The post below was written by Toni Kay Mangskau, clinical trials referral coordinator at Mayo Clinic Cancer Center and an active volunteer for the American Cancer Society and the National Patient Advocate Foundation.
September 2014 was the 10th anniversary of the death of my brother-in-law, Bruce, from cancer. I carry close to my heart a family conversation about Bruce urgently looking for any clinical trial opportunities in the world so he could possibly have more time to live. Unfortunately, his health declined and he was hospitalized in intensive care. As I walked into his hospital room, Bruce was surrounded by his wife, mother and children. Except for the medical machines, there was a deep silence in the room as we struggled for words. All I could utter was “Bruce, it's Toni,” as the tears streamed down my face and I held his hand. He died within a short while at the age of 48, leaving my sister a widow with two young children.
It was during our time of grieving that I received a call from Mayo Clinic offering me an interview for my current position as Cancer Center clinical trials referral coordinator. Through the years in this position, I have learned how to turn my family’s struggle into something positive. I have learned how to be a voice not only for Bruce, but for the thousands of patients I talk with every year looking for clinical trial opportunities. The basic message is: We need more research.
Typically, medications or treatments are studied for about six to seven years in the laboratory and then seven to eight years in clinical trials before being approved by the Food and Drug Administration. Recently, there has been an effort to speed up the process of taking what is learned in the lab to our patients and what we learn from our patients back to the lab. This is called translational research or may also be referred to as taking research “from the bench to the bedside and from the bedside back to the bench.”
Researchers may explore an idea in the lab only to be unable to secure funding to open a clinical trial for people. Or, we may have a study underway and have positive findings with plans to move to the next phase, only to struggle to secure research funding. By the time funding is secured, the imaging technology, laboratory testing or standard treatment regimens included in the study design may be outdated. The study then has to be modified and new funding has to be secured. This delays study ideas from moving forward and delays the development of new treatments for patients.
An important message to share with others is the need for more research funding to prevent such delays. I have learned how to speak out and advocate for patients. As an active volunteer with the American Cancer Society and National Patient Advocate Foundation, when I meet with elected officials, my message is clear: We can do more.
Think of the power we have to make changes if we all join together with a united voice. As parents, grandparents, children, siblings and in-laws of people touched by cancer, we can all find our voice to express the need for increased research funding. Please consider contacting your elected officials or joining an advocacy organization to speak out on behalf of your loved ones and the need for more research funding. We can do more.