Leticia isn’t sure where she is on the waitlist.
She knows it’s been about seven months since she asked a pro bono surgery program for help with her aching left knee, and her doctor says it could be another half a year until her number comes up. She knows there are other patients in front of her who can’t afford the procedure, and who, like her, are depending on volunteer physicians to get their lives back on track.
The 53-year-old mother of three, who asked that her full name not be used because of her immigration status, is pinning her hopes for relief on SPIRIT. It’s a program operated through the Sierra Sacramento Valley Medical Society for uninsured patients who need surgery. Its volunteer orthopedists fixed Leticia’s right knee a few years ago, and she says it feels good as new. But her rheumatoid arthritis is plaguing her left knee now, which can throw her off balance.
SPIRIT serves people who cannot get help at the emergency room because their conditions, while life-altering, don’t rise to the level of life-threatening — at least not yet. Across the state and the country, charity groups, hospitals and community clinics are working together to try to connect these patients to complex care that would otherwise be unattainable. For some, it means months — or years — of waiting for help.
Leticia consulted SPIRIT about her right knee when it started failing about five years ago. By the time she called the program, even simple tasks had become grueling.
“The pain was unbearable,” she said. “I couldn’t even stay on my feet for 15 minutes to cook … When I had to take a step, my knee would snap, and I was in pain.”
She waited a year for that first procedure. Now she worries the pain in her left knee will soon make her chores, and her warehouse job, impossible.
Like many undocumented immigrants, Leticia is not eligible for the comprehensive health insurance options created under the Affordable Care Act, and as a minimum wage worker, she said she couldn’t afford the cost of health insurance through her employer. In California, nine out of 10 undocumented residents are uninsured, compared with about one in 10 documented residents, according to the UCLA Center for Health Policy Research. Multiple legislative proposals this year aim to remedy that situation. In the meantime, programs like SPIRIT, with their long waiting lists, try to fill the gap.
There’s huge variation in what hospitals are willing to offer uninsured patients, and charity care has plummeted in recent years. In this climate, philanthropic medical organizations have become increasingly important.
Founded in 1995, the SPIRIT volunteer medical program has performed just over 1,000 surgeries, or roughly 40 per year. SPIRIT currently has 148 individuals on the surgery waitlist from the Sacramento area. Its referrals come mostly from community clinics.
SPIRIT does not ask about immigration status, but patients must be uninsured and meet income guidelines to enroll.
How quickly someone moves up the list depends on the type of surgery he or she needs, the number of other patients seeking that procedure and the availability of physicians with that specialty. SPIRIT only does outpatient surgeries, such as tonsillectomies, kidney stones and benign cysts. Its patient-screening form warns that there could be a three- to six-month wait for services, and that if the need is urgent, clinicians should not submit a referral. Those patients are left with few choices other than the emergency room.
There isn’t much money involved — just doctors volunteering their time and health systems donating operating space. The medical society puts considerable effort into recruiting physicians; it currently has about 95 on standby.
Janice Emerson, program manager for SPIRIT, says it’s a tough ask, especially for those physicians who are already accepting lower payments from Medi-Cal patients.
“They try their best to accommodate SPIRIT uninsured patients,” she said. “There’s not an awful lot of appointments ... The wait for some could be months long, and the patients are willing to wait. They really have no other choice.”
Sometimes, Emerson says, patients’ conditions become more dire while they’re on the wait-list, and they end up going to the ER.
Under state law, undocumented residents over 18 can be shut out of all coverage except “restricted Medi-Cal,” although some counties offer more. Restricted Medi-Cal only covers pregnancy care and emergency services, meaning the hospital can bill Medi-Cal for the surgery if skipping it would put the patient in immediate jeopardy. For example, surgery to save someone during a heart attack is covered, but a procedure that could prevent one down the line is not.
For the laundry list of procedures that don’t meet emergency criteria, patients are left to navigate a sparse and confusing landscape of charity programs. But those don’t cover everything. For example, when it comes to expensive drug treatments such as chemotherapy, patients may have a few options: pay out of pocket, try to find a drug company that has a discount program for the poor, or go without.
Dr. Andrew Loehrer, a surgical oncologist at Dartmouth University who studies the impact of health care reform on treatment access, says these pro bono programs have become crucial as hospitals turn away uninsured patients.
“Our health system is still profoundly incapable of meeting the needs of these vulnerable populations,” he said. “Patients are often left on their own to sort of figure out a way. … We aren’t creating systems that make it as easy as it should be for patients to get lifesaving treatment.”
When knee pain started plaguing Leticia, she asked the doctors at her Sacramento clinic, WellSpace Health, for help. Once they connected her to SPIRIT, she waited about a year for the phone to ring. She consistently checked in for updates.
From surgery prep to physical therapy, she says she didn’t get a single bill for the procedure. A thick purple scar above her knee cap reminds her daily of her gratitude.
“When I say that SPIRIT changed my life, it did change it completely,” she said. “Imagine, if it hadn’t been for this surgery, I wouldn’t be as I am now. I probably wouldn’t even have a job.”
She first heard about SPIRIT from Yesenia Barroso-Anderson, a patient services supervisor with WellSpace who has dedicated herself to knocking on doors on behalf of uninsured patients. Her drive stems from the years of watching her own immigrant parents skimp on health care because of trouble navigating the medical system. She says she sees patients every day facing the same challenges.
“It’s difficult,” she says. “There’s a language barrier. Even if the forms are in their native language, it’s not clear. So they bring us the forms, and we help them fill whatever forms are needed. And sometimes we get hung up, we call Medi-Cal and say, ‘What does this mean?’”
For Barroso-Anderson, getting someone to surgery is a long process. It starts with calling around to hospitals and applying for charity care — one form for the specialist, another for the operating space.
When that fails, she applies for SPIRIT. If the medical society doesn’t have the right specialist, she turns to Sacramento County, which has connections to other surgeons willing to pitch in.
“Sometimes we run against a brick wall, but we don’t give up,” she said. “We look for other resources. The need is great. People don’t know where to go.”
Many Americans have raised concerns about spending federal dollars on people who are not in the country legally.
Leaders from SPIRIT and other programs for the uninsured argue that treating these patients early prevents higher emergency room costs down the line.
Dr. Jorge Enriquez founded a charity surgery program in Bakersfield three years ago, after seeing too many undocumented patients with neglected, but treatable, life-disrupting conditions. Like SPIRIT, his program sticks to outpatient procedures such as cataract surgery and cyst removal. He says patients who need heart surgery or transplants “are in a tremendous amount of trouble, because they can’t go anywhere.”
“We concentrate on the patient that we can resolve their problem, and we can keep them productive for their families and for the community,” Enriquez said. “We do a lot of surgery for the working man.”
His program is called Cirugia Sin Fronteras, and it relies on negotiated discounts from local hospitals and laboratories. He is looking for more physicians to sign on.
“Most people don’t want to hear about this, it’s uncomfortable to think about their situations,” he said. “But at the end, our taxpayer money has to take care of that situation, which has no solution up till now, and it keeps growing.”
For Leticia, it’s all about keeping the plates spinning. She came to the United States more than two decades ago and is still applying for citizenship. The youngest of her three sons, the only one born here, will graduate high school this spring.
“I’m very thankful and happy,” she said. “(My youngest son) has got better options than my other two sons. The other two had to struggle a lot. But thank God, we are all OK. I’m very grateful for the opportunities that life and this program gave us.”
This project results from an innovative reporting venture – the USC Center for Health Journalism News Collaborative – which involves print and broadcast outlets across California, all reporting together on the state’s uninsured.
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