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.
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.
“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.”
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.
“Minimizers don’t generally avail themselves of support groups,” claimed Mayer. “They usually don’t want to be exposed to other patients who may be sicker than they are.” But many other types of people do very well with advocacy and/or support groups and take great comfort from the process, feeling that they are not alone.
Some community oncologists have been reluctant to embrace advocacy groups, for several reasons. One is that they often regard groups run by peers (ie, other survivors) as not professionally managed and therefore not reliable. In addition, they may believe that their patients should not be exposed to those whose disease is more advanced than the patient’s and that participating in a peer-to-peer support group will bring up new fears.
“Doctors may worry about the quality of information in every online group, but they should keep in mind that there are almost always a certain number of very well-informed patients who keep up with the literature and correct false information on bulletin boards and mailing lists,” said Mayer.
"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.”
— Lee Schwartzberg, MD
“Often, Websites of advocacy and support groups are the places where patients can get the best up-to-date and most correct source material,” she continued. “Fears of unreliable information on cancer-related Websites are more relevant for commercially sponsored Web- sites, whereas online communities are generally more reliable.” She should know. She maintains an informational Website (www.advancedbc.com) for women with metastatic breast cancer that has up-to-the-minute news reports and links to important information for people living with metastatic breast cancer.
Physicians’ perceptions about advocacy and support groups could be changed by getting positive feedback from patients who have been helped by these groups. “In order to refer patients [to advocacy and support groups, physicians] have to be persuaded that patients benefit,” Mayer said.
Another barrier to physician referral to advocacy and support groups is that physicians usually refer patients within their own systems or hospitals for support or ancillary services. These types of services are offered by social workers or oncology nurses, rather than by peers (ie, survivors).
“Most community oncologists are not savvy about what advocacy and support groups have to offer, and they might tend to think about their own system or hospital,” said Mayer. “In many oncology practices, the nurse is the person the patient talks to and confides in, and it is important for oncology nurses to be aware [as well as doctors] about what peer-based advocacy and support groups have to offer.”
The following is a bird’s-eye view of several important advocacy organizations for major cancer types. For a full list of available advocacy and support groups for all types of cancers, go to www.aacr.org
SHARE is a New York City—based peer-support organization for women with breast or ovarian cancer that is celebrating its 35th anniversary. SHARE’s stated goal is to help people with cancer feel empowered to make informed decisions.
The organization offers a range of free services for women who are newly diagnosed with cancer or living with the disease. The group also provides services for partners and caregivers of patients with cancer. Separate hotlines—available in English, Spanish, and several other languages—are maintained for breast and ovarian cancer, said Alice Yaker, executive director of SHARE and a two-time cancer survivor herself. Hotline operators are available on evenings and weekends, providing patients with full support coverage.
“The unique piece to our hotlines is that they are based on the peer model, and all volunteers are cancer survivors themselves,” Yaker explained. “Hotline volunteers receive special training on how to use their personal experience to help others, and they have formalized follow-up training as well.”
Hotline callers with specific problems are matched with a peer volunteer who has had a similar problem and/or experience. The hotlines are personalized, so if a caller speaks with “Jane” the first time and wants to continue that conversation, the next time she calls she can also be directed to Jane.
“When I was diagnosed with breast cancer 20 years ago, I found the hotline a lifeline,” said Yaker. “I was able to talk to the volunteer in an honest, open way without having to protect that person’s feelings, as I would have had to do with my own family. Just speaking to someone who has met the same challenges you are facing brings hope.”
In addition to the hotlines, SHARE runs inperson support groups facilitated by trained survivors. “Being in a group can be a remarkable bonding experience,” she said. “I was not a ‘group person,’ but I found that being in a support group changed my life and gave me some lifelong friends.”
Although the Internet allows people to bond online, in-person support groups remain relevant because they provide a safe space for information gathering, help survivors prepare for discussions with health providers, offer resources, and provide a sense of community.
Some SHARE participants use only the hotlines or the support groups, while others take advantage of both programs. SHARE offers educational meetings that are run jointly by a medical expert in breast or ovarian cancer who is also a survivor. These meetings cover cutting-edge science as well as important issues regarding treatment, and they are videotaped and available on the SHARE Website.
“Having doctors come and talk to survivors is an important collaboration,” said Yaker. “These doctors refer patients to SHARE.”
One important program the organization runs is called SHARE Leaders. This group is composed of 65 women who have graduated from the National Breast Cancer Coalition’s Project LEAD program, which teaches them about science and research. SHARE Leaders meet monthly to discuss issues and controversies in breast cancer, and they sit in on internal review boards and grand rounds lectures and collaborate when possible with the medical and research community. SHARE Leaders also evaluate research and give presentations at medical meetings around the country. “Our reputation is that we are smart, knowledgeable, and we can educate the medical community about the patient’s perspective,” said Yaker. “It’s not just politically correct to listen to patients, but it has value in educating doctors as well.”
SHARE offers a range of other services, including a comprehensive program for people living with metastases, Spanish-language programs, doctor/patient communication programs, and an ovarian cancer program.
Musa Mayer maintains the www.AdvancedBC.org site, which pools available resources and information for people who are living with metastatic breast cancer and others who may want to be informed about this subject. Visitors to the site are offered links to recent and important articles on metastatic breast cancer, and these resources are updated often. In addition, Mayer is involved with an online community (www.BCMets.org) of more than 1500 people living with metastatic breast cancer and their families. The site answers questions about research and treatment. She also codeveloped another informational site (www.brainmetsbc.org) for people with brain metastases from breast cancer.
“I provide information on research and evidence-based treatment in understandable terms,” said Mayer. “People who participate in this virtual community offer one another emotional support and share everything to do with living with advanced breast cancer, including research, treatments, and side effects.”
The Lung Cancer Alliance is the only national nonprofit organization dedicated solely to the support and advocacy of people living with lung cancer as well as those at risk for the disease, said Kay Cofrancesco, the Lung Cancer Alliance’s Director of Advocacy Relations. “The organization’s mission is to empower patients, elevate awareness, and change health policy regarding lung cancer.”
“We want to reverse decades of stigma and neglect for lung cancer,” she said.
The Lung Cancer Alliance is a new incarnation of a previous organization called Alcase, and its headquarters are now in Washington, DC, to make it easier to facilitate political action.
“Our organization is a link between the oncologist and the patient,” said Cofrancesco. “After seeing an oncologist, patients can call our peer-topeer 800 telephone number and obtain credible objective information to help them in real time. We provide them with questions for the next discussion with doctors. We put them in touch with support groups and other resources, and we help them navigate their treatment decisions.”
The peers who operate the Lung Cancer Alliance’s Phone Buddy program put patients and caretakers in touch with other survivors of lung cancer, bringing some hope and optimism to patients.
A nationwide network of volunteers, which includes 6 chapters of the Lung Cancer Alliance, works on political advocacy and building awareness of the signs and symptoms of lung cancer. The Lung Cancer Alliance is funded by foundations, individual donations, and corporate support, but these funding bodies have no say in the content of programs and materials.
Since reorganizing in 2006, the Lung Cancer Alliance has expanded its Phone Buddy program and has partnered with EmergingMed to create and promote the first Lung Cancer Clinical Trial Matching Service. By calling 1-800-698-0931, patients with lung cancer can find the best clinical trial available to them.
"When you have two groups with knowledge and expertise [ie, oncologists and advocacy and support groups], it is to each group’s benefit to interact and exchange information and build a partnership—a coalition, if you will— that can improve the lives of survivors.”
— Elizabeth Edsall Kromm, PhD, MSc
“It is very difficult for a clinical oncologist in the community to keep up with the large number of available clinical trials,” said Cofrancesco. “The Clinical Trial Matching Service augments patients’ discussions with doctors and helps with clinical decision-making. Without much delay, patients and physicians can get a printout of relevant trials.”
One recent achievement of the Lung Cancer Alliance is the publication of the first-ever brochure on the role of stigma in lung cancer patients’ lives. “Survivors experience stigma from physicians [and] the general public, and sometimes even blame themselves for the disease,” she said. The brochure has received positive feedback.
Another first resulting from the political advocacy efforts of the Lung Cancer Alliance is the establishment of a new lung cancer program within the Department of Defense as part of the Congress-directed Medical Research Program. This initiative is funded through the Department of Defense because veterans have about a 25% increased incidence of lung cancer mortality compared with the general public due to battlefield exposure to toxins. The funds will be used for research and for early detection of lung cancer in veterans, noted Cofrancesco. Proposals are currently under review.
Another political milestone is the Lung Cancer Mortality Reduction Act, which calls for a comprehensive research plan addressing all aspects of lung cancer prevention, early detection, and early treatment. It also requests coordination among 3 government agencies: Department of Health and Human Services, Department of Defense, and Veterans Affairs. This is an important initiative because, according to recent estimates, lung cancer receives $1300 of federal funding research monies per death compared to the $28,000 per death that breast cancer receives.
Cofrancesco said, “The Lung Cancer Alliance believes that lung cancer deserves as much compassion and support as other cancers, and that support should be commensurate with its public health impact.”
Fight Colorectal Cancer’s mandate is to find a cure for colorectal cancer. This organization, formerly called C3: Colorectal Cancer Coalition, is primarily a combined informational and advocacy group. Patients can find out more information at www.fightcolorectalcancer.org, which includes up-to-date information about colorectal cancer. The organization maintains a toll-free hotline that answers questions from patients and caregivers. Fight Colorectal Cancer also has a strong advocacy component, both for research funding and for legislative action.
“We don’t provide peer-to-peer support nor do we have a buddies program, because another organization called the Colon Cancer Alliance provides that,” explained Kate Murphy, Director of Research Communication for Fight Colorectal Cancer. “We didn’t want to duplicate services.” Murphy has survived 3 bouts of colon cancer over the past 30 years, as well as cancer of the breast, ovary, and endometrium. Murphy said she has Lynch syndrome, an inherited condition that leaves her more susceptible to colon cancer and other cancers.
Murphy also does a lot of personal advocacy work, which includes maintaining the Association of Cancer Online Resources Colorectal Cancer Discussion List for patients with colorectal cancer
A unique benefit of the Fight Colorectal Cancer organization is its ability to provide survivors with the opportunity to become trained as advocates and become involved in the organization’s advocacy work. Murphy said, “This is important to many patients: to feel useful and [to feel] that they are doing something to help others with this disease.”
Advocacy and support groups exist for most cancer types, including the rare ones. Some groups are focused on particular patient populations that can be overlooked (eg, blacks, Asians, Jews, young adults), while others serve a particular geographic region. Oncologists, patients, and cancer survivors can benefit from what these groups have to offer, and the benefit between the oncology community and the advocacy community is a two-way street.
The key, it seems, is communication. “When you have two groups with knowledge and expertise [ie, oncologists and advocacy/support groups], it is to each group’s benefit to interact and exchange information and build a partnership— a coalition, if you will—that can improve the lives of survivors,” advised Kromm.