change. These women, who met regularly to share information and to support each other through their experiences, felt there was more they could do, more they needed to do. Frustrated by the lack of reliable information about the disease and the lack of support most women with breast cancer received, they wanted to change the situation for all women facing breast cancer.
So, in a San Francisco living room in 1990, the women set out to do something about it: They formed Breast Cancer Action (BCA).
Their goal was to move breast cancer from an individual woman’s private medical crisis to a public health emergency. The founders put their political know-how, passion and courage to work in order to bring national attention to what was then a rarely mentioned issue.
Fast-forward to 2008. BCA is now a national education and advocacy organization with 19,000 members, a 10-person staff, and hundreds of activists and volunteers in the United States and abroad.
Although breast cancer has received a lot of attention, the problem has not been fixed. And BCA is still here to help change things. Sadly, all but one of the original founders have passed away, but the vision set for the organization almost 20 years ago lives on.
BCA continues to work for change on the political and social issues that have a significant impact on this disease. One of BCA’s biggest priorities is advocating for more effective, less toxic treatments for breast cancer patients. Central to this work is the role of the FDA — the agency that can help, or hinder, the adoption of these treatments.
There’s been a lot of press coverage lately about the FDA’s failure to do its job. In addition to concern that the agency is overstretched and under-funded, there are also concerns about the overwhelming influence of the pharmaceutical industry. The impact of this influence can be felt in many ways. For example, drug companies are currently trying to convince the FDA to loosen regulations on off-label marketing of drugs.
Off-label means that the drug is being prescribed for a condition for which it has not yet been approved. Although it’s legal for a doctor to prescribe drugs off-label, current FDA rules don’t allow drugs to be marketed this way, since approval is based on clinical trials for specific uses. But the drug companies now want the right to market drugs to doctors for unapproved uses.
Why does this matter? Drug company reps would be able to visit your doctor (perhaps over an expense-account lunch), talk about other problems their drug could be used for (other than those for which it’s been approved), and leave behind medical journal articles depicting the drug’s benefits in unapproved settings.
While such information may seem beneficial, remember that drug companies are often involved in the studies the journals are covering — sometimes disclosing their involvement; sometimes not. Besides, if there were enough research to clearly demonstrate the safety and efficacy, the drug would be approved for this use. But drug companies are not as comfortable advertising this point.
Of course, it’s in the drug industry’s best interest to see their drugs used for more diseases: More use translates into bigger profits.
The example above is just one of the many ways the pharmaceutical industry attempts to get its way at the FDA. BCA has urged the FDA to make the right choice for public health by not loosening regulations on off-label marketing. The FDA will make its decision soon.
We need less pharmaceutical company influence in health care decisions, not more. For the FDA to do its job well, and to effectively protect the public’s health, the balance of power at the agency needs to shift away from the drug companies and toward the interests of patients.
Pauli Ojea is the community organizer at Breast Cancer Action, where she mobilizes people to do something besides worry. To learn how you can join BCA in speaking up for public health over private profit, click here.
I am an advocate for cancer and live in Virginia. I was wondering if you knew of any women’s health legislation currently in the 110 Congress. I lost my mother to breast cancer in 1997, and have lost too many friends to breast cancer. I am very involved with Relay for Life in my area.
In addition, do you know the status on the Lifetime Patient Protection Act? The last I heard it was sent to subcommittee in Jan 2007 by the house HR119, and the Senate subcommittee in May o7.
I write for a women’s club newsletter and would like to include any information on legislation that the women of the club could get behind.
Thank you in advance for any help you can give.
Thank you for taking the time to write and help inform other women about important health issues.
There was a hearing on the Breast Cancer Patient Protection Act in May 2008.
BCA has not taken an official position on this bill; we’re not against the effort, but we also are not working to actively support it. We do not believe that ANYBODY should have to rushed out of the hospital after a major surgery, and that instead of supporting piece-meal legislation, we should be working toward assuring universal access to quality health care for all patients.
There is a universal health care bill (HR 676) that would cover mastectomies as well as all other women’s health care and breast cancer needs. This is the type of health care policy we would like to see for this country.
Thanks again for your efforts to educate and activate the public.
All the best,