This perspective was written by Kristen Palma, President, TargetCancer Foundation
In my life I have had the experience of being a caregiver to a loved one who was diagnosed with a rare cancer with no effective treatment protocol due to lack of research. I have also cared for a loved one diagnosed with a more common cancer that had a strong and effective treatment protocol based on years of dedicated research.
The experiences that our family faced and the outcomes for the people we loved were worlds apart and serve as a daily reminder of the vital importance of supporting medical research in all of its forms. It is why TCF exists today. From basic research in the lab, to yes- overhead expenses- which are critical to the functioning of a lab to carry out research, to the administration of life saving treatments and clinical trials to patients, it is imperative that scientific research is not where budget cuts are made.
Watching the indiscriminate and irresponsible cuts to medical research in both academic institutions and the National Institutes of Health (NIH) has been devastating to see both personally and professionally. Listening to decision makers make statements that are consistently factually incorrect lead me to wonder if they have ever witnessed someone they love suffer the devastating effects of any cancer, let alone one that is rare and without a pathway to a cure. If not, they are truly fortunate. But the day will come, as it does for every one of us, when someone they love will be diagnosed with cancer and they too will want access to the very best and most effective treatment. So why stop the truly monumental progress that is taking place in medical research now?
In response to the proposed cuts and the disinformation surrounding them, TCF gathered collaborators who are current patients and caregivers as well as advocates to see how we could spread the word to the general public and to policymakers to highlight the true impact of these cuts. Our goal is to give accurate information based on facts and to relay the personal and real impact on current patients and families- reminding everyone that cancer is not political. It will touch every policymaker, every legislator, every voter, no matter your party affiliation or ideology. No one wants to face what I faced with my husband, Paul, who founded TCF before dying of a rare cancer in 2009 at age 39.
I am truly grateful to Michael Casaus and Naomi Natale of CureMEC: The Myoepithelial Carcinoma Project, Dana Deighton, Katie Doble, and Suzanne Vincze from the Max Vincze Foundation for leading this effort with TCF. Their personal experiences as patients and caregivers reflect the urgency of this effort. Together we have started the Paying With Our Lives: Save Rare Cancer Research advocacy campaign and the 50 Stories From 50 States initiative to give every patient, caregiver, researcher and advocate the opportunity to have their voices heard and to ensure that decision makers understand the impact of their policies.
After 16 years of working in this field, the progress I have seen has been nothing short of astounding. Every day, the landscape is changing for patients with rare cancers, bringing new treatments and giving them time with their families. Each moment and memory counts and patients get those moments because of the scientific work made possible by critical federal funding. We cannot stop this progress now. Raise your voice by joining the Paying With Our Lives campaign today to #SaveRareCancerResearch.