Get active in cancer advocacy, fight for increased medical research funding, and we won't need cancer awareness ribbons.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
I appreciate the power of the ribbon. It is an easy-to-recognize symbol, and an important tool in promoting cancer awareness. Early detection and prevention is the key in several cancers. My gynecologist once remarked, "Almost no one dies of cervical cancer if they get regular pap smears." And if colon cancer is caught early, during a routine colonoscopy, pre-cancerous polyps can easily be removed and debilitating progression prevented. But some cancers, like breast cancer, are lurking beasts. Breast cancer, even after successful treatment, can sit silently for years, sneaking back to penetrate bones, brain, lung, or liver — ultimately killing the unlucky victim.
Cancer survival rates are reported based on five-year survival. The five-year survival rate of breast cancer is 91 percent.1
The truth, though, is that 30 percent of those diagnosed at an earlier stage of breast cancer will eventually develop stage 4 metastatic breast cancer. Stage 4 breast cancer has a survival rate of zero. But in spite of the prevalence of metastatic breast cancer, the disease gets very little funding for research — roughly 7 percent of the breast cancer research investment.2
The pink ribbon has done a lot of good. It has reminded people to get screened, and it has helped to raise a huge amount of funds. But at the same time, it has been used to raise money for purely corporate pockets, including the pockets of several prominent breast cancer charities. It has become a symbol of the idea that everything will be OK, breast cancer is only an annoyance, just a year out of your life, and you'll go on happily from there. The pink ribbon as a brand is a misrepresentation of the truth of breast cancer. And, most importantly, it is not a cure.
What the ribbon should represent is the need to fund medical research in order to save lives. Cancer continues to be the second leading cause of death in the U.S., behind heart disease.3
Lung is the greatest cancer killer, followed by breast cancer for women and prostate cancer for men, leaving colon cancer as the third greatest killer.1
All of these cancers have their own ribbons (white for lung cancer, blue for colon cancer, pink for breast cancer and light blue for prostate cancer), but still, millions die from these diseases every year.
Cuts In Medical Funding
Yet, in spite of these death rates, medical research funding in the U.S. has been cut every year since 2004, according to a 2015 study from the Journal of the American Medical Association (JAMA). Cuts in medical research funding in the U.S. has mostly hurt early-stage research, specially "proof-of-concept research," which demonstrates the feasibility and usefulness of a treatment. This means some potentially life-saving discoveries never go further, due to lack of funds.4
A big part of the reason for the cuts is due to the economic downturns of the early 2000s, and an increasing emphasis on national security following 9/11.
As a co-author of the JAMA study states, "If the U.S. wants to ensure that the health of its citizens is taken care of in the future, or that research in the country won’t be hindered by non-U.S. patents, the U.S. needs to increase spending in biomedical research."
The cuts continue. The Department of Defense Congressionally Directed Medical Research Program (CDMRP), a peer-reviewed research effort studying several diseases such as prostate, breast, lung and ovarian cancer, multiple sclerosis, spinal cord injury, and autism, is the next target. Sen. John McCain (R-Ariz.) has introduced Amendment 1482 to the Senate to cut this program. The vote is slated to happen on Amendment 1482 very soon on the Senate floor (contact your Senator right now
Becoming An Advocate
What can you do to push for the restoration of funding for life-saving medical research? Certainly, the American Society of Clinical Oncology (ASCO) has made this one of their major issues, creating the ACT Network
to help regular folks like you and I become advocates. ASCO also offers a helpful guide to Being a Cancer Advocate
, along with a link to the Coalition of Cancer Cooperative Group's list of advocacy organizations
. The list is lengthy but obviously does not cover the entire scope of advocacy groups. For instance, metastatic breast cancer groups such as METAvivor
and the Metastatic Breast Cancer Alliance
are missing from this list.
But in addition to working with an advocacy group, research organizations often seek patient/consumer perspectives on proposed or ongoing research.
The DOD CDMRP has its Consumer Reviewer program where consumers read and evaluate research study applications for relevance to the consumer community's needs and concerns.
NCI's Research Advocacy program looks to incorporate the collective patient perspective into NCI research and help keep NCI research focused on patient benefits and outcomes.
The FDA Patient Representative Program allows patient representatives the opportunity to advise regarding drugs, devices, and biologics currently being considered for approval.
Social Media and Advocacy
Finally, social media has become increasingly important in healthcare, with doctors, researchers and patients from around the world joining in disease-specific Twitter chats to exchange ideas, information and experiences. Twitter communities like #BCSM (breast cancer social media) and #LCSM (lung cancer social media) hold regularly scheduled topic-centered chats.
The hashtags not only provide quick access to information, but have begun to be used as an advocacy rallying cry. Tagging a Tweet with #BCSM serves as a call to the breast cancer community, and helps bring the realities of living with cancer to the medical community's attention.
“When you see two women in the middle of the night having a real raw conversation about their chemotherapy side effects, it is very different from what you see in the office,” says Dr. Deanna Attai, clinical professor of surgery at the David Geffen School of Medicine and co-moderator of #BCSM.5
In addition, cancer advocates are using social media hashtags as a call to action or to coordinate advocacy efforts. Metastatic breast cancer advocates, for instance, have begun to use the hashtags #PinkIsNotaCure and #DontIgnoreStageIV to highlight the group's underserved reality and to call for more equal funding of metastatic cancer research. Healthcare social media has become such a movement, the Symplur Hashtag Project
was created to provide a taxonomy for healthcare hashtags.
Every Little Bit Helps
Whatever way you get involved, even the smallest effort will go a long way. Sign up for ASCO's ACT Network or contact your Senator or Representative directly. Talk about your cancer experience using a disease-specific hashtag on Twitter, and let the world know that we are more than just a ribbon. Apply to be a patient representative and provide invaluable patient perspective to researchers. However you choose to fight, fight. Fight for medical research funding. Fight to demand a cure. Fight to stop cancer from killing millions more worldwide. Fight so that we no longer need cancer awareness ribbons. Ribbons are not a cure.