Fernanda Pereira, a native of Brazil, had some basic misunderstandings about the U.S. health care system. Here are two:
1. She used to take her asthmatic son, Ycaro, to the emergency room every time he needed a refill for his inhaler. She didn’t know she could simply call the doctor for a prescription and pick it up at the pharmacy.
2. She was confused and anxious when Ycaro, 11, was diagnosed with childhood depression. “Here, it’s normal for kids to be in therapy; in Brazil it’s not normal, ” Fernanda said. So, she cancelled or skipped 10 pediatric therapy appointments.
Enter Erica Guimaraes, a community health worker, and part of an ambitious program here to provide better, more effective care to poor, chronically ill patients — some who cost more than $200,000 a year to treat.
Since October, Erica has visited the Pereira’s home at least twice a month to help them deal with their medical problems, mental health struggles, cultural challenges, and anything else that comes up. On a recent visit to the family’s tidy brick apartment above a pizza place in Medford, Erica taught Ycaro how to properly use his inhaler. She explained to his mom, once again, the difference between Flovent and Albuterol. And she set up in-home therapy sessions for Ycaro. The boy has not been to the ER since Erica started visiting. “This winter, with Erica, it’s better,” Fernanda says.
Low-Tech Lessons in a High-Tech City
Here in this wealthy medical mecca of high-tech hospitals, Erica is part of an experiment to use low-tech lessons learned in the poorest of countries, Haiti. As Massachusetts, and the nation, begin to revamp a broken health care system, the need for these health workers, who fill a critical gap by supporting families in their homes, is clearer than ever before, says Partners In Health co-founder Paul Farmer, the doctor famed for developing a cadre of such workers in Haiti. “There has been more discussion about the need for innovation in this arena this year than ever before,” he said. We are finally acknowledging that “it is very expensive to give bad medical care to poor people in a rich country.”
While Fernanda’s daughter Katherine, 4, watches a Dora video, Erica and Fernanda chat in Portuguese, intimately, like sisters (they are from the same state in central Brazil) about the challenges of dealing with the new 4-month-old baby. Erica helps fill out a form so the infant can get health insurance. She’s frequently on the phone with MassHealth — Pereira has missed some key deadlines which led to the children getting dropped off insurance. Erica handles that, along with the problems of 21 other children who are part of her caseload.
Henrique Oliveira, another community health worker, recently spent four hours working with one of his patients — a morbidly obese, depressed mother of three children still in diapers, with a recently laid-off husband — on how to clean her truly filthy apartment. “Sometimes even I get overwhelmed,” Henrique said. “But I just take it one step at a time.”
Navigating a Complex System
Community health workers fill a crucial gap in the health care system: they are part nagging mom, part medical fixer, part translator and guide through the daunting insurance and social service bureaucracies that can overwhelm even the most savvy health care consumer. These workers, carefully screened and trained, patch together the kind of care that doctors and other medical providers can’t possibly offer — and were never really trained to deliver. They take on the harsh nitty-gritty of their economically-strapped patients’ lives: the transportation and school and housing problems, the bad food and ubiquity of drugs, the social and employment obstacles that can devastate families. These problems, left untreated, can exacerbate illness, and what was once preventable becomes chronic and eventually acute. Hospitalizations and ER visits accumulate and health care costs continue to rise.
Community health workers are supposed to help break that cycle. “It’s not necessarily about the specific tasks they do, it’s about the relationships, the constant accompaniment, the overall promotion of wellness,” says Dr. Heidi Behforouz, an internist and associate physician in the Brigham and Women’s Hospital Division of Global Health Equity, who serves as medical director for the new Network Health Alliance program. “It’s not reimbursable, but it’s powerful.”
The new program deploys community health workers, who earn from $38-$40K a year, as foot soldiers in a “care management” team that includes nurse practitioners, social workers, mental health and behavioral specialists and others. The goal is to bring the most complex, disengaged (and expensive) patients back into the primary care fold and teach them how to better take care of themselves and their families.
The project is modeled in part on PACT — Providing Access to Care and Treatment — a program Behforouz, also an associate professor at Harvard Medical School, launched at Partners In Health, which is better known for its groundbreaking medical work in countries like Haiti and Rwanda. Indeed, it is PIH’s development of a corps of community health workers, or accompagnateurs, in Haiti, and then in Peru and across Africa that became a model for its U.S. efforts. (Today, PIH trains and employs over 2,000 Haitians as accompagnateurs, and these health workers were critical during last year’s devastating earthquake and subsequent cholera outbreak).
The Holy Grail: Better Care, Lower Cost
PIH’s local PACT program, launched in the mid 1990s in Roxbury, hires community health workers from the neighborhood to help supplement the care and treatment of the most marginalized people in the city: late-stage AIDS patients, many who are mentally ill, traumatized, using drugs and without secure housing.
An analysis found that after patients were on PACT for two years, the program realized a net savings of more than 15 percent. Other PACT-like projects have been launched, in New York City for patients with AIDS, for instance; similar projects use the same basic design but target other diseases that disproportionally impact the poor, like diabetes. This type of approach — primary care-focused with readily accessible backup treatment and social support brought right to the patient’s doorstep — appears to deliver better quality care at lower cost, the Holy Grail of the entire health system.
“This is a transformational moment for primary health care in the United States,” says Paul Farmer. “In the shadow of Harvard’s massive teaching hospitals, Heidi’s signal contribution has been training community health workers to deliver care for chronic diseases in people’s homes and neighborhoods. Whether in Rwanda or Roxbury, community-based care is the highest standard of care for chronic disease; community health workers make care more effective and efficient even as they make it more patient-centered and humane.”
The new PACT-like program, called Network Health Alliance, is a partnership between Cambridge Health Alliance, its managed-care partner, Network Health, and Commonwealth Care Alliance, which hired the Iranian-born, Harvard-educated Behforouz. (Commonwealth Care runs a comparable program for chronically ill seniors, and was able to cut their hospitalization rate in half).
Launched last year, Network Health Alliance now serves 2900 poor, chronically ill patients, including 700 children.
One Patient: $50K Per Month
Many of these patients have complex mental and behavioral problems and all have at least two chronic medical conditions. Dr. Pano Yeracaris, vice president and and Chief Medical Officer at Network Health says most of these patients cost between $500 and $15,000 a month to care for — the most expensive patient is over $50,000 a month. The patients are separated into groups, including “high touch,” who need lots of intervention from a variety of specialists, including visits from the one of the program’s 10 health workers, to “medium touch” patients who are carefully monitored, with frequent check-ins and round the clock phone support available from a nurse practitioner.
There is currently no data available on whether the program is saving money. The up-front investment was “a few million” (the directors wouldn’t tell me precisely how much). Behforouz says the program may actually lose money in the first year, but in three or four, costs might began to decrease by 2-3 percent. (Initially, cost-saving estimates were higher. But because some of the patients involved cost less than expected, and because many of them “churn” off the Network Health plan, which they must be on to be eligible, the projected cost savings is now more conservative). So, the question remains whether this type of staff-intensive program — however beneficial it is for patients and providers — will actually win longer-term funding and support in the current economic climate.
For now, Behforouz says, the program is focused on prevention: for instance, many patients are being admitted to the hospital for poorly controlled diabetes — admissions which likely would have been unnecessary with proper oversight. (It’s the same story with a range of illnesses: asthma, pulmonary disease, gastrointestinal problems, alcohol-related disorders, recurrent cellulitis, congestive heart failure). “We’re interested in seeing health care utilization patterns improve, hospitalizations and ER visits go down, improved engagement with primary care and behavioral services, improved health quality and improved self-management skills,” Behforouz says.
It’s not going to be easy.
A Family Out of Control
Enter the Revere apartment of Jessica (you’ll see in a minute why I’m not using her last name) and you’re immediately hit with an overwhelming sense of chaos: the place is trashed, the diapered children — ages 1, 2 and 3 — are dirty, the baby has an odd rash on his body; old, dried food cakes the trays of the kids’ high chairs. The most striking piece of furniture is a huge, industrial garbage can sitting right in the middle of the kitchen. Jessica is morbidly obese, and she seems to have given up on controlling her frenetic kids, none fully clothed in the middle of the day.
The oldest girl, Brianna, is overly solicitous, but sweet — she immediately jumps on me with none of the normal self-protective wariness a child might demonstrate on encountering a total stranger. Despite repeated orders, Brianna doesn’t really get the concept of an “inside voice” and already has outsized problems: developmental delays and difficulty managing her behavior, she screams, sometimes bangs her head against the wall and recently came home from daycare with bite marks on her arm. (Jessica immediately pulled all the kids out of the day care). Despite Jessica’s certainty that something isn’t right with Brianna, she says the pediatrician won’t offer a definitive diagnosis — she doesn’t want the child “stigmatized” at such a young age.
Jessica’s husband recently lost his job at the Dollar Store, so he’s home cooking noodles for the kids. About six months ago, he was screaming at his daughter so loudly that a neighbor called 911. Now the state Department of Children and Families is involved, though they haven’t taken any action yet.
And Jessica? Here’s is a partial list of her health problems: schizoaffective disorder, asthma, generalized anxiety disorder, PTSD, insomnia, anemia, depressive disorder. She doesn’t have a car, so getting to appointments with her children in tow is a major ordeal. Recently, she managed to get them on a city bus, but the driver kicked them off because the children were too wild.
One agency recommended parenting classes.
I asked Henrique Oliveira, the community health worker, how he can even begin to help this family with so many needs. “I have to work step by step,” he says, offering a list of specific tasks. “I can’t do everything at once.” Three months ago, Henrique said, Jessica’s husband mentioned having another baby. “I was speechless,” Henrique said. “I told them, ‘You guys really need to think about this first. You are dealing with three kids that you are having trouble managing and you’re thinking about having another one? That’s not a great idea.'” He recently scheduled a gynecologist appointment for Jessica to get birth control.
Health workers are supposed to “empower” patients to help themselves, but still, Henrique admits, he recently “picked up a sponge” in an attempt to teach Jessica the basics of scouring a bathroom. “She has no idea how to organize and clean the house,” he said. “I tried to show her, not do it for her.”
Frankly, it’s hard not to feel hopeless about the prospects for this family. I left the apartment wondering if any system in the world could take these fragile, disconnected people, all of them, and somehow, make them better.
But a few weeks later, I got email from Henrique telling me that Jessica and her family, seemingly in such a deep and inescapable rut, are doing a little better.
Here, slightly edited, is what Henrique wrote:
The Family is doing ok! They finally, last week, were able to find a Day Care. All 3 kids are going to day care now.
Jessica is looking for a job now (just gave to her the information about a Job Fair in Somerville).
She is seeing a new psychiatrist and just started with new meds (feeling much better).
She is also scheduling an appointment with an audiologist.
I will see her this week to start teaching her how to clean the house.
I stopped by last week with a Behavior Health NP to do a new assessment.
Jessica is scheduling an appointment to do a genetic test with Brianna, to get a better diagnoses about her.
I was able to engage P. (husband) with his Care Manager and now he is going to schedule the appointments. The Care Manager will engage him with PCP/Psychiatry/ Job search.
We all getting together next week for a meeting.
(A 2011 Favorite)