The Institute of Medicine (IOM) recently released a report commissioned by Congress, Ovarian Cancers: Evolving Paradigms in Research and Care. The report provides an in-depth look at the state of ovarian cancer in the United States. While significant progress has been made in the fight against ovarian cancer in the last few decades, the report highlights the urgent need for much more advancement to be made in research, treatment, prevention, care and diagnosis. One staggering statistic highlighted in the report is less than one-half of women with ovarian cancer receive standard of care, which can negatively impact survival.
“We applaud Congress for hearing the ovarian cancer community’s requests for more information about all aspects of ovarian cancer, and for understanding the need for this report. This report shows us how much we still need to learn, and provides a roadmap of areas we need to take action on, including addressing barriers preventing optimal diagnosis, treatment and care. It reminds us that ovarian cancer patients need real support and trusted guidance along their journey for better outcomes,” said Calaneet Balas, Executive Vice President, Ovarian Cancer Research Alliance (OCRFA).
In addition to making specific recommendations in the areas of biology, risk assessment and screening, diagnosis and treatment, and supportive care, the IOM report makes the following overarching recommendations:
- High-grade serous carcinomas need to be given priority in research
- More subtype-specific research is needed to differentiate subtypes
- Collaborative research is essential to the future of ovarian cancer
- Sharing of knowledge and implementation of evidence-based interventions is crucial
These research-focused recommendations touch on many aspects of investigation already being tackled by OCRFA-funded researchers. “As the world’s leading private funder of ovarian cancer research, OCRFA takes seriously its responsibility to ensure that the research we fund is going to make the biggest impact. The IOM report validates OCRFA’s research strategy,” said Jeff Boyd, PhD, Chair, OCRFA Scientific Advisory committee.
The IOM report highlights many issues, not just in research, that need to be addressed along the continuum of care for ovarian cancer. In 2014, the Ovarian Cancer Research Alliance convened a group of survivors, doctors, caregivers and policy makers to have an open conversation about the needs of ovarian cancer patients, from prevention through end-of-life care. The results of that conversation were put together to create the Ovarian Cancer Care Continuum. The IOM report found areas for improvement across all the areas identified; these insights will inform OCRFA’s metrics and federal advocacy agenda in the future.
The IOM report also helps identify areas of state policy that need to be addressed in order to overcome some of the barriers found. In September 2015, OCRFA released 50 States of Teal: Ovarian Cancer Care Across America, which provided an in-depth look at each state’s policies on 10 metrics along the Ovarian Cancer Cancer Continuum. These metrics span the entire continuum of care, including prevention, diagnosis, treatment, survivorship and end-of-life care. Much like the IOM report, 50 States of Teal found that although policies impacting ovarian cancer have come a long way, there is still much more progress to be made for every woman, regardless of where she lives, to have the best possible outcome for ovarian cancer.
The IOM Report, Ovarian Cancers: Evolving Paradigms in Research and Care, was funded in part through the advocacy efforts of the Ovarian Cancer Research Alliance and the efforts of our champions on Capitol Hill.
The Ovarian Cancer Research Alliance (OCRFA) is the largest global organization dedicated to advancing private ovarian cancer research, advocating for increased federal research and awareness funding and further policies that support women and their families before, during and after a diagnosis. OCRFA, formerly the Ovarian Cancer Research Fund and Ovarian Cancer National Alliance, has led the way in advocacy, research and support for women and families for over 22 years.