This past fall, mesothelioma survivors Heather Von St. James and Chuck Ross were invited to participate in a research review panel funded by the Department of Defense. Heather and Chuck were designated as consumer advocates and served alongside a panel of doctors and scientists representing mesothelioma cancer.
As consumer advocates, Heather and Chuck were asked to review research applications and provide commentary from the patient perspective. Their input is an important factor in deciding how funding for cancer research will be allocated. Heather and Chuck’s participation in the panel is part of an initiative within the Congressionally Directed Medical Review Programs (CDMRP).
What Are the Congressionally Directed Medical Review Programs?
Each year, the Department of Defense sponsors the CDMRP, which funds novel health research that other agencies may not fund. One of many programs within the CDMRP is the Peer-Reviewed Cancer Research Program (PRCRP). This program consists of a group of committees that meets to decide how $90 million in funding will be distributed among research organizations. Committee members consist of medical and scientific professionals in the cancer field, as well as advocates who represent the interests of patients.
The CDMRP was founded in 1992 and has since been responsible for allocating more than $14 billion toward cancer research through the PRCRP and its other programs. The CDMRP specifically focuses on cancers that disproportionately affect service members and their families. Mesothelioma was one of several diseases represented at this year’s PRCRP meeting, as well as leukemia, brain cancer and pancreatic cancer.
Although mesothelioma is a rare cancer, veterans account for 30% of diagnoses in the United States. Members of the military were likely to experience asbestos exposure prior to the 1980s, when asbestos was commonly used on military bases and shipyards. Veterans are still being diagnosed with mesothelioma, due to the 10 to 50-year latency period of the disease.
A Focus on Mesothelioma
Heather and Chuck were able to represent mesothelioma patients on the CDMRP. Heather served once before in 2018, and it was Chuck’s first year in the position. They were nominated by the Mesothelioma Applied Research Foundation (MARF).
The importance of breakthrough mesothelioma treatment hits close to home for both advocates. Heather is a 14-year survivor of the disease, and Chuck was diagnosed with pleural mesothelioma in November 2016.
Both Heather and Chuck were patients of the late Dr. David Sugarbaker, a world-renowned thoracic surgeon. After undergoing chemotherapy and invasive surgery, both patients outlived the average prognosis of the disease. Now, Heather and Chuck share their voices on behalf of mesothelioma patients to help find a cure.
Alongside the consumer advocates, the mesothelioma committee was comprised of six mesothelioma-specific doctors and researchers and a lead scientific officer.
The committee was responsible for analyzing 16 research proposals and evaluating which applications they felt were the most promising. Statisticians, researchers and medical experts were available to answer science-related questions, while Heather and Chuck were consulted on quality of life during treatment.
“They would talk about the scientific validity of the proposed research and that was very enlightening,” noted Chuck in an interview with Mesothelioma.com. “They wanted to make sure that what they were proposing could be statistically measured or evaluated.”
After several months of discussing and evaluating the research applications, the entire committee rated the proposals before passing them off to a higher panel that will meet in the coming months. The next panel will decide which proposals will receive funding.
By approaching the research proposals from multiple perspectives, the committee ensures patients are not left behind in the race to find a cure. Heather and Chuck expressed they were met with nothing but respect and appreciation from other committee members.
“We’re not medical experts in mesothelioma,” Heather said. “We don’t understand the cellular components of it, but we understand the impact on life. I think they really took what we said to heart.”
The Future of Mesothelioma Research
After reading through this year’s applications, Heather and Chuck observed a focus on immunotherapy treatments. Immunotherapy has been a promising form of treatment for mesothelioma patients in the past few years. Clinical trials involving pleural mesothelioma patients have demonstrated success by significantly increasing life expectancy.
“It’s really neat to see where research is going, and there’s far more interest in the field of mesothelioma now than there was even three years ago,” Heather told Mesothelioma.com.
The funding allocated by the program will allow mesothelioma research to be explored even further. In many cases, additional funding would allow researchers to push their research projects out of the laboratory and into clinical trials.
Mesothelioma is an aggressive form of cancer, with an average prognosis of 12 – 21 months. Research funding for this cancer is crucial for families who are hoping for more time together.
The CDMRP provides a platform to bring passionate experts together who can drive real change in the cancer field. More than anything, Heather and Chuck expressed leaving the experience with feelings of hope for the future of treatment.
“There is a lot of interest in mesothelioma research and that is exciting as a patient. Even if some of the research was far-fetched, what gives me hope is that people aren’t putting it on a back shelf,” Heather said. “People want to find a cure for this disease and they are working toward it. It’s so vital that the funding keeps going and that they keep doing that.”
