“I hope I see in my lifetime a growing realization that we are one world. And that no one is going to have quality of life unless we support everyone’s quality of life.

– Dr. Helen Rodríguez-TrÍas

According to the Center for Immigration Studies, immigrant individuals – lawfully present and undocumented – made up 46.2 million people in the U.S. as of November 2021. Despite these numbers, the U.S. continues to have a torrid relationship with non- U.S.-born citizens, and especially those who require acute health care services. As this country struggles with a history of health and racial inequities among its own citizenry of Latino/a, Black, and Indigenous individuals, the needs of its immigrant population are ignored, dismissed, and flagrantly devalued. As for those in dire need of lifesaving health care, the bureaucracy and red tape can constitute a literal death sentence.

For context, noncitizens include lawfully present and undocumented immigrants. Lawfully present immigrants have temporary or permanent status like visas or green cards. This includes refugees and asylees who are usually able to apply for Medicaid and other temporary benefits in certain states. If for any reason they don’t qualify, they are eligible for a temporary program called Refugee Medical Assistance (RMA) for an eight-month period.

However, fear, confusion, and a reticence to seek support were exacerbated during the Trump administration. The public charge rule was drastically expanded to reduce the number of people who were eligible for green cards and visas by redefining what made them dependent on government safety net programs. This made it scarier and more confusing for immigrant individuals to seek care and support. Although the Joe Biden and Kamala Harris administration reversed the rule, research suggests that the damage is already done. More immigrants forfeited medical assistance or delayed care, worsening outcomes for those with chronic disease.

Individuals who receive deferred action are authorized to be in the U.S. for a period of time, as deportation is temporarily deferred. The Deferred Action of Childhood Arrivals (DACA) program was created to protect young adults, who were brought to the U.S. as children, from deportation, and provide them with work authorization for temporary renewal periods. 

According to Kaiser Family Foundation,  as of December 31, 2022, there were approximately 580,000 active DACA recipients from about 200 different countries of birth residing throughout the U.S. Although these individuals have work authorization, they have been ineligible for many federal programs including Medicaid, Children’s Health Insurance Program (CHIP), and the Affordable Care Act (ACA) health insurance Marketplace. However, the Biden administration is poised to reverse this policy by issuing a new rule to extend benefits to DACA recipients.  According to a White House fact sheet, the proposed rule change is slated for late April.

Undocumented immigrants are foreign-born individuals residing in the U.S. without authorization or are individuals who entered the country lawfully but remained after their visa status expired. They are not eligible to enroll in Medicaid, ACA, or the Supplemental Nutrition Assistance Program (SNAP).

The Medicaid, CHIP, and ACA tightrope

Even for lawfully-present immigrants, eligibility for Medicaid and CHIP comes with restrictions. For instance, eligibility hinges on “qualified” immigration status. In addition, there is a five-year waiting period, from date of entry,  after obtaining qualified status before they are eligible to receive benefits.

Contrary to the negative discourse about immigrants’ pull on an already strained U.S. safety net system, approximately 50% to 70% of the undocumented immigrant population pays federal and state taxes. Despite these contributions, undocumented individuals continue to face discrimination, racism, and dehumanizing barriers to quality health care – services their tax dollars help pay for. These inequities are particularly palpable for individuals, and their families, diagnosed with cancer.

For undocumented individuals needing urgent care in Missouri, Emergency Medical Treatment and Active Labor Act (EMTALA), allows for emergency Mo HealthNet coverage during the dates on which emergency care was received. Similarly, in Kansas, EMTALA is offered through federal Medicaid funds, and it only provides health care services for life-threatening emergencies or labor and delivery services for pregnant women.

As for cancer patients, they may receive emergency medical attention, however, it typically does not cover cancer treatment costs. 

For those with cancer, a delayed diagnosis affects prognosis and treatment options. For undocumented populations, less effective treatment options are more likely offered as quality effective treatment options are cost prohibitive.

This dilemma stretches far and wide. Carlos Rivera had been losing weight and living with intense abdominal pain. But he pushed through and kept working installing office furniture in Texas. One day, he couldn’t get out of bed while in Mexico, visiting his wife. He went to a clinic there and got tested. A month later, back in Texas, he visited a doctor and pulled out the scans he received at the clinic. Rivera was diagnosed with colon cancer which had spread to his liver.

Texas, like Kansas, has not expanded Medicaid. Rivera told the clinicians he wanted to fight the cancer but couldn’t qualify for Medicaid and couldn’t afford to pay for the treatment himself. In Spanish, he said, “So what does this mean? Someone who doesn’t have insurance doesn’t get saved?”

The plank walk

El Centro, Inc. knows these stories all too well. For them, the cancer quagmire for Latino/a clients began more than a decade ago with a routine client screening. “At the time, we were partnering with a small nonprofit that doesn’t exist anymore called the Coalition of Hispanic Women Against Cancer,” said El Centro Chief Program Officer Erica Andrade. “They did mobile Pap smears and mobile mammograms for Latina, Spanish-speaking women. We were hosting one of those events and a client of ours signed up, and got screened. She needed additional diagnostics and a referral to an oncologist. She also needed additional results and consultation about what the results meant.”

When it comes to the immigrant population, Andrade applauds the work of federally qualified health centers (FQHCs), and how they are adept at preventive care, providing medical homes, and treating chronic conditions like diabetes and hypertension, among other diseases. But when a patient needs specialty care, FQHCs often refer patients to a health system for care.

“She went to get the extra diagnostics, but the radiologists and lab techs cannot provide a diagnosis based on the lab results,” Andrade said. “You need a doctor for that. That’s when I realized how hard it was to get access to someone for that piece. I tried multiple ways. I sent emails, I tried to do official referrals to get her in. Nobody wanted to take her. I was told, ‘We can’t see her and we can’t read the results because then that makes us liable. We can’t [not] treat somebody once we’ve diagnosed them.’ That’s when I started understanding the red tape…Once they make a diagnosis, then they do have to treat it because ethically, they are bound to that. But if they don’t diagnose, they don’t have to treat.”

Andrade said her client was devastated. At the time, she was a young mom, with young children, dreading a fatal diagnosis. Finally, Andrade found somebody who knew somebody who told her to send the client’s medical file. Andrade and her client met with this doctor after hours. Serving as an interpreter, Andrade was able to tell her client that she did not have cancer. All the results were negative – she was fine. “So, a positive ending, but I was like, ‘really? This long for a benign, negative diagnosis?’ That’s when we officially begin doing this health navigation work around cancer access. We realized there was no reason for all of this to have happened just for somebody to get the word, ‘it’s negative.’”

Had she been positive, treatment would have been delayed for at least four months, Andrade said. On top of that, having an actual diagnosis still would not have gotten her treatment. “That’s when we knew this was a systems failure.”

From there, El Centro invited health department representatives, FQHCs, state programs, and others in Wyandotte County to share stories about clients who experienced similar challenges.

A hard no

Cancer center TV commercials are well written and produced and in some instances tested by focus groups. They emote well and tug at the heartstrings. They make it clear that’s the place to seek treatment, God forbid, if cancer strikes. Cancer centers usually have a deep, vested community footprint. They provide an abundance of charity care in the communities they serve through donated services and other altruistic endeavors.

El Centro, aware of the formidable role cancer centers play in the community, decided to reach out to the top cancer care provider for Wyandotte County residents. “We decided we needed to do something about it,” Andrade said. “Let’s have a conversation and see if we can help them understand how their policies create systems that are not equitable.”

So they reached out.

“We totally got their concerns. We were not arguing the fact that they give a lot when it comes to charity care and donated services. We also understand the issue with uncompensated care. But we are talking about individuals who live and work in Wyandotte County, who have established their lives here. This isn’t about medical tourism, these individuals are not coming in from somewhere else,” Andrade said.

Needless to say, there was no consensus, or middle ground gained. Although clients were not officially turned away, the cost of cancer treatment made seeking care moot for most.

Stretching the boundaries

Eventually, El Centro was able to provide care coordination for about 16 cancer patients with help from the Central Care Cancer Center in Emporia, Kansas. “But after a while, they had to be honest and be like, ‘We can no longer support this.’ They are a for-profit cancer treatment facility. They told us that if they had insured cancer patients that could somewhat compensate for the costs of the uninsured patients that would help. It just wasn’t a sustainable solution,” Andrade said.

With expanded Medicaid, additional relief has come through University Health (formerly Truman Medical Center). They have been seeing undocumented patients from Kansas. The problem is University Health’s service area is Jackson County residents. “But now, we are forced to send our clients from Wyandotte across the state line to get treatment because at least they won’t turn them away.”

Andrade said, like Central Care Cancer Center, University Health is racking up unpaid medical debt and predicts this too will have a short shelf life.

As for cancer centers more proximate to El Centro’s clients, once in a while they are able to treat that patient. “We just had a lady get seen there,” she said. “I believe she was able to raise funds through GoFundMe and by cooking and selling meals. Her treatment was delayed until she raised about $8,000. So, it’s not impossible. It just has to be a better way to make it faster, more efficient, more effective, and just better to care for people. And that’s what we’re trying to do.”

¡Ni Uno Más!

El Centro is pushing back with a campaign called, ¡Ni Uno Más – Equitable Cancer Care Access Now! ¡Ni Uno Más! translates as not one more. “¡Ni Uno Más! means we don’t want to see one more individual have to struggle or delay cancer care when they’re given this diagnosis that we understand already is going to be life-changing and life-altering,” Andrade said. “It’s our way of saying “Not one more will have to struggle through the challenges that we’ve seen in our community. This is our vision and hope for the future – that we don’t see that anymore.” 

The campaign kicks off with a video that tells the story of El Centro’s arduous health care navigation journey with clients diagnosed with cancer that spans more than a decade. It’s a humanitarian piece that underscores the toll that inequitable health care policies play on immigrants – who happen to have cancer.

“I think the stress is the biggest trauma,” Andrade said. “First, you’re already going through being diagnosed with cancer, and the stress on you and your family. But then, instead of having a team of doctors that say, ‘We got you. This is what we’re going to do. It’s going to be okay. We’re going to fight through this,’ it’s ‘I can’t find a doctor. Nobody will take me in.’ And now, your family is freaking out.”

Andrade spoke about cancer patients who are obviously ill, yet work longer hours to raise funds for their treatment, borrow money, and sell their possessions and property, only to find themselves deeper in debt.

To this end, the video and social media campaign is followed by a letter-writing campaign that includes community stakeholders committed to the Ni uno más movement. “Our goal is to get 25 organizations, health departments, FQHCs, and funders to join us. The letters will be delivered to area cancer centers, as well as the National Cancer Institute,” she said.

The call to action is to get cancer centers to change their charity policy to allow people who reside in their service area [not] to be required to produce a social security number in order to apply for assistance.

“It’s literally one policy we’re asking them to change to make access more equitable,” Andrade said.

El Centro is a member of the Kansas City Health Equity Learning and Action Network (the LAN), under the leadership of the Health Forward Foundation and in partnership with the Institute for Healthcare Improvement (IHI), and the KC Health Collaborative (KCHC). The LAN actively develops comprehensive strategies and action plans to dismantle medically racist systems that circumvent optimal health and perpetuate health inequities for people of color.

With more than 50 organizations participating, the LAN provides a forum for engagement, girded by a shared agenda, with education, training, tools, and expertise to markedly change systems, policies, and structures. The goal is to eliminate disparities in health care delivery, while realizing measurable improvements steeped in equity-centered, culturally responsive health outcomes for all health care consumers.

This article is the third of a series of articles that cover the systems-change work of the LAN and several of its members. Tonia Wright is the publisher and editor-in-chief of accessHealth News, which covers health policy and health equity-related topics.