Instead of Black History Month (which I love) I’m going to kick off something new–Black Future Month, focussed on the future health of African-Americans. As part of Black Future Month here at Doc Gurley (the only place it exists, so far), together we’re going to launch the 2008 Black Future Month Campaign. Read on for the low-down on an expensive, life-saving tax-funded entity that most people don’t know exists (and therefore can’t demand for themselves and their community):
When it comes to getting informed, there are usually three parts of the process–first, what are we talking about, second, why it’s important, and third, what’s the hold-up? After that, we’ll move straight into what you can do about it.
What is it? 1) Insider info here: Almost every single bit of useful knowledge in healthcare since the 1970′s comes from one kind of study–we’re talking the large-group, long-term, detailed study of people willing to hang with the researchers and answer a million questions and get tracked down over and over, even twenty years later. These studies are named after the people in them–there’s the Doctors’ study, the Nurses’ study, even the Nuns’ study. The most famous is the Framingham study, set in a semi-rural community in Massachusetts where everyone in town was enrolled–and it’s still going on, generations later. Almost everything we know about health comes from a handful of these studies. Does high blood pressure really cause heart attacks?–yup, comes from these. Does cholesterol increase your risk of stroke? (yup). Do estrogens increase your risk of endometrial cancer? (yup). Over and over and over again. While a small study might ask a question, the final answer is almost always found in one of these large, expensive, time-consuming, long-term studies. So why am I discussing this during Black Future Month? Oh well, let’s think…hmm…white people in that study…white people in this study…wow, look at that, only white people again…oh, wait–no, scratch that, white people again…Well, what do you know? White people all over. Here’s my big question: where the hell is the Harlem Health study? The Watts study? The NAACP study?
Why is it important? 2) For (literally) thirty years, researchers have documented disease rates and outcomes that are worse among African Americans. Over and over, all we do is describe the same thing. Isn’t it time we moved on to why? and, most importantly, how to fix it? That’s what you would get with a Harlem Health study. In a detailed, long-term prospective study, you check the long-term-follow-up of an entire population, keeping track of everything everyone eats and does. Sure, there is relatively small percentage of African Americans in existing large studies. But what’s missing is a study of a group that is predominantly (95%) African Americans. Why is that important? Wouldn’t that be just a kind of “reverse discrimination.” Well, no. See, when you set up a population-based study, you need a lot of people to follow for a long time, in exhausting detail, in order to compare them to each other to get at the truth. That’s impossible when one group is a tiny minority. And, when you choose a population to study, you get to set the priorities for what’s learned. The priorities and diseases studied would be different for an almost exclusively African American study. A Harlem Health study’s priorities might be breast cancer (which afflicts African American women more), prostate cancer (ditto), vitamin D deficiency (check), low-birth weight babies/infant mortality (check), asthma (check), and difficult-to-control high blood pressure in young adults (check). There are many more to choose from–because African Americans in our society suffer more disease and worse disease. There are also diseases/syndromes that almost exclusively affect African Americans, things like sickle-cell, sarcoidosis and even uterine fibroids (way more common among African American women). There’s no way these questions are ever going to get answered from a Framingham study of almost all white people–it’s not even possible.
What’s the hold-up? 3) We could spend months talking about the reasons why this work is still not being done, even decades later. One clear reason is that, if you took all health epidemiology researchers nationwide, with grants over $1,00,000 (that’s the minimum kind of investment this thing takes), and lined them up on a stage (there ain’t that many), I doubt if there would be very many people of color in the group (if any). When the people designing (and running) a study are almost all from one group, it may not strike anyone as odd that almost all the people IN the study are from the same group. To get this kind of study to occur requires trust and long-term commitment between researchers and subjects, which has to be cultivated with the community being studied. The nasty circular logic is–you can’t send white people in to study African-Americans (shudder), and you don’t have that many people of color researchers. Lay people tend to not know these studies even exist, much less how valuable/expensive they are. So there’s no demand for this kind of investment in African-Americans’ health future–therefore, nothing gets done. But how do you ask for something that you didn’t know existed? Which is where our Black Future Month Campaign begins!
4) Sticking up for fairness and the rights of people you love: why and how to. If you’re not African-American and you got this far, just to wonder why the heck you should care about this issue, here’s the bottom line. Honey, if you think these studies won’t benefit you personally because you’re not African-American, you’re just dead wrong. Anyone who thinks you can learn about a disease without studying the whole range of human expression, is the kind of person who thinks that the air they breathe is somehow different from the air the person next to them breathes. All of us are affected by this lack of knowledge. Do white people get fibroids (yes), do white people get sarcoidosis (yes), do researchers get valuable treatment information from extreme diseases, like prostate cancer in shockingly young African-American men (yes). To change this gap in our health knowledge, just like with the heart-transplant example (where it helps to know a path forward, and be in it for the long haul), there are key steps necessary to making a long-term African American health study occur. First, people in the community have to be involved, both in recruiting a group of people willing to participate, and in setting priorities. Second, it’s time to go straight to the top, politically, and point out the existing financial discrimination of African American health when it comes to expensive, long-term, detailed epidemiology studies.
5) Be persistent: The First Black Future Month Campaign Begins! Rah! Rah!–here are your tasks, if you choose to accept them! First, contact any opinion-leaders you know (work those six-degrees of separation). Contact them, pass the word, set up a mega-email chain–send people to this website page for an explanation of what we’re talking about. Ask anyone you know to write an article, or do a segment on the news. In other words, spread the word. Let’s make sure everyone knows–otherwise, how can you ask for what you don’t know exists? Second, once you know about the issue, if you too, like me, want a long-term study for Black Future Health, go to the permanent pages on the Doc Gurley website and you’ll see one titled 2008 Black Future Month Campaign. In it you’ll find a sample letter and some useful addresses. Copy and paste the letter into a printed document and mail it (stamped letters work better than email), or email it (not as effective as letters, but much better than nothing!). Send the letters to a) senators and representatives, b) the head of the National Institutes for Health, c) the head of the Centers for Disease Control and Prevention, and d) any media people or opinion leaders you know.
6) Take the long view: We’re in this for the long haul. Setting up this kind of study and getting results takes time, if it’s done right. Getting funding will take persistence and dedication.The sooner we start, the sooner we get results.
Let’s charge into the future–a healthier, fairer future for us all!