Published August 24th, 2023 at 6:00 AM10 minute read
Doctors at AdventHealth inserted a port into Armando Miranda’s chest, readying him for possibly lifesaving treatment. Miranda has Stage 3 colon cancer.
Advent’s doctors made the diagnosis, also telling the 55-year-old that the cancer had begun to spread.
Finally, he knew the cause of six months of severe diarrhea, chills and fever. Miranda’s exhaustion had become debilitating, making it nearly impossible for him to keep working as a mechanic.
But AdventHealth — where Miranda sought help in early August when he began expelling blood — also delivered other news.
Maybe you should return to Mexico to seek care, Miranda said he was told when it became apparent that he didn’t have health insurance.
The insinuation that some Latinos don’t belong here irritates staff at El Centro, a social service agency that is trying help Miranda navigate cancer care.
They’ve heard it so often that it became a motivation behind the ¡Ni Uno Más! Not One More! campaign, which is pressing area health care systems to find solutions for cancer care for people who can’t get insurance because of immigration status.
Miranda has lived in the United States for nearly 25 years. He and his wife have raised three children here.
“We have the same right to fight for our lives as anyone else,” said Ivonne Montanez, a health navigator with El Centro. “But it’s like they close the door.”
The Kansas City, Kansas, agency is urging officials at the area’s premiere cancer center — University of Kansas Cancer Center (UKCC) — to do more to help people like Miranda.
UKCC is the focus of El Centro’s ¡Ni Uno Más! Not One More! campaign.
As the region’s only National Cancer Institute-designated comprehensive care center, UKCC’s policies can influence how other local hospitals treat uninsured cancer patients, said Justin Gust, El Centro’s vice president of community engagement.
“You’re our regional cancer center, where people come for expertise, even other doctors and providers,” Gust said of UKCC. “Take that leadership role and let’s start talking about solutions to the problem.”
UKCC is well aware of the campaign.
“It’s a real quandary for this nation,” said Colette Lasack, vice president of revenue cycle operations for the University of Kansas Health System. “How do we try to provide care for everyone that we can and do it in an affordable way?”
Determining care for uninsured people is affected by many issues: the lack of a safety net hospital on the Kansas side of the metropolitan area; the unwillingness of the state legislature to expand Medicaid; the politicization of immigration reform; and the policies of drug manufacturers, which almost never offer discounts for undocumented patients.
And health organizations run on “very low, single-digit margins,” Lasack said.
At the University of Kansas Health System, financial assistance or free care (sometimes termed charity care) is only available to U.S. citizens or permanent legal residents, Lasack said, citing policy.
“The need is so great that we could never give it all away, or we wouldn’t be here,” she said.
That leaves “self-pay.”
Self-pay costs are determined after applying an 80% discount for hospital charges and 65% off physician charges, Lasack said.
Miranda is awaiting his dollar figure, hopeful that he can raise it and begin care at UKCC.
He said that he has “faith,” in general and in the hospital systems where he has sought care.
Meanwhile, El Centro’s Montanez receives about two calls a week from people needing help finding treatment after they’ve been diagnosed with cancer.
Most have been told they have cancers of the breast, colon or liver.
She helped one woman receive treatment for breast cancer by determining that the woman was a legal permanent resident, just not a U.S. citizen. The woman had a 10-year-old son. She wanted to survive the cancer for him, Montanez said.
“When the language is a barrier and you don’t have anybody else, you need at least one person to make a difference,” Montanez said of her work, which relies on her fluency in Spanish and English, in addition to her knowledge of and relationships with area health care providers.
“I tell them that it’s going to be hard,” she said of her clients. “But it’s not going to be impossible.”
The ¡Ni Uno Más! Not One More! campaign is a painstakingly crafted effort.
There’s a petition, a video and a website that details meetings held with hospital officials, and answers for common questions about how the project evolved.
El Centro is urging local health care organizations to work together to find ways to help fund cancer treatment for patients who don’t qualify for insurance.
The 47-year-old agency noticed an increase in Latino cancer patients being turned away from receiving care from local hospitals around 2016.
People were sometimes told that they had to pay as much as $200,000 up front to begin treatments, Gust said.
The dollar figures have started coming down, to around $35,000 or $50,000 depending on the treatment needed and health system.
It might be an outcome of federal legislation that forced health systems to be more transparent about costs.
“But they’re kind of holding treatment hostage in a way, until they get a certain amount of money,” Gust said. “What we’re really advocating for is to make that process more equitable.”
Undocumented Latino families found that if they can raise about half of the cost estimate, treatment could sometimes begin, Gust said.
Some have been able to able to afford chemotherapy by borrowing money from family and friends, holding raffles and digging into savings.
“Our biggest concern is the amount of time patients are spending between diagnosis and treatment,” Gust said.
The ¡Ni Uno Más! Not One More! campaign points out that cancer affects all racial and ethnic groups. But the website also notes that for “anyone diagnosed with cancer who is uninsured on the day they are diagnosed, there is a 50 % decreased likelihood that they will be alive 5 years from that day.”
El Centro has some funds to help cover treatment costs. And the Mexican consulate in Kansas City often contributes to cancer patients from Mexico.
Help was found for some cancer patients at a clinic in Emporia. But that wasn’t sustainable, either for the clinic to serve everyone or for people to drive that far for help.
The University of Kansas Cancer Center boasts of “expertise unmatched in the region.” Its website points out “patients treated at an NCI-designated cancer center have a 25% greater chance of survival than patients treated at other cancer centers.”
UKCC is the “only National Cancer Institute-designated comprehensive cancer center in the region, and 1 of only 53 in the nation, to receive this elite distinction. Comprehensive designation is the highest level of recognition awarded by the NCI. It is the gold standard of excellence, awarded only to cancer centers with the deepest and broadest knowledge of cancer.”
That impact is also why El Centro’s campaign has focused on the center, but also included outreach to other local health care providers.
Flatland reached out to AdventHealth (formerly Shawnee Mission Medical Center) and University Health (former Truman Medical Center, the area’s safety net system) for comment. Representatives from both institutions responded, expressing interest in the topic. But both ultimately did not comment.
The University Health website notes its mission to “provide the highest levels of care to everyone. That includes those with private insurance or no insurance at all.”
But University Health can only serve those in Jackson County, and many of El Centro’s clients live in Wyandotte and Johnson Counties.
Gust said that University Health began to accept more undocumented cancer patients after Missouri expanded Medicaid in 2021, after voters approved a ballot measure. It’s possible that expansion freed up dollars for uncompensated care.
Kansas has yet to expand Medicaid, although Gov. Laura Kelly has consistently pushed for the legislature to do so.
An email sent to St. Luke’s Hospital of Kansas City went unanswered. The hospital has an affiliation with the Alvin J. Siteman Cancer Center in St. Louis that can give patients here access to clinical trials.
Resistance by health care systems to even address the issue is part of the frustration driving El Centro’s campaign.
“These are folks that consider themselves Wyandotte County residents, regardless of status,” said Irene Caudillo, who was president and CEO of El Centro when the campaign began.
COVID has raised awareness of health inequities, said Caudillo, now chief of staff for Mayor Tyrone A. Garner.
“We really need to find some solutions so that we can stop people from dying,” she said. “Because it is about human life.”
In 2020, Illinois received accolades for being the first state to expand health care coverage to seniors, regardless of their immigration status.
The tone is decidedly less jubilant now.
Illinois legislated workarounds by creating programs that resemble Medicaid, rolling out enrollments for younger and younger people, the last being those 42 and older.
The innovative program is credited with making cancer treatment and other specialized care accessible for many immigrants.
In June, protests erupted when Illinois Gov. J.B. Pritzker, a Democrat, ordered a pause on new enrollments of those aged 41-64.
He also capped the number of people 65 and over allowed into the program at 16,500.
Pritzker had previously lauded Health Benefits For Immigrant Adults, credited with allowing 65,000 people to access health care.
Now, the governor argues it’s too costly.
Advocates question the administration’s calculations.
For one thing, there are cost savings when people no longer wait until an emergency to seek care. Managed health conditions are aligned with increased productivity.
“People have been waiting years to turn 42 to qualify,” said Tovia Siegel, campaign director of Healthy Illinois. “And now, they’re no longer eligible.”
Children 18 or younger had long been offered health care in the state, regardless of immigration status.
Like El Centro, advocates in Illinois are begging the governor’s office to work with them to find a solution.
Illinois spent years forming coalitions before the legislature acted, Siegel said.
Messaging focused on moral and fiscal responsibility. Health care providers deserved to be compensated for the care they provide. And human beings, regardless of status, have a right to receive what can be lifesaving healthcare.
“When we have large uninsured populations, it actually hurts everybody insured and uninsured because the health care system is burdened by providing care that they’re not compensated for,” said Siegel. “And that drives up costs for everybody and so this is something that makes sense.”
Under and uninsured people are a longstanding, national concern.
The 10.5 million undocumented people in the nation are one subset.
But decades of congressional stalemate severed hopes for comprehensive reform of immigration law and procedures, which is a federal issue.
Changes in the law, viewed by both Democrats and Republicans as unlikely anytime soon, would make it feasible for more people to become legal permanent residents, resulting in eligibility for many insurance programs.
Instead, states have begun to find ways to address the federal government’s failure, advocates noted, citing programs in Oregon, Washington, California and Colorado.
Many of the cancer patients who turn to El Centro for help have lived in the area for decades. But they lack a pathway to gain legal status. Contrary to popular belief, it’s not as simple as paying a fee, or waiting patiently for a few years for paperwork to process.
Emergency room care, and some life-saving surgeries, are guaranteed by law, regardless of someone’s ability to pay, or their legal status.
Area clinics often offer health care regardless of ability to pay, or by accepting nominal payment.
But a cancer diagnosis calls for more specialized care. And it’s often costly.
El Centro found support for the ¡Ni Uno Más! Not One More! campaign within the Kansas City Health Equity Learning and Action Network, of which it is a member.
The network is a coalition that is taking on issues of inequity in health care. The Health Forward Foundation, led by Qiana Thomason as president and CEO, is part of the effort.
Thomason, when asked to comment on the El Centro campaign, sent the following statement:
“At Health Forward, we work to ensure that everyone has a fair and just opportunity to be healthy. This requires actively removing obstacles that drive health disparities — barriers that are rooted in structural racism and economic inequity. Through the work of the Kansas City Health Equity Learning and Action Network our partners are centering equity in all aspects of the health ecosystem and leading practice and policy change at organizational and community levels that make the system more equitable and just.”
Thomason’s choice of words mirrors a growing national movement working for equity in health care. Some insist that solutions will come only when current systems are dramatically changed, or dismantled.
Isidro Rodriguez’s colon cancer was diagnosed at a local clinic through a colonoscopy.
At first, he was told treatment might cost him $400,000.
The 62-year-old Overland Park barber has lived in the U.S. for 23 years. But he did consider returning to Oaxaca, Mexico.
Financial counselors at UKCC (there are 55 of them, plus an outside vendor to work with patients) determined that he would need to pay nearly $54,000 for his colon cancer treatment.
He was able to raise $26,800, through El Centro, the Mexican consul, friends and family.
“I feel so blessed,” Rodriguez said.
Strangers even brought items to raffle.
In April and May, he received chemotherapy and radiation treatment. And a July screening detected no cancer.
“Horrible,” he says, showing photos of his time in treatment, which resulted in burns that caused his skin to peel off and ghastly blobs of discharge.
He jokes that his new skin growth is baby soft. And he praised the UKCC doctors and staff for their kindness.
In late October, he will undergo more tests.
And he’s slowly trying to rebuild his business as a barber. But doctors have warned him to be careful, as his immunity is still compromised.
He’ll need to repay about $16,000 of what was raised to begin treatment. The money was offered to him by others as a loan.
More than 200 people have signed El Centro’s online petition. And another 1,000 signed during canvassing.
El Centro is also hearing from a growing number of physicians and other health care officials who voice support for ¡Ni Uno Más! Not One More!
“We’ve launched the campaign and are continuing at it and calling them out to also call them in to say, ‘let’s do this.’” Gust said of UKCC. “Let’s start planning and talking about what we can actually do to make things better.”
Mary Sanchez is senior reporter for Kansas City PBS/Flatland.