Strong advocacy voices for older adults with cancer are needed more than ever at the federal, state, and local levels.— Beverly Canin
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I have served as a patient advocate in many different ways since I was diagnosed with breast cancer in October 2000. For many years, my advocacy was focused on issues related to breast cancer. Since 2012, I have also been engaged in identifying and meeting the needs of the rapidly growing population of older adults with cancer. I have been gratified to see the value of patient advocates increasingly recognized not only for providing support and education to individuals with cancer or as fundraisers, but more as partners in collaborative efforts to improve the lives of people living with cancer.
Available Programs
Numerous programs provide training and/or opportunities for patient advocates or advocate organizations to interface with the medical community, especially in research. ASCO’s Conquer Cancer Foundation (www.cancer.net) supports Patient Advocate Scholarship Programs, which include a scholarship program to attend the ASCO Annual Meetings and selected ASCO-sponsored symposia, informational sessions to help patient advocate attendees navigate the meetings, and patient advocate booths in the exhibit hall for approved nonprofit patient advocate organizations. The Conquer Cancer Foundation website details a comprehensive list of specific roles patient advocates can play under broad categories such as providing support to individuals living with cancer, raising public awareness, advancing cancer research, improving the quality of cancer care, and addressing legislative and regulatory issues that affect cancer care and research.
The National Cancer Institute Office of Advocacy Relations has established a process where interested staff researchers can be matched with registered patient advocates. The American Association for Cancer Research (AACR) Scientist↔Survivor Program operates at various AACR scientific meetings. The Alamo Breast Cancer Foundation has designed and sponsored a scholarship program for patient advocates to attend the San Antonio Breast Cancer Symposium. The Research Advocacy Network is a nonprofit organization that trains patient advocates to participate in cancer research. The National Breast Cancer Coalition’s Center for NBCC Advocacy Training offers courses and workshops for the layperson to gain knowledge and confidence to become a quality health-care advocate.
The Department of Defense Congressionally Directed Medical Research Programs require the participation of consumers (patients, survivors, family members, and advocates) in their grant review process. The Patient-Centered Outcomes Research Institute requires stakeholder engagement in all of its funded projects. This organization notes that patients, individual patient advocates, and patient advocacy groups are distinctly separate and may contribute differently to any given project.
Older Patients and Clinical Trials
It’s well known that there are many disease-specific not-for-profit cancer organizations that promote advocacy in a variety of ways. However, although there is clearly a need, none focus specifically on older adults with cancer. An exception is the Cancer and Aging Research Group, which was established in 2006 with a mission to “join geriatric oncology researchers across the nation in a collaborative effort of designing and implementing clinical trials to improve the care of older adults with cancer.” Truly grassroots, completely voluntary, and resolutely collaborative, the Cancer and Aging Research Group continues to attract established researchers, clinicians, scientists, and others, as its only requirement for membership is a desire to help older adults with cancer.
When I was invited to join the Cancer and Aging Research Group to bring in the voice of patients, I had been painfully aware for some time of many barriers to care for older cancer patients and the dearth of evidence-based treatment guidelines or resources to aid in treatment decision-making for this population. A crucial need remains for more clinical trials involving older adults with cancer and for recruitment of patients into those trials—a particular challenge because of both systemic impediments (eg, onerous consent forms) and popular misperceptions about clinical trials (eg, unethical experiments). Many of the systemic impediments are compounded by the complications of aging, such as comorbidities including cognitive, hearing, and vision losses.
Patient advocates can help overcome some of the barriers to recruitment by advocating for more streamlined and innovative approaches to consent, collaborations for centralizing institutional review board approvals, and the development of systems for doctors to be more informed about clinical trials for their patients. Surveys have shown that doctors are not telling their patients about available clinical trials. Patient advocates who are most interested in direct support can also establish relationships with individual patients and/or communities to educate them about clinical trials.
Cancer as a Chronic Disease
The 2015 White House Conference on Aging’s Healthy Aging Policy Brief doesn’t even mention cancer in a list of chronic diseases, though the majority of people with cancer are older than age 65, and cancer is a disease strongly associated with aging. It is expected that by the year 2020, about 20 million Americans will be living with a cancer diagnosis. Due to an increasing understanding of the complexity of the disease and improved therapies, many patients remain in treatment for years. Thus, the cancer becomes a chronic condition, which is defined as an illness that lasts a year or more, requires ongoing medical attention, and/or limits activities of daily living.
Cancer must now be considered in any comprehensive list of chronic diseases in the elderly. Resources cited for the list of chronic diseases in the Policy Brief include the U.S. Department of Health and Human Services’ “Multiple Chronic Conditions: A Strategic Framework”1 and the Centers for Disease Control and Prevention’s “Healthy Brain Initiative”2 (developed in association with the Alzheimer’s Association and the Administration for Community Living).
There is also a notable absence of focus on cancer and aging in President Obama’s Cancer Moonshot initiative. Strong advocacy voices for older adults with cancer are needed more than ever at the federal, state, and local levels. ■
Disclosure: Ms. Canin is a member of the Cancer and Aging Research Group.
References
1. U.S. Department of Health & Human Services: Multiple Chronic Conditions: A Strategic Framework. December 2010. Available at www.hhs.gov/sites/default/files/ash/initiatives/mcc/mcc_framework.pdf. Accessed October 20, 2016.
2. Centers for Disease Control and Prevention: Healthy Brain Initiative. Available at www.cdc.gov/aging/healthybrain. Accessed October 20, 2016.
