Concluding a report on his home visit, the social worker wrote:
The situation is both serious and urgent. This is a patient who needs a lot of support because of his level of disability. His mother is aged and ravaged by miserable poverty, she’s not well nourished, she’s not well housed, she’s not certain what tomorrow will bring. That’s the reality of Janel’s life. That’s why this is an emergency. So we need a plan. I remain available to help in any way with my team so Janel can have a better life.
The report included a list of both short-term needs (renting an adequate shelter, financial assistance for food, and some basic furniture and utensils) and long-term goals (finding or building Janel and his mother an accessible house in an accessible location and trying to find some type of employment for Janel’s mother).
When I discussed the report with Père Eddy, the priest and psychologist who directs the HUM mental health team, he lamented, “Have we managed to cure this boy’s tumor with surgery, radiation, and chemotherapy in the US only to have him die of hunger back home in Haiti?!”
It was a tragic truth. After all of the complex and costly medical and logistical coordination, we were failing at the most simple and inexpensive of interventions: housing and food.
I remembered back when I had envisioned Janel as a mildly affected college student, a straightforward big save, a chance to apply the PIH principles I aspired to. But every turn had a twist, each decision was overshadowed by a dilemma, and it was unclear if we had even really helped him in any significant way. Though Davidson’s success story had given me hope for how much modern medical care can change a patient’s life, Janel’s case was a painful reminder that medicine is powerless when it narrowly focuses on treating a disease, neglecting to address the patient’s social and economic circumstances.
“They always say in development work that you have to teach people to fish, not just give them a fish, or else it isn’t sustainable,” Père Eddy continued. “But do you know what, dear Aaron? Sometimes you just have to give them a fish! We can’t wait for it to be sustainable. In the meantime, they must eat!”
Fortunately, PIH runs Program on Social and Economic Rights (POSER), which serves both purposes: giving out fish and teaching people to fish. One of the core tenets of PIH’s model of care delivery is considering health beyond the limited notion of disease. Patients are more likely to get sick and less likely to receive healthcare if they are poor. So helping poor patients recover from disease and prevent future illness requires supporting them socioeconomically: housing, food, clean water, sanitation, employment, education, clothes. POSER would be lifesaving for Janel and his mother, but such socioeconomic interventions are complicated. In PIH’s description of POSER, they state:
Jealousy among people who do not receive a house or housing support through the program is another common challenge. . . . POSER staff should inform the community about why certain people have been selected to receive a house, while not violating the privacy or confidentiality regarding the medical condition of the recipient, if applicable. Being an advocate for POSER beneficiaries, and minimizing any conflicts that POSER activities may provoke is part of the job of POSER staff.
If we had a new home constructed for Janel and his mother and provided them with an allowance, would others in their community wonder why they had gotten special treatment while everyone else remained hungry in decrepit shacks? Would we be putting Janel and his mother at risk for mistreatment or robbery by intervening in this way?
When policymakers speak of compromises that must be made due to limited resources, Paul Farmer is known to counter that we are in fact in a time when there are more resources available than at any other time in history, but they just aren’t equitably distributed: the compromises and limited resources are for the poor, while everyone else enjoys the excess. Part of Paul Farmer’s message, as I’d always understood it, is not to forget the individual patients who make up the statistics of public health and policy. And yet in trying to reduce the suffering of one single individual, to right one inequitable wrong, what unintended consequences might lurk beyond? If we can’t resolve inequity for everyone at once, do our actions to help individuals create ripple effects that only serve to create new inequities?
Through POSER, PIH allotted funds to build or rent a new house in Mirebalais for Janel and his mother and provide them with a living stipend. But the process of performing a needs assessment and psychosocial evaluation, using this information to determine how best to help them, finding an appropriate location for them to live, and negotiating with the local community would take time. And it wasn’t just logistics that made the process slow. When I checked in with the HUM mental health team about their progress, a colleague wrote back apologizing for the delay. The bus their team used to travel between PIH/ZL sites had been attacked at gunpoint along its usual route. Nobody had been hurt, but after terrorizing the staff, the attackers had broken the bus’s windows and set it on fire. The psychologist who wrote to me about this event concluded her email:
It was Scary!
People are traumatized!
It is a Shame for the image of our Country!
We have enough problems—we did not need those things. The worst is that we can’t even guarantee It won’t happen again and again.
Sorry!
It was going to be a while before we’d have a safe situation for Janel and his mother.
Père Eddy moved things along nonetheless. He wrote to us:
We need to move from words to actions. The list of needs is long, but we don’t have to do everything at once. Let’s start with the basic need of food support.
He and Michelle secured funding from HUM for an allowance of five thousand Haitian gourdes (about seventy-eight dollars) per month for Janel and his mother. Père Eddy wrote to me:
A small victory, a first step. But the fight for Janel’s life must continue!
Seventy-eight dollars per month seemed like an insultingly low sum to me. Could they really survive on this? But after one of the HUM social workers delivered the first payment to them, he wrote to us:
This manna arrived just in time. The joy expressed by Janel’s mother cannot be described in words. However, the larger problems are not yet taken care of. We must continue in our efforts to bring better conditions to this patient’s life.
Just over $2.50 per day was next to nothing. But compared to zero, it was an infinite improvement for Janel and his mother.
* * *
“W se Doktè Aaron?” asked a young man as I was leaving HUM for the day. (“Are you Dr. Aaron?”)
I didn’t recognize him. He looked like he was in his early thirties and was well dressed in a loose, checkered button-down shirt that was untucked and hung over pressed dark jeans. The first few buttons of his shirt were left open, revealing a gold chain. He had thin-rimmed glasses, and his hair was shaved to the scalp, giving his head a reflective shine in the midday sun. Did I know him? I wasn’t sure.
He introduced himself as Ricardo and said he was working with the HUM mental health team on Janel’s case. I recognized his name from emails, but I hadn’t met him before. He was the person who had found Janel’s new house, negotiated a good price with the landlord, and brought Janel and his mom their monthly stipend.
I shook his hand and thanked him for all he had done for Janel. He said he was going to do a needs assessment for Janel and his mother and follow up with me by email about what still had to be purchased for their new home. He asked if I could help him move it forward, and I assured him I would.