Tiffany Stout has been advocating for the prevention and cure of ovarian cancer since she was diagnosed in her late 20s. Her diagnosis was atypical for two reasons—she was diagnosed with low-grade ovarian cancer, a rare form that “grows and responds to treatment in ways that make it a fully unique type of ovarian cancer.” The second distinction in Tiffany’s diagnosis was her age. According to the American Cancer Society, the average age of a patient at the time of diagnosis is 63 years old. Thankfully, Tiffany is almost ten years from her diagnosis and treatment and has dedicated her free time to advocating for individuals and communities impacted by this disease.
Because of systemic misogyny in healthcare, women – especially those dealing with symptoms that mimic menopause – are often dismissed. This delays diagnosis, which delays treatment. So you have to advocate for yourself often and loudly. That conversation has not changed. It puts more responsibility on the patient, but there is no other option.
Through her cancer experience, Tiffany learned the importance of self-advocacy: “It is so frustrating for me – I have been involved with the NOCC since I was diagnosed, and the running thread is advocating for yourself. Because of systemic misogyny in healthcare, women – especially those dealing with symptoms that mimic menopause – are often dismissed. This delays diagnosis, which delays treatment. So you have to advocate for yourself often and loudly. That conversation has not changed. It puts more responsibility on the patient, but there is no other option.” As a volunteer with the National Ovarian Cancer Coalition, Tiffany supports people who are just diagnosed, are in treatment, or who are returning to treatment. She guides them in advocating for themselves and asking for what they need.
Tiffany has also taken her advocacy on a different path: influencing research. While she is grateful for the individual support she received while undergoing treatment and continues to support people in the same position, Tiffany wanted to do something that could impact more people and change the trajectory of patients diagnosed with ovarian cancer. It was as a consumer reviewer for the Ovarian Cancer Research Program (OCRP) under the Congressionally Directed Research Programs that she found an opportunity to do just that. This program builds panels of patients with lived experiences, scientific experts, and researchers to read clinical research proposals and decide which ones should receive funding from the federal government. Tiffany read through research proposals with particular questions in mind: what can we fund right now that will make an impact? How does that impact get distributed? Would this research apply to a trans person? Would this research be helpful to a low-grade ovarian cancer diagnosis? Through this project, housed in the Department of Defense, Tiffany and other people who had or have ovarian cancer get the opportunity to influence research that could make a tangible difference in the experience of cancer patients and hopefully save lives.
A unique and heartbreaking aspect of Tiffany’s advocacy work is that many of her collaborators in the NOCC pass away before seeing the fruit of their labors. When asked about an advocacy win she was particularly proud of, Tiffany answered not with something she had done herself but with what a fellow volunteer, Molly, had accomplished. Molly has passed, but Tiffany is “still so proud of her.” Because of the typical age demographics of ovarian cancer, there was no space for young women to gather and form community. Faced with distinct issues associated with their disease like loss of fertility, starting careers, and the challenges of going through menopause well before their contemporaries, Molly determined these women needed a group where they could talk, vent, and commiserate. She advocated for this group within the NOCC and now women, all of whom were diagnosed under the age of thirty, gather from all over the country. The group is thriving.
Tiffany’s advocacy takes two tracks, the individual and the community. By walking patients through self-advocacy, she ensures individual patients aren’t alone. But for Tiffany, “research is the root of change.” By contributing to the OCRP, Tiffany hopes she’s saving people from experiencing the same cancer journey she’s been on.
Tiffany’s advocacy takes two tracks, the individual and the community. By walking patients through self-advocacy, she ensures individual patients aren’t alone. But for Tiffany, “research is the root of change.” By contributing to the OCRP, Tiffany hopes she’s saving people from experiencing the same cancer journey she’s been on.