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Ethnic disparities in cancer survivorship

Member Story

Ethnic disparities in cancer survivorship

Picture of Wendy Wolfson

I was interested in finding out what happens to the majority of cancer patients who don't get treated at the select academic medical centers with survivorship and patient navigation programs. Getting through cancer and its aftermath becomes more complicated if you don't have insurance, or are an ethnic minority or don't have the language skills or ability to aggressively pursue treatment and regular follow up. The concept of guiding a patient from diagnosis through treatment and followup is slow to dawn in our fragmented medical system but can improve health outcomes and reduce the misery and stress experienced by patients and their families.

I started with a literature search. I wanted to know who were the key researchers and the aggregate picture in terms of data. People will send you their papers if you can't access them off pubmed. 

I found a wealth of community resources by attending a meeting of the Intercultural Cancer Council. It was a gold mine of contacts. These were people who knew their communities, what their constituents needed, and could be my guide. They wanted to talk about their communities and had a wealth of stories. They would be good starting points for future articles.

There are plenty of resources for cancer patients but they are scattered and most people find them by word of mouth. I made a map of every group I could find in California that could help someone with cancer. I knew that many cancer patients, particularly older ones, don't even have access to a computer, so can't access information on OncoLink, for example, or my map. But hopefully they would have somebody to turn to who could interpret for them or direct them. The nurses I talked to who ran the various programs were totally jazzed by the idea of a CareMap of California.

 I got the best response when nurses and researchers forwarded me their contacts.  I do not speak Spanish, so the nurse who ran the Olive View program connected me to Linda Lonsinger, the patient in my article, who is bilingual. I talked to Lonsinger multiple times, as I wanted to give enough detail but protect her privacy.  She is really appreciative of the care she received, even though she didn't have insurance, and that she is seen as a person and her welfare and dignity are respected. 


Leveling the playing field in cancer care
Thursday, July 22, 2010

Nine years ago, when she was 48 and her three daughters were grown, Linda Lonsinger found a lump in her breast. She had cancer, but no health insurance.

She stumbled upon a pioneering program at the OliveView-UCLA Medical Center that helps poorer patients. The hospital's Avon Clinic helps patients navigate the maze of potential treatments, then provides expert care and support along the long, long road to recovery.

"That program meant my life," said Lonsinger, who lives alone. "When I was diagnosed, I was scared. Just knowing that they were there for me, I knew there was hope. I felt completely confident with them. I knew that I was in the best of hands."

(View California cancer survivorship programs in a larger map.)

She was very lucky. Her care included regular mammograms, medical checkups, even advice on how to eat well.

Those who survive cancer run a life-changing gauntlet that often includes pain, depression, heart problems, bone loss, recurring cancers and myriad other complications.

Many of the aftereffects can be avoided through long-term care, but those programs are often inaccessible to the poor, particularly ethnic minorities like Lonsinger.

Even programs designed for low-income patients tend to be located at big-city teaching hospitals, so most rural cancer patients turn to under-resourced community hospitals that don't offer much follow-up care beyond referrals to local support groups.

Minority patients develop cancer at the same or lesser frequency than whites, but more of them die, according to Kimlin Tam Ashing-Giwa, who directs the Center Community Alliance for Research and Education at the City of Hope National Medical Center. And women of color often get breast cancer at a younger age than most white women.

"It is a particular burden for those who come into the illness already socio-economically challenged," said Ashing-Giwa.

Quality Issue
Timely and accurate follow-up could help reduce ethnic disparities, said Dr. Marjorie Kagawa-Singer, professor at the UCLA School of Public Health. Equal access to treatment does not always mean equal quality of treatment, she said.

"For the majority, the latest knowledge and information for the long-term medical follow-up of cancer survivors is not widely known in the medical community," said Kagawa-Singer. "The problems with the quality and availability of follow-up care gets compounded for ethnic minorities. Physicians may not be available, or may not have adequate knowledge or time."

"Support services and groups tend to be individual-oriented, European-Western-centric," she added. "That is why you see relatively few minorities in mainstream support groups."

The concept of patient navigation and survivorship care has bounced around policy circles for years now, but is still largely unfunded. In 2005, the National Cancer Institute began piloting selected Community Networks Programs to build ties with community organizations that serve minorities and low-income people. It's a start. But Ashing-Giwa suggested that widespread survivorship care won't get funded anytime soon.

Olive View’s breast cancer patients are in their 40s and 50s, and about 60 percent Hispanic; the next- largest ethnic group is Armenian. The clinic has served 500 patients since 2006 at a cost of between $50,000 and $300,000 a year for the patient navigation program and an additional $150,000 to $200,000 for the survivorship program.

A third of breast cancer survivors seen in the clinic don’t even have a primary care provider and many patients, unable to get an appointment after discharge, end up delaying care for urgent problems or running out of medications for chronic conditions.

"I’ve had people crying in my office, they had such bad memories of their diagnosis and treatment," said Laura Zibecchi, the bilingual nurse practitioner who runs Olive View’s half-day weekly survivorship clinic. "They didn’t have the Internet, the support groups. Our clinic gives them an opportunity to tell their story and move forward with their lives.”

'Sleeping Beauty'
Lonsinger is a fairly typical patient. Born in Manhattan, she was raised in Mexico where her parents dubbed TV shows into Spanish. Her Cuban mother was the Spanish voice of Sleeping Beauty. But her parents passed away. As a teenager, Lonsinger returned to the US. She had to drop out of college after two years and work. An early marriage ended.

Later as a single mother, Lonsinger found the lump in her breast but her doctor dismissed it. She only got it diagnosed as cancer the following year. After two surgeries and chemo, she found the Avon Clinic at Olive View.

“It has meant a lot me to know that I wasn’t left alone after surviving cancer,” said Lonsinger. “They backed me up in any necessary checkups or treatments to make sure my bones are doing well.”

Lonsinger, who has developed ostopenia - low bone density - also get bone tests. The Avon Clinic also monitors her state of mind.

“I got well-educated on how to take care of myself through the Avon Clinic,” she said. “Cancer can affect your moods and emotions because of the medications you take. I haven’t needed counseling but I find it so wonderful they offer that too. At the Avon Clinic they make sure that you get any medical follow-up you need, so that you stay strong and healthy.”

An Ethnic Patchwork
California is replete with ethnic and community organizations that serve minority- and low-income people, but they have patchwork outreach. People mostly have to fend for themselves.

Some, like Angela Agbasi, get lucky. Now a cancer advocate for Women of Color, Agbasi was introduced to its cancer support group through church when she developed breast cancer while pregnant with her fourth child nine years ago.

“If you get sick, you lose your job and your insurance,” said Agbasi “When you don’t have insurance, most of the time you don’t get the best of care. You have to be your own self advocate."

In her program, members accompany newcomers to treatment and guide them to "hidden treasures" as Agbasi describes them. Those might be a church that offers taxi vouchers to get to treatment, food banks, or free memberships at the YMCA. "To me, personally, getting a support group is key to your survival," Agbasi said.

According to Ashing-Giwa, hospital-based groups for African Americans tend not to last long. but grassroots peer support groups like Women of Color persist for decades. Latina breast cancer patients use both hospital- and community- based groups such as Wellness Community.

The diverse Asian community uses both hospital and peer-based like the Herald Cancer Care Network or the Chinatown Health Center. At a recent Intercultural Cancer Council meeting in San Francisco, ethnic community organizations discussed how to join forces to train more patient navigators. "In our community," one member said wryly, "a patient navigator is a daughter or son who speaks English."

Zibecchi says many new patients at the Avon Clinic don't even know what type of breast cancer or treatment they had. “They don’t have access to this information or to providers who will explain this to them," she said. As for pain or other problems, "patients may not tell their providers about their concerns post-treatment unless the provider specifically asks."

“One patient was putting socks in her bra because nobody asked her (about breast reconstruction or prostheses) and she didn’t request assistance," Zibecchi said. She provides patients survivorship care plans along with mammograms. A social worker helps patients access social services and financial assistance.

"Right now, Nurse Laura goes into the Internet to get the best information she can give me so I can get the best follow-up." said Lonsinger. "They are concerned about me knowing that I have backup."

Wendy Wolfson's article is the second in a series of three conceived and produced for as a project for The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communication & Journalism.