Patient advocacy and support groups for cancer patients come in all shapes and sizes. The list is long and encompasses many types of cancer, from the most common to the rare. Some groups offer support, some offer advocacy, and others offer a blend of the two. Depending on the individual group, patients can find a wide range of help, including information on the latest developments in cancer research, participation in clinical trials, the maze of insurance coverage, management of side effects of treatment, political lobbying on behalf of funding for research, and emotional and psychological support.
Despite the existence of these groups, which help cancer patients with virtually every issue that they can face, only a small percentage of patients take advantage of what they have to offer. And unfortunately, there are still some oncologists who view the advocacy and support groups with suspicion and do not refer patients to them.
The Oncologist’s Perspective
“From the oncologist’s perspective, advocacy is important in this era of marked change for community oncologists, with declining reimbursement to providers and increased cost-sharing for patients for cancer drugs, less opportunity for satellite clinics, and an increasing number of cancer patients with fewer providers,” said Lee Schwartzberg, MD, Chief Medical Officer of the West Clinic in Memphis, Tennessee.
He said oncologists and patients should take every opportunity to utilize advocacy groups regarding the issues that are important in this climate. These issues include paying for drugs, access to oral drugs, and access to care.
Lee Schwartzberg, MD
Four out of every 5 cancer patients are treated in their community. “Patients and providers each need a voice to reflect the current reality of cancer care delivery,” said Schwartzberg.
Oncologists and advocacy/support groups have different sets of knowledge and expertise. When they share their knowledge and expertise, both sides are better equipped to enhance or improve cancer survivors’ lives and experiences, said Elizabeth Edsall Kromm, PhD, MSc, adjunct assistant professor in the Department of Health, Behavior, and Society at the Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland.
Oncologists and advocacy groups are complementary and can work hand-in-hand, she said. For example, oncologists are well informed about the full range of treatment options, which ones to use in which setting, and the side effects to expect. Through their work in counseling patients, advocacy groups are aware of patients’ concerns and the key questions they have about cancer treatments. Having access to oncologists’ knowledge about treatments allows advocacy groups to have the most up-to-date information when counseling patients. According to Kromm, advocacy groups are well informed about the barriers that patients face when returning to work, and oncologists can use this knowledge in discussing posttreatment care plans.
Insurance coverage is another example of an important area in which knowledge-sharing is helpful. “Oncologists and their billing staff are knowledgeable about the types of treatments that are covered by healthcare plans,” said Kromm. “Providers can share that information with advocacy groups, which can then mobilize to lobby for changes in policy and legislation that address emerging problems. As a hypothetical example, health insurance may cover 4 lymphedema treatment sessions when in fact more are needed.”
She added, “Obviously, policy recommendations regarding covered treatments should be based on current clinical guidelines, but providers’ insights on the patient experience is helpful for advocates working to achieve policy change.”
Do Patients Actually Use Support Groups?
Whether a patient chooses to access help from one of these groups depends mainly on his or her coping style. When faced with a diagnosis of cancer, patients can be broadly characterized as either “minimizers” or “anxious information seekers,” said Musa Mayer, a breast cancer survivor who oversees several advocacy-related Websites. These coping styles have nothing to do with intelligence level or education, but usually reflect the way that the individual has coped with other challenges in life prior to his or her cancer diagnosis. The minimizer does not want to be faced with different choices; he or she prefers to find a trusted expert and then rely on that physician’s advice. The anxious information seeker, on the other hand, wants to know all about his or her options, reads the research, and makes informed decisions.