A finger on Myrtis Henderson's left hand is stuck in a bent position, a cyst on the tendon freezing any motion.
Ms. Henderson is a longtime patient of Jeannette South-Paul at the Matilda Theiss Family Health Center in the Hill District. Dr. South-Paul has helped her keep control of her diabetes, but the finger is another matter.
"The only thing that is going to help that is a surgical procedure," Dr. South-Paul told Ms. Henderson, an unemployed pre-school teacher, at a recent appointment. "And until you have insurance, I can't help you."
Ms. Henderson, 45, is one of many patients who fall into a yawning gap in the health safety net. They need specialty care but are unable to get it because they don't have insurance or have inadequate insurance. They either can't get a specialist to accept them as a patient or can't afford to pay upfront for the visit.
The specialist gap exists because few clinics for low-income patients have specialists on staff. The clinics often have no direct connection with the specialists, who are typically affiliated with hospitals or large practices. Even when they do have connections, they can't always arrange timely, affordable specialty care.
Many specialists aren't eager to take low-income people because they aren't likely to be reimbursed well for the care of such patients, who are either uninsured, on Medicaid, or underinsured. While the Affordable Care Act opens up coverage to patients who didn't have it before, some carry deductibles that are so high they still can't afford to see specialists.
Moreover, even if the clinic can schedule an appointment, the patient might not end up going because there are upfront charges that put the appointment out of reach.
So the patients, as well as the clinics and doctors who treat them and recognize the need for specialty care, struggle with the cycle of sporadic, incomplete care.
Even if a patient begins a medical journey at a hospital emergency room, they often find that unless their health problem is imminently life threatening, they are given minimal service, and they have to try to access a specialist on their own.
Back at the Theiss clinic, Dr. South-Paul tries to work the patchwork system to get care for the patients. She is chair of the department of family medicine at the University of Pittsburgh School of Medicine as well as a physician at Theiss, which is affiliated with UPMC.
"There is one orthopedic surgical place I know that does free procedures once a month," she told Ms. Henderson. "But they only do hips. But I'll do my best and see if we can find someone."
"It just bothers me all the time," Ms. Henderson said about the ganglion cyst on her middle finger.
"I wish I could just make it go away. But I can't," Dr. South-Paul replied. "I could get a [cost] estimate." But it wouldn't be a free or inexpensive visit, she said.
"I'll wait to see if I can get in the [Medicaid] system first," Ms. Henderson answered.
But two months later, Ms. Henderson still had not had the surgery because she had not yet qualified for Medicaid and could not afford to pay for it out-of-pocket.
Falling through the cracks
Cases like Ms. Henderson's are not an aberration. Medical directors, doctors, nurses and other patients say failure to get access to specialty or diagnostic care happens all too often for the uninsured and underinsured.
"They fall through the cracks," said Diane Nieder, the nursing director for Primary Care Health Services in Pittsburgh, Allegheny County's largest network of federally qualified health centers.
Without the speciality care they need, she said, "The patient lives with it, ends up in an emergency room, or they come back here and we try to Band-aid it the best we can and deal with it."
In one major paper in 2007 from researchers at Harvard Medical School, surveys from 439 federally qualified community health centers (CHCs) around the country found the difficulty accessing specialty care was true not only for those without insurance -- a long known problem -- but also those on Medicaid.
"Our findings suggest that lack of access to specialty services is a more important problem for CHCs than previously thought," the authors wrote. "Referrals to off-site specialty services are frequently needed, yet medical directors reported major problems obtaining access to specialized medical and mental health services for uninsured patients and those covered by Medicaid. Particularly for the uninsured, these reported problems are pervasive and affect sizable numbers of patients."
There is no data about how many patients lack access to specialty care. But there are roughly 35 million uninsured Americans and millions more who are underinsured or on Medicaid. All of those people potentially could have difficulty getting specialty care should they need it.
There also is no national data that shows the cost to health systems when poor patients do not go to see a specialist when they need to. What is known is that inpatient care and emergency room treatment are more expensive than outpatient office visits with specialists. And yet for health care providers, the current payment system acts as a disincentive to providing specialty care to the poor. A 2013 National Institutes of Health study found that the average cost of a visit to the emergency department in the United States was $2,168. Many specialists charge at least $350, and office visits that involve procedures can cost more.
Leroi Hicks, now vice chair of the department of medicine at Christiana Care Health System in Delaware and author of the Harvard study, said the main problem is systemic.
"Even now, with all the changes we're going through with health care, we still operate under a system where specialists are operating under a fee-for-service model and not a plan for the patient's overall health," he said. Because of that, "we shouldn't be surprised that doctors who don't get reimbursed for a service don't provide care to people without insurance."
That's also why hospitals are not likely to provide more such care, said Ken Bream, a University of Pennsylvania physician who has long worked with underserved populations in Philadelphia.
"If the University of Pennsylvania was to announce it was going to start taking uninsured patients in for specialty physicians, our competitors, Jefferson [Hospital] and Temple [Hospital] would start referring their patients here in droves," he said. "They can't open the door a crack because people would rush in."
But specialists and hospitals often say they are not aware of patients facing barriers to specialty care, and that they readily accept such patients.
"That is not my reality," said Karen Shaffer-Platt, who oversees UPMC's Patient Financial Services Center, which helps patients apply for insurance coverage or charity or discounted care for the region's largest medical provider.
"There is no [financial] gate-keeping done for any request for an appointment" at UPMC, she said. "We are convinced we have a way to see every patient who wants to be seen."
Deterred by upfront charges
That stance is not surprising to Cheri Rinehard, executive director of the Pennsylvania Association of Community Health Centers, who spent 17 years working for the Hospital and Healthcare Association of Pennsylvania.
"I was part of these conversations where [hospital officials] truly believe they were doing everything they could and that there were not these big holes in the safety net," she said. "They just don't understand what patients go through after they leave the hospital or the doctor's office."
But safety-net patients and medical staffers say the problem isn't well recognized because of what often happens after the initial referral.
Patients sometimes do schedule the specialist or diagnostic appointment. But once they're told they need $350 up front to see the doctor because they don't have insurance, they're underinsured, or, more recently, their new Affordable Care Act bronze plan insurance has a $3,000 deductible, they simply never go, or they cancel without an explanation.
And no one is counting that person as one who needed but did not get specialty care. The problem is difficult to quantify because patients don't notify anyone that they have not received specialty care that was recommended, though primary care doctors see it regularly.
"I've seen that happen with my patients," said Diane Emes, a family practice physician in California, Pa., and part-time with Mon Valley Community Health Services, a federally qualified health center in Monessen. "Try getting a referral [with an uninsured patient]. It just doesn't happen. Or if they do, they don't go" when they're told how much it will cost.
After she realizes a patient of hers won't go to a specialist because of the out-of-pocket costs, or the specialist won't see them because they don't have insurance, Dr. Emes said she stops trying to refer the patient.
Then, she said, "sometimes you try to do what you can with stuff you can't really handle as a family practice physician."
If the patient's situation is more critical, she said she starts making what she called the "Hey buddy!" calls herself, asking other doctors if they or someone else would see a patient who won't be covered by insurance.
Multiple specialists said they get such calls and take on uninsured patients.
"I've taken care of a lot of people for nothing over the years," said Ronald Pellegrini, a prominent local cardiothoracic surgeon who has worked at Mercy Hospital, UPMC Passavant and now Forbes Regional Hospital. "Someone will call and tell the secretary or the office manager," and the doctor sees the patient.
That may be how it's often done, said Wilford Payne, for 37 years the executive director of Primary Care Health Services. But not everyone has that kind of access to specialists. "And that's no way to run a health system."
Though no similar program exists in the Pittsburgh region, there are programs in Indianapolis, Cleveland, Baltimore, suburban Philadelphia and elsewhere that bring together the health centers that serve the poor and the health systems that control the specialists and diagnostic services. They work to coordinate care so that any patient who needs specialty care can get it.
Groups of specialists also have tried to organize to provide such care, as a group in Pennsylvania's Lancaster County is doing.
Not all the efforts have succeeded or endured. But their organizers all recognized the problem and tried to solve what has been a systemic health quandary for decades.
One of those projects, the Cuyahoga Health Access Partnership in Cleveland, grew out of an effort that began in 2008 when all the major medical systems, federally qualified health centers and free clinics there came together to talk about access.
"We had all the players gathered around the table and said, 'We've got some of the highest quality healthcare available in the country here; we need to find a way to get uninsured people access,' " said Sara Hackenbracht, the program's executive director since 2011.
The result was that the major hospital systems, with the exception of University Hospital, agreed to make their specialists and diagnostic services available to patients who were qualified for charity or discounted care through the program.
The program takes any uninsured adult, 19 to 64 years old, who made 200 percent or less than the federal poverty guidelines.
By the end of 2012, 3,088 residents had been qualified through CHAP, and the program had made 4,035 specialty care referrals for them.
Perhaps most importantly to the hospitals, Ms. Hackenbracht said that surveys of CHAP patients show that 57 percent of them reported using emergency rooms less than before they were in CHAP, and 75 percent of those patients said they had not used the emergency room at all.
The program continues to grow, despite Ohio having adopted Medicaid expansion under the Affordable Care Act, meaning that fewer patients are without insurance coverage.
And now, Ms. Hackenbracht said, CHAP's board is talking about a new challenge: Underinsured patients who got their high-deductible or high co-pay insurance through the Affordable Care Act marketplace.
"I think we're going to have to move in that direction" and take on underinsured patients, she said.
Community health centers have long kept their own lists of specialists who were amenable to helping disadvantaged patients, and some had unwritten agreements with some hospitals that they could refer patients to.
But the Health Resource and Services Administration, which oversees federal health centers, recently began pushing health centers to get such agreements in writing to build more access for their patients.
In this region, only the Theiss health center and UPMC have such a formal relationship, though others have some ties.
Mr. Payne, whose struggling network of 11 health centers operates in some of the poorest areas of Allegheny County, is in conversation with UPMC to create an affiliation that would help support Primary Health Care Services.
"It would help us both," Mr. Payne said. "We'd be more financially secure and we'd be able to keep more people out of the emergency room."
Will Cook, president of UPMC Mercy, said he couldn't comment on the discussions, but said such an affiliation might happen.
"We are eager to talk to him because having FQHCs in neighborhoods is the future of health care, in my mind," he said. "They're already in the neighborhoods, which overcomes the transportation issues the poor deal with, and they're part of the neighborhoods."
Searching for solutions
Even with formal affiliations, problems persist. The executive director at an Indianapolis network of clinics affiliated with a health system says he too struggles with getting access for poor patients.
Jimmy Brown, head of HealthNet, said the ties his network of FQHCs has with IU Health are beneficial but still do not guarantee that his clients will be able to see specialists.
His physicians have to deal with the fact that some specialties won't take Medicaid patients, he said, and some specialties just have a very limited numbers of physicians.
Even when patients get to see specialists, the wait times are long.
"The uninsured and underinsured do have a difficult time getting specialty care. We're constantly trying to find a place for our patients to get specialty care.
Sean D. Hamill: firstname.lastname@example.org or 412-263-2579