If you can't, teach (or yammer on interminably on the internet)

Probably no surprise to anyone who knows anything about starting an NGO (or any sort of corporation not-for-profit or for-), my (our) new project has stagnated, probably not to be revived. I still feel mostly convinced that it was based on a good idea, it was supposed to operate in communities that have a lot of potential and energy that could otherwise be wasted, and was addressing actual needs with programs that were highly appropriate to the context. If anyone out there has a few thousand dollars and a lot of organizing energy laying around, and wants to invest it in slum communities in India, please let me know. Thoughts about that organization, and the one before it that I left in the spring, still hurt—a lot—but I can mostly avoid thinking of them. Lucky me.

Me, I’ve mostly retreated from the whole “program” thing, into a world of research and theories and proposals. Doing social science (of the RCT variety) in one of the biggest cities in India, it’s a relief to mostly write grants, write surveys, clean data, run do-files, and still go out at night with a group of friends (who are not my co-workers). Might be less of a relief in the next months as I’m managing survey and fieldwork teams 7am-9pm, 7 days a week, but honestly, and I’m a terrible person to both my current and previous job for saying this, it’s really great to be doing something I don’t actually care about.

It’s not that I don’t care at all. Intellectually, I really couldn’t be that much more engaged (at least, without someone forcing me to read 400 pages of theory each week in addition to my other work). I work with people who are pretty much universally agreed to be the biggest geniuses/rockstars/“experts” in their field, all of my coworkers (who, blessedly, each have their own projects so there is no toe-stepping) are mini-geniuses destined for great things, and our regular meets and drinking are deliciously nerdy. My project is full of interesting challenges, and I’ve found out I really like writing surveys (or, at least the first draft. The 8th draft after two months and one day before the launch is a little less fun), asking interesting questions, teasing out relationships and pathways and connections.

I got a motorcycle. I have friends, a stable place to live, time to myself, plenty to do with friends and visitors, I live in one of the world’s great cities, and I even have some time to travel (and a salary which is below the poverty line, but way more than I really need to get by). I’m content, maybe even happy.

Probably time to move on. I’ve gotten my applications for grad school (MPH) done, and this year I’m promising myself not to freak out a month before school starts, and actually attend (yeah I’ve got and will have even more loans, but who doesn’t). I do fantasize about my job literally being to sit and read and think and talk and write all day, and I’m going to really enjoy this degree. I’ve even made tentative plans to get a PhD afterwards, and hopefully never again need to leave school, but we’ll see how much I like it in two years. No need to rush into these kinds of things.

I’m in a very different place than I was three years ago, but at least I’m still in the same field. I think I’ve made more than my share of mistakes for a 25-year-old (thank god I don’t have kids, or I probably would have seriously fucked up. better to get it out of my system now), but I’m figuring out where I’m happy, and where I’m useful. The world probably doesn’t need another American fieldworker drinking in hotels in tropical cities, but hopefully there’s some room for one more clueless academic.

it's ok, just blog it out (health plan edition)

having issues coming up with this program plan for a new ngo...hopefully writing some notes here (and eliciting comments?) will help me put my mind in order.

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in case you don't know me or know exactly what i've been up to, after working for about two years in pune, india, studying quite a bit of public health stuff (mostly independently) and reading too much, i'm working with a friend/former colleague to create an ngo in pune, bombay, kamshet (sorta...it's near lonavala, in the mountains halway from bombay to pune) and possibly eventually up in gujarat to work with members of criminal tribes (mostly the waghris, though expanding from there) who, for a number of specific historical circumstances, are extremely well excluded from pretty much any government assistance. not necessarily the poorest of the poorest of the poor, but definitely up there, and since we see this as primarily a case of lack of access, hopefully this can be worked out mostly in one generation.

so, in broad strokes the organization will be concentrated on education, health and community organizing (not necessarily in that order). education will be a serious bolstering of the education of kids attending govt schools (4+ hours of trilingual tutoring each day, pre-school, etc.), health is working out really basic stuff (childhood diseases, diabetes, pre-natal care, etc.) with a special concentration on tb and mdrtb (something i saw a disturbing increase of over the spring of 2009)--seriously working with the govt rntcp, identifying possibly resistant cases in the surrounding slum community, testing and treating with as little delay as possible. might end up opening a lab (or three) for this in the future depending on cost/benefit analysis, and definitely doing a lot of the DO half of DOTS, which the govt basically ignores. community organizing, though probably not the best or definitive term for this, will be concerned with supporting self-help groups, microfinance and getting legal documentation/representation for members of the community (caste certificates, ration cards, possibly unionizing to protect their employment from the slum "development" plans, etc.).

while i recognize it's kinda a dumb thing to open up a new "development" shop, especially in this economic climate (uh, or just in general), all of us working directly on it (one american, one brit, two indians from pune) have significant ties to the community which we hope to serve, speak the three languages which are most necessary (english, hindi and marathi, and we're working on gujarati), have good relationships with similar orgs in the general area (actually working to set up a health centre/program for an allied organization, hence the thing in kamshet), and generally recognize that this is a community which has specific needs (as they've enunciated them to us) which aren't being met by anyone in the area. so...yeah, there's my little defensive paragraph.

me personally, i'm going to be bouncing back and forth from washington to london to pune/bombay the first year, attending grad school in london, fundraising like a madman in the us and developing plans with local staff/community members to be implemented in my absence (in the areas we know best, namely pune), and then work on expansion to bombay upon moving somewhat permanently to india july 2010.

so there's that, now what will this health program be?

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first order of business in health is to deal with primary care, specifically for kids and pregnant women, in an organized and systematic way. best way to do that would be to work through community health workers (CHWs) who could help them access mostly the government services that would be needed--pre-natal care, reminding about vaccination schedules, going with them to different hospitals/ngo offices to get services, and advocating on their behalf to doctors (perhaps one of the biggest barriers to healthcare in the area, ugh). they would be caseworkers, service coordinators, instructors and very basic healthcare providers--giving first-aid, recognizing when more care is needed, and generally checking in on people as needed.

we'll have a part-time doctor at our centre(s) (in pune to start, expanding in 6 months-1 year to bombay, then 2-3 years up to gujarat, somewhat north of ahmedebad, but i cant remember the name of the town right now) who will provide somewhat specialized primary care (prescribing antibiotics only when needed, checking in with diabetics, etc) and medical guidance for CHWs and other staff (when something comes up that nobody recognizes, where to go for specialized care, etc.).

we'll start work on health education in the realm of nutrition--promoting good foods (drumstick, yeah), talking about equal food distribution within a family, talking about practices that should be minimized (tobacco use, lots of chai especially adolescents who are kinda nuts in this area, eating crappy food as opposed to eating cheaper, more nutritious food at home--this will also have a lot to do with women's groups/women's empowerment, and will work closely with the organizing program in this area), that kind of thing. to expand from there to substance use/abuse, sexual health (female AND male), community clean-up campaigns during the monsoon to combat malaria and diarrheal diseases, all that. a lot of that is going to be fairly indistinguishable from the community organizing programs, but that's kinda ok in my mind.

tb will be sorta a strange-looking outgrowth on all this community stuff, since it doesn't make sense fighting tb in one small (~400 people) community and ignoring the entire surrounding slum. so we'll be working with the local govt tb clinic, which blatantly doesnt do the DO part of DOTS at all, to do real proper follow-up of (all? just some? this is starting to sound too ambitious) tb patients in the area, hopefully preventing a lot of acquired resistance and fighting (on our own dime, unfortunately) primary resistance, since the govt blatantly denies its existence in the rntcp plan. that's going to mean a LOT of foot work, carried out primarily by specialized CHWs from around the slum, and lots of culture/sensitivity testing and sometimes providing a lot of expensive medicine.

the point of all the expansion is to work continuously with the waghri community across the main areas in which they live (they're semi-nomadic), so that treatment and education don't have to stop when they go to bombay or the village for two months. we'll have a lot of coordination between CHWs across all sites (who will most likely know each other anyways, since this is a very closely-related community), and managers at all centres, to ensure that nobody falls through the cracks like they have in the past.

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alright, that's my super-short description of the program in my mind, hopefully now i can write that in a more detailed and even somewhat professional way in the actual plan. i havent included any specific targets or evaluation rubrics, which definitely needs to happen. what else am i missing? what is just plain dumb? thanks for your help in advance.

What happens when you can't get your ideas straight

So, it was recently brought to my attention that the philosophical foundation that I’ve based my health program on is not actually one, but two separate ideas. So now I’m all “Fuck, what do I do?”, and meanwhile we’ve got patients/clients/community members/partners (what do I call them? That’s a whole separate can of worms) who continue to place demands on us, and I’m not entirely sure of what I’m doing.

So, to start with, the idea that I thought my program was founded upon was the idea that health (including healthcare, medical treatment, health education and, broadly, life itself) is not a commodity to be bought and sold, but rather is a human right. Therefore, access to high quality healthcare should be universal and have no regard for income, class, language, race, etc. And in the beginning it was good, and it all seemed so simple.

But then I found myself writing project descriptions—for grants, for the website, for newsletters, for individual donors. And I didn’t notice at the time, but I subtly shifted my writing and speech to the language of access. I wanted to increase access to medications, to medical treatment, to prevention programs, to concerned and genuinely compassionate doctors. Beyond generally believing that this was a good model, that this could significantly improve health outcomes, I think I did this as a way to water down my ideas about universal healthcare, as a way to make them palatable to donors and generally to the people whose support I need in order to reasonably (and by reasonably, I mean, “within my small organization’s budget”) make a difference in the lives of the people I work for.

Selling out, watering down my philosophy, I know. I’m not terribly proud that I would adjust something so basic as the reason that I do the work that I do so as to have more access to money, but hell, at least I’m honest about that.

Anyways, so, the thing is that generally these two ideas work fairly well together. The community we work for is marginalized, without access to health care, and in many ways shows a higher prevalence of a number of diseases because of this lack of access. Our record has generally shown that by increasing access to prompt healthcare, we’ve been able to (for example) reduce child mortality to zero (since mid-2007, where previously most women tell stories about at least one or two children dying) and successfully treat all new cases of tuberculosis, slowing the spread of the disease and decreasing the severity and length of morbidity. So far so good.

Our work has focused mainly on providing intensive follow-up, ensuring doctors and health institutions treat our patients respectfully and fairly, despite linguistic and socioeconomic markers which clearly label our patients as the migrant poor, and providing any necessary treatment. Notice, the first two go along with the “access” focus, while the last generally fits better with the “universal healthcare” aspect of my philosophy.

Where these ideas stop getting along is when we move to the borders of our target population, and begin working with the less poor, usually from other neighboring communities. Along these margins, access to healthcare is spotty, rather than completely absent. People will come to you with reports showing regular blood sugar testing over the past five years, with a few notable gaps, and ask for free testing and treatment for their diabetes.

There are two things you can do here. First, if you were strictly following the dogma that healthcare should be absolutely universal and free, regardless of ability or inability to pay, you would of course provide free testing and treatment. However, if you were looking at this from the perspective of providing universal access, you would see that these people already have some access, the way to ensure steadier access is to provide limited assistance, perhaps for testing or treatment, so that the family, with a reduced burden, will be able to consistently provide the rest.

So that’s what I did on Wednesday. Sounds eminently practical, and in an imperfect world of finite resources, where I work for a small NGO instead of running the world government, it’s probably the best I can do. I can’t, at the moment, handle another full-on diabetic patient (with testing, follow-up, home visits, doctor visits, and paperwork tracking prescriptions) and my organization’s modest budget will be quickly tapped out if we get in the business of giving free medicine to everyone who can in fact afford to buy it themselves. But it always feels shitty, turning someone away because they earn too much money.

I could now go on for a while about a few more things this brings to mind: first, whether we are, by giving medicine and healthcare away for free (but paying for it ourselves) are in fact making a firm stand about the universal necessity of free healthcare, or if we’re just buying into a system that we can’t see a way out of; second, whether, in the context of limited resources, if paying for a prescription of insulin, for example, should fall on the patient, if they are able to pay, or should always fall to the party better able to pay (in which case, it would almost always be the NGO); and finally, if it even makes sense to speak of the “context of limited resources” in a world where most infectious diseases and many chronic diseases would be easily managed by a relatively small redistribution of the world’s wealth—in which case, it might make more sense, then, to stop this “on the ground” work altogether and work only on the side of forcing or coercing a greater redistribution of resources.

But those are questions for another day. As always, I need to get back to the Sisyphean task of improving health, and making do with what we’ve got.