Clinical trials are the engines driving medical progress and for ovarian cancer patients, often offer the best hope for individual treatment. But alarmingly, fewer and fewer women are participating in clinical trials for ovarian and other gynecologic cancers.
Between 2011 and 2015, there was a 90 percent reduction in patient enrollment in phase III gynecologic cancer trials under the National Cancer Institute’s Cancer Therapy Evaluation Program (NCI CTEP). In other words, six years ago, a woman with a gynecologic cancer was 10 times more likely to participate in one of these trials than she is today.
That’s why I partnered with my Democratic colleague Rep. Jamie Raskin (D-Md.) to lead a congressional letter to the House Appropriations Committee requesting language directing the National Cancer Institute (NCI) to address the crisis in gynecologic cancer clinical trials.
The stakes are particularly high for ovarian cancer, which is the deadliest gynecologic cancer and fifth leading cause of cancer deaths in U.S. women. As the National Academy of Medicine found in a 2016 review, there remain “surprising gaps” in the fundamental knowledge and understanding of ovarian cancer.
Treatment options for ovarian cancer are limited, chances for recurrence are high, and the five-year survival rate has long remained static at less than 50 percent. Faced with this prognosis, the opportunity to enroll and participate in clinical trials is often a lifeline for ovarian cancer patients and their families.
My constituent and friend, Laura Forte, knows all too well the challenges facing women diagnosed with ovarian cancer and the unique opportunities clinical trials can provide for patients and their families. Laura’s sister, Denise, was diagnosed with Stage IV ovarian cancer in 2011.
Before her devastating diagnosis, Denise was an incredibly fit, active woman with a thriving medical practice who always found the time to be a bossy older sister to Laura. Denise was one of the 85 percent of women who are diagnosed after the cancer has metastasized because the symptoms, if any, are so vague.
Upon her diagnosis in July of 2011, doctors told Denise that with standard chemotherapy, she would only live a year. After receiving this devastating news, Denise vowed that she wasn’t going down without a fight.
Clinical trials were vital to Denise’s survival. Following her frontline chemotherapy treatment, Denise entered her first phase I clinical trial and went on to participate in additional trials thereafter. While none resulted in eliminating the cancer from her body, the trials she participated in gave her the gift of time. And just as valuable, her quality of life remained high.
Denise put it best when after a night of corn hole with Laura and their sons, she whispered into Laura’s ear, “I’ve been able to make more happy memories for our boys.”
Denise’s experience illustrates the value of clinical trials to extending an individual’s life and buying them and their loved ones time to create precious memories.
And yet, adult oncology trials have long struggled to recruit patients. Evidence shows that a number of factors are to blame – from high out-of-pocket costs for patients to a lack of awareness in providers and perceptions around safety and risk.
For many cancer patients, however, the overarching issue is a general lack of availability in open trials for their stage and histology. A 2017 review of the clinical oncology landscape found that “studies consistently show that once a patient has access to cancer care, the absence of an available clinical trial precludes participation for about half of all patients.”
Denise lost her battle and died earlier this year — and while her life was extended by six precious years thanks to clinical trials, her death emphasizes that more progress is needed to make long-term survival a possibility for all women diagnosed with ovarian cancer.
The current downward trend in clinical trial participation for ovarian and other gynecologic cancers not only translates into missed opportunity for today’s patients to receive potentially life-extending treatment, it slows the engine of progress and delays breakthrough discoveries that could benefit the patients of tomorrow.
I will continue to fight to bring these issues to the forefront in Congress and continue the increase in funding we have put forward to advance treatments and cures. I appreciate the partnership of the Ovarian Cancer Research Fund Alliance (OCRFA) in advocating and advancing clinical trials and better treatment and the expertise and passion they bring to this important mission. I look forward to continuing this fight with OCRFA and working together to end ovarian cancer.
U.S. Rep. Barbara Comstock represents the 10th District of Virginia and is the only female member of the Virginia Congressional Delegation. The Ovarian Cancer Research Fund Alliance (OCRFA) awarded her the “Carolyn Pultz Brown Advocacy Award” this year for elevating the issue of clinical trials and directing the National Cancer Institute to address the decline in patient participation in gynecologic cancer clinical trials.