When Corrie Painter was diagnosed with angiosarcoma, an aggressive cancer in cells that line blood and lymph vessels, in 2010, she was frustrated to find how little information existed about the rare malignancy. As a researcher with a PhD in biochemistry, she also was disheartened that her tumor slides sat in storage where scientists could not use them for research. “My whole clinical history was just sitting there, and nobody was learning from it,” she says.
Five years later, Painter helped launch Count Me In (CMI), an initiative that allows people diagnosed with cancer to share their tumor tissue samples for use in research. CMI is one of several patient-fueled research efforts described in the fall issue of Cancer Today, a magazine and online resource for cancer patients, survivors, and caregivers published by the American Association for Cancer Research. Online research platforms like CMI help give everyone an opportunity to participate in research, regardless of where they live.
Cancer Today’s fall issue also explores how people with intellectual or developmental disabilities (IDD) often face difficulty navigating a health care system not designed to accommodate their needs. Due to barriers that prevent people with IDD from undergoing appropriate screening, this population has a higher prevalence of late cancer diagnosis and higher cancer mortality rates than the general public. “For many of those people, it could be preventable, so we’re talking about preventable suffering,” Alyson Mahar, an epidemiologist and health services researcher at Sinclair Cancer Research Institute in Kingston, Ontario, tells Cancer Today.
Another feature article explores how people with breast cancer must make more decisions than ever before. With expanded treatment options, patients must evaluate how each choice could impact their risk for side effects and recurrence.
Additionally, the issue’s survivor profile highlights Mike Herman, who learned to advocate for his care as he went through a decade of treatment for multiple myeloma, which included two stem cell transplants and two clinical trials of bispecific antibodies. A participant in the 2024 AACR ScientistSurvivor Program, Herman now imparts that knowledge to other people with cancer through a nonprofit advocacy group he created.
The new issue helps translate recent policy developments for patients, including how they could benefit from a new Medicaid rule that expands access to patient navigation services. The magazine also offers suggestions for dealing with an insurance denial, as well as lifestyle advice, including how virtual reality therapy can help reduce chronic pain in people with cancer. Plus, William G. Nelson, MD, PhD, director of the Johns Hopkins Kimmel Cancer Center in Baltimore and Cancer Today’s editor-in-chief, writes about why bispecific T-cell engagers could be poised to transform care for several cancer types.
To view content from the fall issue, visit Cancer Today’s website or read the digital edition here.
To stay up to date with the latest in cancer research and care, subscribe to the magazine or sign up to receive Cancer Today’s bimonthly e-newsletter.
The post Cancer Today’s Fall 2024 Issue: How Patients Can Participate in Research, Cancer Care for People With Developmental Disabilities, and More appeared first on American Association for Cancer Research (AACR).
