Breast Cancer Advocacy: Making a Difference

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Advances in science and technology have increased the options for treating breast cancer, but it is advocates that have changed the way people deal with this disease. Women in the United States are no longer simply passive patients, but rather they are survivors, informed consumers, advocates and activists who are speaking up for themselves and others and speaking out for issues relevant to the treatment and prevention of breast cancer.

Advocates have a unique and important contribution to make to cancer research, and play an important role in the cancer care setting. They give a “face” to the disease reminding researchers of the human element. They provide input and strengthen research projects, assist in clinical trial design – including development of patient materials – and facilitate community outreach and education.

As the discoveries of basic science have been translated to better clinical treatment, a new sense of hope has emerged. Quality of life now shares the spotlight with quantity of life as breast cancer has shifted from an acute to a chronic condition and as the numbers of long-term survivors has increased. Advocates express concerns about issues affecting their lives beyond treatment. These issues include, accurate diagnosis, the complexity of treatment decisions, access to quality cancer care, informed consent, privacy issues, availability of supportive care treatments, effective communication skills, especially with their physicians and the long term side effects of treatments. Survivors are also concerned about the impact of their disease on spouses and family, on fertility and sexuality, employability and on their long-term survival. The identification of these increasing issues has given rise to a movement that has shifted away from powerless victim to empowered survivor.

Breast cancer organizations have differing primary agendas. Many organizations raise funds to provide support and education services or to support scientific research. Others feel compelled to raise awareness about early detection and treatment while some focus on controversial environmental issues, and prevention or risk reduction. Some organizations have entered the political arena, lobbying for issues related to health care delivery, clinical trials access, and quality cancer care. 

However, during ‘Pink October’ many messages are overlooked as the Pink Ribbon turns the focus overwhelmingly on “early detection saves lives.” There is a staggering array of Pink Ribbon “cause marketing” promotional campaigns and company tie-ins that target every conceivable consumer item “for the Cure”. Many “cause marketing” companies use known or suspected cancer causing ingredients in their products.  This is called “pinkwashing”. Companies need to decide if they want to be part of the problem or part of the solution. More research  on primary prevention of breast cancer is needed.  Currently, most research focuses on detection and treatment with less than 10% of research dollars looking at primary prevention.  
You can make a difference! Ask questions before you buy products with pink ribbons and demand corporate accountability with letter writing and phone calls. Advocacy is a tool for change. Early detection and better treatments are not enough! Despite all of our advances about 25% of the women who are diagnosed and treated for early-stage breast cancer will later learn that their cancer has spread to other organs. Learning to treat early breast cancer so that it doesn’t spread and to manage advanced breast cancer is essential, but, we must learn what causes breast cancer in the first place.  

Join with others through local organizations, such as Breast Cancer Options, state organizations such as the New York State Breast Cancer Network or national organizations and work with community leaders and elected officials at all levels to advocate for regulations and laws that benefit cancer patients.

ATTEND NEW YORK STATE BREAST CANCER ADVOCACY DAY in Albany, NY with Breast Cancer Options .Get the latest news on statewide issues at the New York State Breast Cancer Network’s website: www.nysbcsen.org.   Contact Breast Cancer Options. 845-339-4673 or www.breastcanceroptions.org to learn more about advocacy and see what you can do to help.  

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One Response to “Breast Cancer Advocacy: Making a Difference”
  1. bmb12 says:

    Thanks for outlining some of this!

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