Research Not RibbonsThis hard worker has become an advocate for metastatic-specific research with a mantra, “Research, not Ribbons.” Here’s how she describes her experience.
“When I was an early stage patient, I bought into the pink rah-rah breast cancer trope. I did the Komen Race for the Cure and American Cancer Society Relay for Life. I “saved the tatas” and “fought like a girl”. I embraced the pink. When I was diagnosed with metastatic disease and started on the path to becoming an advocate, I learned how little of the money raised by these big organizations goes to research, and how little federal cancer research dollars goes to metastatic-specific research. As I became involved with METAvivor and METUP, I began to speak out against pinkwashing and to demand that organizations that tout themselves as being “for the cure” spend more money working towards that end than they do on marketing and executive salaries. And over the past couple of years, I have seen a change, not as big or as rapid as we in the metastatic community would like, but a change nonetheless. The executive director of my local Komen affiliate reached out to me to see what they could do better for the metastatic community, and took to heart my observation that all the pink and talk of “survivors” left out men with breast cancer and those of us with metastatic disease; the Reno RFC has as many purple balloons as they do pink, and “forever fighters” are recognized and honored along with “survivors.” National Komen is directing more of their budget to research and more of that research budget to metastatic-specific research. The new CEO, Paula Schneider, has met with me and other leaders in the metastatic advocacy community and we hope this dialogue will lead to positive change. And if not, then we will continue to use the power of social media to demand that change.”
Ensuring the Patient’s Voice is Heard: Reviewing GrantsDr. Shanahan also works with the Department of Defense Breast Cancer Research Program and has been accepted in the role of the consumer reviewer. She joined her first panel in January 2017 reviewing grants for breast cancer research. I asked her if she has been able to push for more metastatic research in that role.
Reviewers for the Department of Defense, whether consumer reviewers (patients) or scientific reviewers (oncologist and PhDs), don’t have any control over what applications are received or triaged for this level of review. However, I can assure you that the voice of the patient is heard. I have often commented on how a particular application may be interesting science, but it won’t help keep metastatic patents alive longer or with a better quality of life.”
Activism to Improve Clinical TrialsDr. Shanahan has also raised her voice to improve the clinical trial process, especially clinical trial eligibility requirements as well.
“Most current clinical trials only enroll what I call the metastatic cancer “olympians”: the healthiest of the dying, those who are on their first or second line of therapy, who have limited metastases, who don’t have brain mets, who don’t have other diseases like diabetes or high blood pressure. Men are often excluded. Clinical trials need to be more reflective of the population for whom the medications are intended. Recently ASCO, Friends of Cancer Research, and the FDA published papers supporting broadening of clinical trial eligibility requirements.”And she is also trying to get clinical trials to be less burdensome to patients.
“Another way in which clinical trials need to be improved is logistical. Most trials are held in academic medical centers in large cities, requiring patients to travel to the trial. Sometimes patients have to go to the trial center for routine monitoring labs; I spoke with one patient who had to drive 6 hours round trip to have a blood test, a blood test that could have been drawn in her town and express mailed to the research center. Community based oncology centers and hospitals say that participating in trials is too burdensome, due to regulations, but this is not an insurmountable problem. The research center and the local center could sign a memorandum of understanding, essentially making the local center an extension of the research center for that study. The local oncology team could then administer the trial drug, labs and imaging could be done locally, and the patient might only need to go to the”mothership” occasionally. This would allow for not only increased participation in trials, but increased diversity as well.”
Activist and ResearcherFinally, Dr. Shanahan is presenting research at the American Association of Cancer Research.
I am thrilled to have been selected for the scientist<->survivor program at AACR. We advocates will be able to learn about cancer biology, interact with researchers, participate in working groups to explore, challenge questions, and will also have posters in the poster session. My working group’s challenge question is on the biologic complexity of cancer: how can other fields like physics, math and evolution help us understand cancer. My poster will be on how METUP has learned from the HIV/AIDs group ACT UP and has modernized their street protests into using social media to effect change in the metastatic breast cancer space.”
Learning Never Ends As An ActivistEven for a physician, what’s happening in cancer research is challenging.
“I thought I was finished with homework when I graduated from medical school all those years ago! I may be a doctor, but the concepts being explored in cancer research today were not even imagined all those years ago. Learning never ends, especially if one wants to be an effective advocate.”Dr. Shanahan’s wish and hope is that more money will go to metastatic-specific research, not just for breast cancer but for all cancers. Her advice?
“Advocates can talk to their elected representatives about the need for more funding for metastatic specific research, and Congress can stipulate that metastatic disease, regardless of cancer type, should receive a bigger portion of the pie.”
For more on Dr. Mary Kelly Shanahan: From Physician to Patient: Dr. Kelly Shanahan Part 1