She’s a tiny woman. An inch shy of 5 feet; all of 70 pounds.
At 50, she fought late-stage breast cancer. At 55, she’s now being treated for spinal cancer.
That’s a heavy load for anyone.
But for this Korean emigré, her limited English and her undocumented status made it twice as hard to get the medical care she initially needed and stay on top of her treatment and aftercare. During her first bout with cancer, she mostly was left to advocate for herself. Now, she is being assisted by a health navigator at the Korean Community Services health clinic in Buena Park.
The woman, who asked to be identified only as Jennifer, is exactly whom the Susan G. Komen organization in Orange County hopes to help in a pilot program that seeks to understand why breast cancer is such a big killer of people of color.
Health data shows that Black, Asian American, and Latino women in Orange County who have breast cancer are diagnosed later, and more likely to die, than white women. This is true even though white women are more likely to be diagnosed with the disease.
The Komen program, set to launch next year, seeks to recruit a team of health care “navigators” at community clinics and other health providers to help guide minority women (and men, in rarer cases) toward the services and resources necessary for earlier diagnosis and better response. Data shows that an earlier diagnosis of breast cancer means the disease can be treated before it reaches a critical late stage.
There were lapses in Jennifer’s care before and after she was diagnosed with breast cancer, and again with her follow-up after-care treatment.
“It’s critical to have someone contacting (patients) and getting them to get further testing,” said Ambrocia Lopez, director of Komen’s Orange County Patient Navigation Initiative.
The idea behind the Patient Navigation Initiative is to match such patients with someone who will be more in tune with the cultural issues, language barriers and social disadvantages that Komen believes are reasons for the higher mortality rates for women from low-income, minority communities. In particular, Komen hopes to help people who face barriers in navigating a complicated health care system.
“These clinics find women who are in the highest need,” Lopez said. And those women, she added, typically have inadequate health insurance, or, worse, none at all.
“They’re scared.”
Mixed health data
Komen is launching the program based on health information produced in a couple of sources — a 2015 report called the Komen Orange County Community Profile, and more recent health data maintained by Orange County Healthier Together, a collaborative that aims to improve health outcomes for all communities in Orange County.
The Komen study found:
— Latinas represent nearly one-third of women 40 and older who have never had a mammogram screening.
— In Black communities, a rising trend of late-stage diagnosis since 2011 and a death rate exceeding that of the white population (30.2 per 100,000 versus 22.5 per 100,000).
— Asian and Pacific Islander communities — Chinese, Filipino, Japanese, Korean, South Asian and Vietnamese — had the highest invasive breast cancer incidents. And, among Asian Pacific Islanders, the rate was highest in the Japanese and Filipino populations.
— Women 65 and older are a high priority group, with the highest rates of breast cancer and death across all races.
Another key finding from OC Healthier Together showed a range of outcomes for different race and ethnic groups, with white women faring in the middle of the pack. When tracking the adjusted death rate per 100,000 women, the data ranked Pacific Islanders (44.2) as having the poorest outcomes, followed by African Americans (31.3), white females (20.8), Latinas (13.8) and Asians (11.7).
Komen plans to carry out its Patient Navigation Initiative over a three-year period in Orange County. After that, the organization might take the approach across the country if it can cut mortality rates, provide treatment at an earlier stage, and save money while bringing higher quality care to the targeted minority populations and patients.
“The pilot will provide an abundance of information and results to better inform the whole Komen network and how this can function as a national project,” said Robin Walker, executive director for Komen in Orange County.
Building blocks
The pilot is expected to cost $1.4 million, with money coming from a partnership with UniHealth Foundation, Pacific Premiere Bank, Hoag Memorial Hospital Presbyterian, Kaiser Foundation Hospitals, Irvine, and two undisclosed private family foundations.
Komen representatives said it should take about a year to build out a curriculum with local hospitals, clinics and community-based health centers, but the heart of the initiative will be a team of “culturally competent” patient navigators. Those navigators will come from sources who are trusted in the critical neighborhoods and communities. The navigators also will be trained in the nuances of breast cancer survival — screenings and early detection, accessing health insurance coverage, advocating for timely treatment, and guiding the patient through what can be a labyrinth of care.
Community health centers, such as the clinics Korean Community Services operates in Buena Park and Anaheim, are what Lopez called “the gateway for under-insured minority women.” Komen hopes to involve about a half-dozen such clinics and recruit 20 to 40 navigators.
“Our system for breast cancer care, and who pays for what, is complex,” said Ellen Ahn, executive director of Korean Community Services.
“If you are low income, under insured or uninsured, it’s overwhelming.”
Komen will support the work of the clinics and staff members — from receptionists to case managers to clinicians — to guide patients through that complex system and help them communicate with providers of health care and social services, and with agencies that can help in everything from transportation, recuperative care, food and housing.
“What is the extra hand-holding that they need?” Lopez said the initiative hopes to determine.
Two years ago, Komen worked with researchers at Cal State Fullerton to identify gaps in breast cancer treatment. That led to a partnership with the Los Angeles-based UniHealth Foundation, which serves Los Angeles and Orange counties.
“When it comes to ethnic minorities, the care and navigation is somewhat arbitrary,” Ahn said. “There is no system that trains a workforce to deliver consistent services across all populations affected by breast cancer.”
The way things are now, with too many women from minority communities not pursuing or getting the care they need, Lopez said, “They might get a diagnosis, and then we lose them in the process.”
Battle
Five years ago, Jennifer noticed something odd about the nipple on her left breast. It was inverted, a possible sign of breast cancer.
She got a free mammogram through a mobile screening clinic held at the YWCA in Garden Grove. Her low-paying job didn’t provide health insurance and her living situation — she lived with her elderly mother — meant she didn’t have a caretaker if she needed treatment.
Always healthy, Jennifer previously hadn’t sought health care services. Through emergency Medi-Cal coverage, she was able to get treatment at a local hospital, though there were delays because she basically had to advocate for herself. After chemotherapy, radiation, and surgery, she was prescribed medication — likely Tamoxifen, but she can’t remember — to reduce the risk of her cancer recurring. She took it off and on and suffered some side effects. One year into a recommended 10-year course of treatment, she was feeling better and stopped taking the medication.
In April 2019, a pain on the left side of her back grew so intense that Jennifer, now working two jobs, couldn’t walk. Cancer had spread to her spine and led to bone deterioration and a broken tailbone. Her insurance coverage from 2015, then approved for 18 months, had expired and getting re-insured became a bureaucratic nightmare.
Her mother reached out to someone at her church, Fullerton Presbyterian, the same church where Ellen Ahn of Korean Community Services worships. In May 2019, Jennifer got connected to the Buena Park clinic, where health navigator Karen Park works. Park became Jennifer’s advocate, worked to get her Medi-Cal coverage re-instated. But Jennifer lived on the Los Angeles-side of a street that borders north Orange County, and the two-hour drive into and out of Los Angeles, in her condition, left her exhausted.
“She couldn’t do it,” Park said. “It was so desperate. She needed help.”
Park worked with a Medi-Cal social worker to get Jennifer’s insurance coverage shifted to Orange County’s Cal Optima program, meaning she could be treated closer to home. Park continues to stay on top of Jennifer’s care, which includes treatment for diabetes and her overall health.
“I’m the one taking care of her follow-up appointments and making sure she’s OK,” Park said.
Jennifer is almost done with chemo, eating again and gaining weight. Park also arranged for free groceries through the clinic. “As long as she can eat and fight it, she’ll be OK.”
To those involved in the Komen navigation project, Jennifer’s journey illustrates the need for personal attention.
“It was teamwork that really saved this patient’s life,” Ahn said. “If we can replicate that across the county, we can undoubtedly save thousands.”
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