As the U.S. government shutdown entered its second week, a handful of President Barack Obama’s campaign volunteers came out on Thursday to handout information on the Affordable Care Act aka Obamacare at Union Square in Manhattan.
The event was part of a national day of action promoting Obamacare organized by Organizing For Action (O.F.A.), a nonprofit successor of Obama’s 2012 re-election campaign. The advocacy group was designed to mobilize supporters and promote President Barack Obama’s second term agenda including healthcare, climate change, gun control and immigration reform.
Ariel Guerrera, 28, carried a large blue banner and distributed flyers with contact information to register for federal health insurance. For the past year, the East Harlem resident has volunteered with Organizing For Action.
“It is important for us to let people know where they can get registered [for healthcare],” said Guerrera, “Too many people in this country do not have health insurance and if something happened, it can ruin a life.”
Guerrera has asthma. Since he left his job in February, he doesn’t have health insurance.
“My prescriptions for asthma are very expensive and I can’t afford it right now,” he said. He planned to sign up for insurance through the Affordable Care Act in a few weeks, “I feel lucky for not being sick,” he said.
New York is one of the biggest markets for the new insurance plan. Last Tuesday, the New York State of Health (NYSOH) announced that over 40,000 New Yorkers have signed up for the Affordable Care Act, more than any other state.
“We are one of the few countries in the world that does not have universal health care,” said Guerrera, ”Obamacare changed that.”
Yael Jacoleson-Zieff, 57, a volunteer with O.F.A., lost her job and her health insurance during the recession in 2008. Since then, like Guerrera, she has not been able to afford health insurance, until now.
“The system was slow but I think that losing two hours in order to get health insurance, it is not a great sacrifice,” said Jacoleson-Zieff, of the Upper East Side in Manhattan.
Jacoleson-Zieff advocated for Obamacare since the first battles on Capitol Hill, four years ago.
“I believe that health insurance should not be only for rich people,” she said. Nobody should go bankrupt, stay sick or die because they are sick.”
Sitting in Union Square next to O.F.A. volunteers, three workers from the Lesbian, Gay, Bisexual & Transgender Community Center in New York were also helping residents through the process of applying for health insurance.
Called “navigators”, these workers are hired under federal grants to assist individuals, families, small businesses, and their employees at no cost in the health insurance application and enrollment process.
In July New York state awarded $27 million in grants to 50 diverse organizations like the LGBT Community Center for healthcare outreach.
Janice Cruz, 30, of Bushwick, Brooklyn has worked at the LGBT Community Center’s healthcare outreach for the past month.
“There is a lot of misinformation about healthcare, so it is great to talk to people and make them feel more comfortable,” said Cruz.
According to a report from the liberal think tank Center For American Progress, LGBT people are more likely than the general population to lack health insurance coverage.
Darryl Fountain is soft-spoken, diabetic and good at making car bumpers. At least, he was good at it. Fountain received his pink slip this June, and now as the clock begins to wind down on his unemployment benefits, the 46 year-old has been left scrambling to find a way to manage an expensive and life-threatening disease.
Flanked by his mother and sister-in-law in the grey plastic chairs of the St. Francis Cabrini Clinic waiting room, Fountain speaks so quietly he’s almost impossible to hear. Probably too old, he said, to find further employment in the auto industry, Fountain has a specialized manufacturing skill set and few prospects. Cabrini Clinic, a free primary care clinic located in Southwestern Detroit, has become a lifeline, helping Fountain keep track of his many medications, making sure his prescriptions are filled on time and that his blood sugar is monitored. The risk of death for people with diabetes is about twice that of people without it.
It’s a familiar story—hospitalized twice since losing his job and insurance, Fountain has already reached a federal insurance assistance cap. Despite what his sister described as borderline mental deficiencies, he also won’t qualify for disability benefits.
“Medicaid has cut so many—you have to have kids now, or be disabled—and they don’t want to help people like Darryl,” said Angela Anderson, Fountain’s sister-in-law. “What do you do? You’re not really able to work; you have no insurance and no income. What do you do?”
This is the face of Detroit’s newly uninsured, a population who’s growing numbers are swelling the ranks of an uninsured community that has already far outstripped resources in a city that over the past 15 years has lost 60 percent of its primary care physician capacity, has no public hospital, and seemed on the brink of financial catastrophe as recently as 2008. Buffeted by sustained economic collapse and an unemployment rate hovering around 13 percent, a fundamental lack of adequate health care is simply another in a long list of societal inequities.
Left to their own devices, the lucky ones like Fountain may be able to make contact with clinics like Cabrini. Others, like Dwanna Myree, get creative. Myree, a 39 year-old mother of three was diagnosed with Multiple Sclerosis in 1996. A former payroll officer, Myree lost her job and her insurance three years ago. With MS medication running close to $1000 a month, Myree found inspiration in an episode of the Montel Williams show. Williams, who also has MS, told viewers to reach out directly to drug companies. Myree made the call, and now receives shipments of medication for free through an organization called MSLifelines.com.
Always on the lookout for free promotions offered by area eye doctors and other specialists, Myree struggles to pay for essential neurologists visits out of pocket, juggling bills and her unemployment allowance, while continuing to advocate for her still-pending disability. Her benefits will run out in June of 2012.
“I have to fight, and it takes everything out of you,” she said. “I guess I just learned to maneuver just enough tot get by.”
In an attempt to alleviate some of the stresses felt by individuals such as Myree, the community is starting to fight back, too. Recognizing their city’s dire need for comprehensive primary care, physicians, federally qualified health centers (FQHCs) and other community clinics have pieced together a safety net of sort in an effort to create medical homes for Detroit’s vulnerable underinsured and uninsured population.
Sister Mary Ellen Howard has been taking care of the uninsured in Detroit for decades, first as a nurse, then as a hospital adminstrator. Eight years ago Howard took the position of executive director at the Cabrini Clinic, where she is ideally placed to observe trends in the community. And what she sees now is worrying.
“I would say historically the people we’ve seen at Cabrini grew up in the welfare system,” Howard said. “They were born into poverty and they know how the welfare system works. The people we’re seeing the last couple of years do not fit that description. They did not grow up in poverty, but have recently lost their jobs, lost their homes, lost their insurance.”
For these people, seeking out advice and free medical care can be confusing, laborious, and embarrassing. “They don’t know where to go for help, they haven’t got a clue,” Howard said. “And in fact they take a lot more of our time and resources because they don’t want to ask for help, they don’t know how to get their utilities back on. They do not know how to work the system. When they go to the Department of Human Services and they tell them they’re not eligible for Medicaid, they believe them.”
Founded in 1950 by Most Holy Trinity Church, the Cabrini Clinic is the oldest free clinic in the country, said Howard, a 68-year-old retired nurse and passionate health care advocate who shows no sign of slowing down. The modest redbrick building sits on a shaded cul-de-sac, within sight of the newly neon-lit high rises of Woodward Avenue. But a revitalizing downtown does little to comfort the veteran clinician.
“Its pretty frightening,” she said. “I think this pattern is going to continue. There’s a real trend in our state and federal government to make of the victim a perpetrator: poor people are to blame; they’re causing the problem. “
Almost 40 million people living in the U.S. today do not have health insurance. In 2009, 164,000 of those uninsured lived in Detroit. Two years later, clinic directors like Howard put that number in the 200,000 range—around 22 percent of the city’s population. In New York City close to 14 percent of the population is uninsured. In Philadelphia it’s closer to 15 percent, and in Chicago 19.5 percent. The national average is 13 percent. The uninsured are three times as likely to go to the emergency room, and to be much sicker when they get there. They also are more likely to live with preventable diseases, and to develop depression.
Cabrini Clinic sees about 150 patients a week. Those who get appointments benefit from a dedicated volunteer staff that includes over one hundred doctors, nurses, pharmacists and social workers. It is a highly effective, total package system that typifies the concept of comprehensive care—the opposite of a one-time stopover in the local ER. But the high quality of the care also limits its volume.
Further southwest, Covenant Community Care director Paul Propson prefers a different metaphor to describe some of the problems plaguing Detroit’s underserved population.
“It’s less of a safety net and more of a desert with a few oasis,” Propson said. “Hundreds of thousands of people are looking for these oasis. Many of them assume no one will help them. So they sit at home getting sicker and sicker until they have to go to the emergency room.”
Covenant, one of Detroit’s four FQHCs, has three clinics, two mobile trailers—one medical and one dental—and a school clinic. Unlike Cabrini, Propson also employs a staff that includes seven full-time doctors, three full-time dentists and three full-time nurses. Through a combination of very low patient contributions, grants and private donations, Covenant sees about 10,000 patients a year, 7,000 of them uninsured, and turns no one away.
“One myth we hear a lot is all poor people have Medicaid,” Propson said. “Some people have Medicaid. Our patients don’t generally qualify for it. They’re adults, and unless you’re disabled, you’re probably not going to get it.”
Chronic diseases like obesity, diabetes and hypertension are prevalent.
“These are high cost diseases they are not equipped to handle if they’re unemployed, or working a minimum wage job,” he said. “There’s no way they are not going to die from complications.”
Like other veterans of Detroit’s health care system, Propson is continually working to bring together resources and create partnerships and organizations in order to tighten the so-called safety net neighborhood by neighborhood, community by community.
On a recent rainy afternoon, Propson followed the center’s mobile dentistry unit to Crossroads homeless shelter, where Covenant donates free dental services.
“There is a lot of value in finding out what’s wrong,” Propson said. “We’ve identified cancers during check-ups.”
The units also serve an outreach purpose, identifying people outside of the medical system and attempting to find them a viable, sustainable base for primary care.
Carol Burnett is a vivacious mother of four who’s bright smile displays a missing bottom tooth. Smiling shyly, she reaches up to tug on a second upper tooth that wiggles obligingly. A second tooth on the bottom is also loose. If not for the mobile unit, she “would have let these go, yes I would have to tell you the truth. I’ll sit in that chair until they make me get out of it.”
Burnett lives in the area and frequents Crossroads for help with food and clothing. The shelter also spends $50,000 a year—the largest slice of its budget—on client prescriptions. In May Burnett badly fractured the bones in her leg and hip, requiring a trip to the emergency room and frustrating her search for work. Unemployed and uninsured, Burnett lives off of the $200 dollars a month she receives in subsidies for the two children still living at home, as well as whatever money her boyfriend, a racetrack horse groomer, can send home.
Burnett is the type of patient Propson hopes the mobile unit and shelter volunteers will be able to draw into the safety net. Wary of false promises, Burnett has never reached out to free clinics in her area, and views the emergency room as her only option for medical attention.
The use of ER’s as a substitute for preventative primary care creates a lose-lose situation, said Dr. Michael Kobernick, director of emergency services at St. John Providence, one of the city’s largest health systems. “All emergency departments see a lot of uncompensated care,” Kobernick said. This puts stresses on the hospital, as well as the patient—for whom the bill will eventually be due.
But the problem is not simply a financial one. Emergency room physicians are trained to think in a short-term capacity. It is their job to save lives, not ensure their patient’s quality of life for the next decade. Patients seen in ERs are getting “episodic, not primary care,” Kobernick said. “The problem is when they get only episodic care, they have to wait for something very bad to happen” before seeking treatment. For example patients with high blood pressure may wait for a stroke. “The rates of dangerous and or fatal side effects go way up,” he said.
Kobernick also volunteers his time with a group of doctors called Physicians Who Care, a group that works to shore up the holes in primary care of the uninsured.
Primary care resources have been hit especially hard in Detroit because of population loss. The number of practicing doctors is generally proportionate to the number of insured patients in a city. In Detroit, the insured population has declined, or held steady, while the number of uninsured patients continues to climb–increasing the need for volunteers like Kobernick to keep pace with the rising demands of the uninsured.
Propson offers a simple solution. “People need to be more passionate about caring for the uninsured then they are about making money,” he said. “We, as Detroitians, have the resources to see everyone. And we all need to give a little more.”
Across the street from Crossroads and the mobile dentistry unit, the bright blue banner of a private dentist strikes Propson as maddeningly ironic. “That’s the mystery and the tragedy of health care,” Propson said. “He feels he can’t help them, they feel they can’t go to his door.”
Back in the Cabrini Clinic’s cool emerald waiting room, the crowd has thinned as five o’clock melts into six, seven, eight o’clock. The volunteer staff, still cheerful after four hours on their feet call in the last prescriptions to the pharmacy team.
Veronica Green is one of the last to be seen. Petite, cheerful and missing her top teeth, Green is unemployed at 53, with five grown children and a weekly allowance of food stamps. Her Medicaid ran out years ago, although she’s not sure why. One day she went fill out her forms and they told her coverage had simply run out.
A long-time patient at Cabrini, Green feels safe here, and dutifully meets her monthly appointments for refills of Zantac—an acid reflux medication—and vitamins. The six pills a day “make me stronger, they make me want to eat. Otherwise I feel rundown,” she said.
It had started to rain. Fountain fussed over his elderly mother’s socks, making sure she was warm enough. In order for the safety net to ensure long term protection for patients like Fountain and Green, the system will need to include a coordinated , integrated system of care, Propson said, that will cut down on the inevitable waste of patchwork, incremental programs.Voices of Detroit Initiative (VODI) has been developing a virtual network along these lines, but so far have run into problems due to a lack of funding. “If the Affordable Care Act works, more people will get on Medicaid, and the insurance money will help Covenant expand,” Propson said. But “the fog is thick, and there are always going to be people who slip through the cracks, even if ACA works,” he added.
Like Green, Fountain feels safe at Cabrini. “They treat the patients good,” he said.
“Everybody likes it—you can tell from the atmosphere.”
Angela Anderson examined her bright-orange nail tips. If her city had been slowly deteriorating before, “now, it’s really bad.” Without Cabrini, her brother-in-law would have no way to pay for his meds, and no resources if his disease becomes suddenly aggressive.
“I’m here for support,” she said, watching her brother-in-law out of the corner of her eye. “This place, it’s a big help.”
Dr. Elliot DeHaan thought he knew what he was signing up for when he accepted an infectious-disease fellowship at Bellevue Hospital Center.
During his two years at Bellevue, DeHaan has diagnosed patients from Ecuador with neurocysticercosis — a parasitic infestation that attacks the brain — and patients from Latin America and the Caribbean with echinococcus — a disease caused by tapeworms that can produce cysts in the liver, spleen, kidney and bones.
One of DeHaan’s colleagues treated a patient from Argentina for Chagas disease, a parasitic infection caused by the feces of reduviid bugs. The infection is so rare in America, DeHaan said, tests for the disease had to be conducted at the Center for Disease Control and Prevention instead of through Bellevue’s in-house lab.
It’s not every day DeHaan encounters a patient with these ailments, but he said he regularly sees people with tuberculosis and malaria, which native-born patients rarely have.
These are diseases doctors don’t get much exposure to in other American hospitals — and that’s why DeHaan signed up.
He wanted to treat patients from all over the world and get experience of diagnosing and treating diseases uncommon among native-born Americans. Because Bellevue, on First Avenue near 27th Street, serves a large immigrant population, DeHaan said it was the perfect place to get a feel for the diseases that dot the globe.
But serving patients from a broad swath of countries presents two major obstacles, according to DeHaan. Doctors at Bellevue must overcome language barriers and gain the trust of unauthorized immigrants worried about being deported.
“There are specific challenges associated with treating immigrant patients,” DeHaan said. “Bellevue is one of the best places to learn about them.”
Bellevue doesn’t keep statistics on how many immigrant patients come through its doors, according to the hospital’s spokesman, Steve Bohlen. That’s because Bellevue doesn’t want to discourage illegal immigrants from visiting.
“We want them to come, so we don’t keep track of their documentation status or where they’re from,” Bohlen said. “We try to make sure no one is afraid to get treatment.”
DeHaan estimates that between 35 to 45 percent of his patients are immigrants. They hail primarily from Eastern Europe, Southeast and Central Asia, West Africa and Latin America.
While he takes a patient’s birthplace into account when attempting to diagnose their illness, DeHaan said it’s never the only factor he considers.
“It’s not just the particular country they’re from,” DeHaan said. “You want to go deeper.”
DeHaan explained how he might diagnose neurocysticercosis using the information about the patient’s symptoms and homeland.
“If you have a person who’s coming in with first-time seizures and he comes from a country where the disease is endemic, then you would want to do an MRI to check for neurocysticercosis,” DeHaan said. “But you don’t want to just assume that everyone who comes from a certain place has this certain disease.”
While a person’s birthplace can be helpful in determining their diagnosis, DeHaan said undocumented patients might not tell him where they’re from.
“Patients are going to be suspicious about whether the doctors are going to treat them, or if after they’re treated, they’re going to be deported,” DeHaan said. “The fact that you’re undocumented is going to affect your relationship with the medical-care provider.”
NYU Professor Robert Holzman co-authored a study that suggests undocumented patients may avoid hospital care because they’re afraid of being deported. His research found that, when compared to documented immigrants and native-born patients, undocumented immigrants at Bellevue endured symptoms of tuberculosis for a longer period of time before going to the hospital.
“We have no direct evidence on what the cause is,” Holzman said. “Our speculation is that people may have delayed seeking care because they feared revealing their undocumented status and that that might lead to deportation or other interactions with immigration officials.”
Holzman said doctors at Bellevue do not report patients’ immigration status to law enforcement. The Health and Hospitals Corporation, which runs Bellevue, has launched campaigns to let immigrant patients know their information is kept private. But, Holzman said, his study suggests greater outreach is needed to make the point clear.
“Finding this kind of a pattern in the people who get care suggests that maybe that information could be presented to the relevant communities in a more effective way than it has been,” Holzman said.
DeHaan said he must work especially hard to gain the confidence of undocumented patients.
“You have to assure them that anything they say is not going to be used against them,” he said. “You have to be aware that they may not be forthcoming.”
A Colombian undocumented worker who did not want to give his name was surprised to hear that Bellevue treats patients without asking for documentation. He works as a hot dog and pretzel street vendor in Williamsburg and moved to America three years ago. He said he is working on getting legal status, but he came to America illegally.
“That’s good to hear,” he said when told Bellevue doesn’t turn patients away. “I hope that’s true.”
He said he’s had no major health issues since venturing to the States, but he’s avoided seeing the doctor a couple times because he’d rather not risk being reported.
“If I had an emergency, I would go to the hospital no matter what,” he said. “But for smaller things, I would not want to get in trouble.”
While some immigrant patients struggle with issues of trust, DeHaan said others come up against a language barrier. Doctors at Bellevue rely on a 24-hour translation line to help them communicate with their patients.
“You always lose something when someone is translating for you,” DeHaan said. “But it’s obviously better than nothing, and it’s the best you can do in a lot of situations.”
While completing his residency in Boston, DeHaan said he experienced the pitfalls of relying on translation. The word “dizzy” in Cantonese is very similar sounding to the word for “sick,” DeHaan explained. As a result, some patients were unnecessarily prescribed medication for dizziness because they said they felt sick.
“You have to ask them (whether) the room (is) spinning,” DeHaan said. “You have to be more specific in your discussion with them and not just use terms that can be easily misconstrued.”
Holzman said doctors at Bellevue must also be aware of their patients’ cultural backgrounds when determining what they’re trying to communicate.
“Sometimes it’s difficult to interpret what people say without having some knowledge of the place where they’re from,” Holzman said. “You have to be alert to things that people say that will convey information that, if you didn’t have that alertness, would be meaningless to you.”