Anise and the Question of Compliance
May 23, 2014
I just finished reading a really good book by Paul Farmer. I think that most people I know will have heard of him. He’s widely admired as a doctor who joined Partners in Health in Haiti in the ‘80s, and helped to turn it into the international powerhouse it has become. Though Partners in Health has collaborated closely with Fonkoze for many years, and though I’ve worked extensively with their wonderful staff since I joined the CLM program, I’ve never met him. Hope I do some day.
The book I read is called Infections and Inequalities. Farmer writes about AIDS, HIV, and Tuberculosis, and how epidemics of such diseases are shaped by a larger global epidemic of inequality. Effective therapies become ever more available thanks to advances in medical science, but are often inaccessible to the poor, who are the diseases’ main victims. Farmer points out that, especially in the case of tuberculosis, the poverty of its treatment in poor environments is a threat to everyone, poor and wealthy alike. Half-treated or poorly treated cases of simple tuberculosis can turn into drug-resistant ones given time, and those drug-resistant cases can then become outbreaks that spread beyond the poor communities they emerge in.
But the way an insufficient attention to tuberculosis among the poor can threaten some “us”, too, isn’t really his point. He wants us to think more seriously about the reasons that are offered for not providing expensive medication to sick people who are poor. He writes of claims that are made about the cost effectiveness of expensive drug regimes in environments of intense poverty. Some say that we should focus instead on broader development initiatives, that we are better off treating poverty itself rather than the particular problems it exacerbates. We could combat a lot of poverty with the money that the most advanced drugs for HIV require.
Farmer will have none of such talk. He argues that it’s a false choice. An example he offers to display its falsity involves the lack of access to expensive second-line TB drugs in Peru at a time when the Peruvian government was spending hundreds of millions of dollars on fighter jets and even more to service its debt to banks in wealthy nations.
He also talks about those who cite evidence of poor compliance with drug regimens in some poor settings. It is argued that, again especially in the case of TB, providing expensive second-line drugs to TB patients is downright dangerous since they don’t follow though with the instructions they receive and, so, are especially likely to nurture increasingly resistant strains of the disease. Farmer asks us to look carefully at what this poor compliance consists of, and he points to studies that show that high-quality treatment made convenient and affordable doesn’t run into compliance problems.
“Compliance” is one way we could label an issue that we face all the time. It can be hard to convince our members to change their habitual behaviors in ways that we know will serve them well. We fight hard to get our members to use the water filters we give them and to keep their surroundings clean and to give up their habitual bare footedness. These all represent simple decisions they could make that would be certain to improve their lives. But they are all decisions that are hard to get many of our members to make. Many fail to comply with the advice we provide.
But, in line with Farmer’s argument, we should ask ourselves whether framing the question by talking about compliance is really constructive. Anise is only one example, but she’s the one who happens to be on my mind these days. She’s a single mother of two from Niva, a large area immediately south of downtown Mirebalais that stretches along both the national highway and a major local road that leads all the way to downtown Saut d’Eau. Her first boy’s father abandoned them both to their fate long ago, but Genson, the father of her second boy, who was born shortly after Anise joined our program, still lives close by and supports Anise and their son Mackenson as much as he can, even though he and Anise are no longer together.
Genson regularly sends her such money as he is able to support their child. That should, I suppose, go without saying. After all, Mackenson is his child, too. But it doesn’t go without saying in Haiti. Our program is filled with children whose fathers take no responsibility for them. Like the father of Anise’s first child. But Genson isn’t like that. He’s committed to Mackenson. The problem is that Anise’s family uses any money that Genson gives her to by food for them all: her father, her brother, her sister-in-law, and their kids.
We brought Anise and Mackenson yesterday to a mobile health clinic we organized in Venis, a remoter area farther to the south. It wasn’t really near her home, but we told her she’d need to come because Mackenson has been sick. As soon as Wilfaut, our driver, dropped off Dr. Luc, who ran the clinic, in Venis, he drove back to Niva to collect Anise and a couple of others who needed attention. We knew there was no chance she’d be able to get to Venis by herself, just as she had been unable to get Mackenson to the hospital in Mirebalais. When they arrived, Dr. Luc didn’t really examine either of them. He just to a quick look at the obviously sick infant, and told us to get him to the emergency room immediately. So Wilfaut sped off with Anise, Nerlande, and Mackenson.
As they were walking out the door, someone asked Anise very pointedly how she could have allowed her baby to deteriorate to such a degree, and she burst into tears. As weak as she is, she had to hold herself up herself by clutching a support post as she cried. Nerlande grabbed one of her arms – Anise was carrying Mackenson on the other – and she led her to the truck.
For a couple of weeks, Anise’s case manager, Nerlande, had been trying to pressure Anise to bring her baby to the hospital. The baby had been sick: weak and with persistent diarrhea. But Anise never went. Going to the hospital would not be a simple matter for her. She herself has been unwell since before Mackenson was born. She can’t really eat, and we don’t really know why, so she’s weak. Carrying her baby for a day is more than she can manage. She’d need a neighbor’s help, and she hadn’t been able to recruit anyone to give her a hand. Nerlande had been providing instructions, but Anise had not complied.
Working with Anise has been hard for Nerlande, and she’s already had to be creative. Early after childbirth, we discovered that Anise was too weak to nurse him. She was producing no milk to speak of. We got her to see a doctor. I had taken her to the hospital a couple of times myself on the back of my motorcycle, but she wasn’t getting better. We also started buying formula to reinforce the inadequate nutrition that Anise could provide her boy. The milk initially worked wonders. Mackenson quickly grew both in size and in liveliness. All this while Anise, herself, failed to improve.
Nerlande came to believe that part of Anise’s problem is her separation from the baby’s dad. Genson is a poor, hardworking man willing to take responsibility for them both and even to help with her older child, who is not his. But when a conflict erupted between him and the rest of Anise’s family, particularly her brother, she chose to side with the latter. She let her brother and father drive Genson from their home, which is on her father’s land. And no amount of peacemaking – at least to this point – has been able to bring them back together.
We can’t pressure her to rejoin Genson, even if we suspect it would be the best thing for her. She and I last spoke in the children’s ward in the PIH hospital in Mirebalais. She sat, cradling her child, explaining she was happy to see that the swelling in his feet had gone down some. The ward nurse had just expressed herself to me less optimistically. The hospital staff cannot yet speak of progress, she explained, because though the baby had already been with them for a couple of days his diarrhea continues.
But as Anise spoke with me she explained the problem. Genson argues with her too much, and she can’t stand the stress. She needs to feel at peace. At the same time, her parents have each separately assured her that they’ll never speak to her again if she gets back together with Genson. Apparently, his family looks down on hers, and they’ve made secret of that fact. They hold his family’s attitude against him.
In any case, Anise has a lot to manage and has very few resources – financial, personal, social, or otherwise – to manage it with. Staring soberly at the barriers before her, one cannot reasonably frame the fact that she does not follow directions in terms of compliance.
There is some hope, though it seems born almost of despair. In her first three days at the hospital with Macken, Genson visit a couple of time, bringing money each time to ensure that she can find something to eat. The hospital itself will provide food for her baby while he is there. Her own family came on once, and it was only to ask her for money, saying that they had nothing to feed her older boy.
None of this is lost on Anise. Sitting in the chair in the hospital, wakeful in her fear for her little boy’s life, she’s been turning her situation over in her mind. We don’t want her to feel forced to return to a man she is not attached to, but we do want her to feel able to make a decision that she feels is best for herself and her boys. I’m hoping that, when they leave the hospital, she will decide to sit down with Nerlande and Genson and try to work things out. We may have to meet with the two families as well.
But this is all just to say that the context within which Anise is stuck making her choices is very far from innocent. Her poverty, her poor health, and her family situation all enter into a calculus that frames her live choices for her long before she can think of making them. Until we can help her neutralize some of the aversive factors that shape her reality, we cannot reasonably speak of her “compliance” with our well-intentioned advice or of “choices” that she makes at all.