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'The cancer lottery' meant this Kansas woman qualified for Medicaid, but not her mother

A woman sits with a picture of her mother.
Samantha Horton
Kansas News Service
Stephanie Barr was diagnosed with breast cancer and was able to qualify for Medicaid. Her mother died in 2020 from lung cancer, which did not qualify her for Medicaid.

An early detection program provides breast and cervical cancer screening and treatment to uninsured people. Yet potentially hundreds of other Kansans diagnosed with other types of cancer remain without coverage.

OVERLAND PARK, Kansas — Both Stephanie Barr and her mother got cancer.

But different kinds. Because Barr had breast cancer, she qualified for Medicaid coverage — meaning both care and protection from medical bills that could bankrupt her.

“I kind of won the cancer lottery in a way, because I had the right kind of cancer that could qualify me to get this health insurance coverage that I desperately needed to get through this,” Barr said.

Her mother had lung cancer.

"She didn’t have the right kind of cancer," Barr said, "and she couldn’t get on Medicaid."

In fact, thousands of uninsured Kansans face the seemingly confusing policies that define not just whether insurance will spare them financial ruin if they get sick because of the particular illness they contract.

In Kansas, about 17,000 people are expected to be diagnosed with cancer this year, according to the American Cancer Society. Prostate cancer is the most diagnosed, followed by breast and lung cancer.

“No one deserves cancer, and everyone deserves quality, timely cancer care,” said Megan Word, the Kansas government relations director for the American Cancer Society Cancer Action Network. “For many, many Kansans, KanCare is that cancer care.”

The National Breast and Cervical Cancer Early Detection Program was established in 1990 to increase access to screening for those two forms of cancer. The American Cancer Society pushed for preventative care for breast and cervical cancer after high cancer rates were found among low-income populations without health insurance. The program offers early detection screenings to uninsured adults.

In 2000,federal law extended the screening program to also provide Medicaid coverage for the two types of cancer. In Kansas, if breast or cervical cancer are detected through the federal program, then the patient can qualify for Medicaid.

“It is the only state program that we have” to qualify patients for special Mecidaid cancer coverage cancer, Word said.

In fact, Gov. Laura Kelly approved continuing funding for the program in 2022.

While Medicaid expansion advocates applaud the investment in the Early Detection Works program, potentially hundreds of other Kansans diagnosed with other types of cancer remain without coverage.

That includes Patty Herrs, Stephanie Barr’s mom, a waitress and mother of five who died from lung cancer. And Jo Anne Dickson, who was finishing her Ph.D. when she died from non-Hodgkin’s lymphoma mantle type B — a more aggressive type of cancer.

Chandra Dickson remembers that day in December 2015 when she took her mother, Jo Anne Dickson, to an emergency room. She knew something was severely wrong. But her mom did not have health insurance. So the family waited months as Jo Anne Dickson lost weight and saw her breathing problems worsen.

(left to right) Jo Anne Dickson with her daughter Chandra Dickson. Jo Anne died of cancer in 2016 after being unable to afford treatments while uninsured.
Photo courtesy of Chandra Dickson
Jo Anne Dickson, left, with her daughter Chandra Dickson. Jo Anne died of cancer in 2016 after being unable to afford treatments while uninsured.

Finally, another emergency room visit led to her cancer diagnosis.

“Because of her inability to access affordable insurance or qualify for Medicaid, she would often put her health care needs last,” Dickson said at a Statehouse rally in March calling for the expansion of Medicaid in Kansas.

Even having a later-stage diagnosis, the doctor gave her an 85-95% chance of survival.

But her mom didn’t have breast or cervical cancer. Her cancer wasn’t a part of the early detection program that would have qualified for Medicaid. So she tried claiming a disability. Officials denied her first application.

Without health insurance, the cost of treatments could run $500 a week. Dickson’s mother went a month before a friend loaned the money for treatment. She went to the appointment. But at that point, the cancer had progressed too far.

“My mother died eight days later,” Dickson said, “after her first chemo treatment from a cancer that is generally considered curable.”

A few days later, her mother’s disability approval letter arrived in the mail.

“This whole system failed my mother,” Dickson said, “because had she had Medicaid from the beginning, she would have had treatment right away.”

A2018 study published by JAMA Oncologyfound that in states that did not expand Medicaid, 5% more uninsured adults were receiving a cancer diagnosis than people in states that expanded the federal program.

Cathy Bradley, deputy director of the University of Colorado Cancer Center, said cancer diagnoses for the uninsured typically come in a later stage and are most often discovered on a trip to an emergency room. At that point, the patient has symptomatic conditions including severe weight loss, a persistent cough, or fatigue.

The cancer is still treatable. But late-stage treatment is more expensive and less successful.

Bradley’s research found that people who have continuous Medicaid coverage have better cancer treatment outcomes than those without insurance or those who receive insurance following a cancer diagnosis.

“You have pretty good outcomes,” she said. “Not the same as private insurance, but a whole lot closer than what happens if you don't have insurance at all or if you get Medicaid insurance after diagnosis.”

A person has to make less than 250% of the federal poverty level to qualify for Medicaid through the Early Detection Works program. As of June 2022, that would be $33,975 annually for an individual.

In states that expanded Medicaid, the threshold is 138% of the federal poverty level. For non-expansion states, like Kansas, income eligibility must be less than the federal poverty level — $12,880 for an individual.

The Republican leadership of the Kansas Legislature has repeatedly blocked Medicaid expansion because of the added cost to taxpayers.

Chandra Dickson’s mom, Jo Anne, ended up with medical bills of $850,000. Dickson said the State of Kansas eventually paid for all of it after the hospital signed her up for Medicaid posthumously.

Bradley said medical bills for uninsured individuals that pass away can still end up being paid out by the state.

“The state has to go in and pick up that,” she said. “Only they pick it up in a different way.”

Bradley said Medicaid costs can be expected to go up initially as more people are able to access and use the insurance. Yet that access can lead to early detection of cancer and other chronic health issues that can reduce overall medical costs.

“You have to take the long view,” Bradley said.

Breast cancer survivor Stephanie Barr said her Medicaid approval letter gave her hope.

“I wanted to frame it,” she said.

Barr got treatment through Medicaid for 10 years.

Without worries about medical debt, she went back to school and got her high school diploma and started taking community college classes. Barr is now a restaurant manager and has insurance through the marketplace.

“Having access to health care before you get diagnosed with a chronic illness can change people’s lives,” Barr said. “We have to do better for each other.”

Samantha Horton reports on health for the Kansas News Service. You can follow her on Twitter @SamHorton5.

The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy. 

Kansas News Service stories and photos may be republished by news media at no cost with proper attribution and a link to ksnewsservice.org.

Samantha Horton is a former health reporter for the Kansas News Service. She most recently worked as a fellow with the NPR Midwest Newsroom and the Missouri Independent.
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