Thursday, July 26, 2007

HIV meets diabetes meets HIV

In the early 1990s, I never believed it would happen. But in mid-February 2007, I heard a cardiologist talking about the cardiovascular effects of HIV, who then put his talk in context by casually saying, “Even so, I’d choose to have HIV over having diabetes.” The doctors-in-training listening nodded in agreement. They probably didn’t remember that people used to talk about comparing HIV to diabetes like it was an impossible dream.

In 1992, Bob Rafsky, a person with AIDS and a member of the activist group ACT UP, wrote in the New York Times, “It's always possible we'll win. The drug, or drugs, that will turn AIDS into a chronic illness like diabetes will finally be discovered.” But, he wrote, “it's not likely, at least not in time for me.” Rafsky died the next year, in 1993.

Just three years later, starting in 1996, the kinds of drugs Rafsky had hoped for arrived in wealthy countries like the United States, used in combinations of medicines that together became more than the sum of their parts. Along with other improvements in HIV care, that allowed people to live with HIV for much longer periods of time than before.

Even back in 1996 and 1997, people were starting to say that living with HIV could finally be like living with diabetes, a difficult but manageable chronic disease. This didn't mean that it would be easy.

With modern medical strategies, the most common and serious effects of diabetes aren’t short term crises of sugar levels, but the effects of long-term damage to blood vessels: problems like stroke, heart attacks, kidney failure, blindness, nerve problems, and foot and leg infections that can sometimes require amputation.

Avoiding these problems over the long-term requires constant vigilance. In fact, as HIV medications become easier and simpler to take, sticking to them is often less complicated than sticking to diabetes regimens.

Especially early on, most Americans with HIV got the virus either from unprotected gay sex or sharing needles, which is part of how HIV got the stigma that it still has today. By contrast, Type I diabetes often comes in childhood, as a result of an autoimmune problem; no one blames people with Type I diabetes for their disease.

But stigma does influence how society responds to the much more common kind of diabetes, called Type II diabetes. Whether people get Type II diabetes has a lot to do with genetics. But higher amounts of body fat are associated with higher risk for Type II diabetes. That’s political poison for mobilizing a response to Type II diabetes, because Americans tend to misunderstand why people gain weight, think of fat as a kind of moral shame, and vastly underestimate the difficulty of losing weight and keeping it off. And so society can distance itself from Type II diabetes, by blaming the disease on the people who have it.

When AIDS was a more lethal disease in the US than it is now, it inspired intense fear and stigma and discrimination. In the late 1980s and early 1990s, people with AIDS and their allies, including activists like Bob Rafsky, began speaking against that fear and demanding the solidarity of others. They won the support of many; red ribbons became de rigeur for celebrities for a while. That kind of activism (both the angry kind and the syrupy Oscar ceremony kind) helped bring the day that HIV infection became more like diabetes.

Now, as Type II diabetes becomes more common, and also stigmatized for its increasingly well-publicized association with fat, the new challenge might be for Type II diabetes to become more like HIV—in which people with the disease and their allies stand up to demand that the society get over its prejudices, and start paying more attention.

19 comments:

Sara said...

Totally from love.

emily wright said...

Maybe we should start saying "people with unhealthy amounts of fat [UHAF]. No moral accusations, but an acknowledgement that there is such a thing as too much fat. Then we can start looking at why there is so much corn syrup and why it's so cheap, why people don't feel safe walking around their neighborhoods, why they work so many hours they don't have time to exercise, and many other contributors to being a person with UHAF.

Moondance said...

Fascinating. My mom and brother were recently dignosed with Type II, and neither of them have any idea where it comes from. (My whole family has "unhealthy amounts of fat.") I'll bet they know more about how to prevent the spread of HIV than how to ward off diabetes. Number of times my brother has had unprotected sex is far less than number of jelly donuts consumed around the breakfast table!

My concern is that de-stigmatizing obesity will not only get more attention to research and prevention, but will excuse people from making the lifestyle choices (not knowing what's in the food they eat, and remaining sedentary) that contributes to being overweight and unhealthy.

It's great that the battle against HIV is in such good shape in the US. If I were in a developing contry, I think HIV would still scare me more than Type II diabetes, as you alluded in the post. I hope we make progress there too.

Joe Wright said...

The New England Journal just published an article relevant to this question. It uses data from a long-running cohort study to show that obesity clusters in social networks; and that neither geography (which should be a rough surrogate for socioeconomic, political and cultural factors, especially in segregated New England) nor genetics was as big a predictor of obesity as was a mutual friend who was obese.

One buried finding in this paper--whose statistical methods are mostly beyond me--is that this effect was not clear among women who were friends with each other.

There are many possible explanations for this data. One is that lack of stigma around obesity and unhealthy behaviors spread from friend to friend (we can call that the "go ahead, have another" theory); another might be that stigma actually creates social networks. That this effect is seen more clearly among men than among women suggests to me the possibility that jocks and nerds stay in their respective social groupings for the rest of their lives, whereas the factors that lead to women's obesity may be more personal and less social. (Perhaps, for instance, women's social groupings and activities are much less clearly organized around physical activity and lack thereof.)

I also think there is a strong possibility that obesity is becoming one of those things, like smoking, that is stigmatized to the point that it may define social networks (rather than spread among already existing networks).

The important thing for this post, however, is that as far as I know, there is no evidence that making people feel that fat is ugly/repulsive/disgusting/etc.--i.e., the real mechanisms of current social stigma--is an effective means of getting people to become skinny.

Getting people to lose weight and eat healthy--even if they stay obese--substantially decreases diabetes risk. So stigmatizing fat in itself is not a solution to diabetes. Understanding how people can take care of themselves better no matter what they look like is probably a more realistic and effective solution to the part of diabetes that is related to behavior. In other words, the message shouldn't be, "You're fat, you disgust me" (the current way of things, which will have the effect of causing these clustered self-reinforcing networks of large people), but instead, "I love you, and I'm worried that you might get diabetes if you gain weight next year the way you did this year."

Given that this effect is strongest among men, it also might be important to find ways that nerdy guys can get out and exercise without remembering all the times they felt persecuted by jocky guys.

Fair disclosure: though no one who knows me ever believes it, my body mass index wavers between 29 and 31--in other words, just under and over the definition of "obesity" used in this study and many others. And I was definitely a nerd in high school. On the other hand, I'm just back from a morning of swimming.

Anonymous said...

Obesity has many causes - some attributable to personal choices, many not. That the cost of a healthy, low calorie, low fat diet is beyond reach for many low and moderate income families usually gets short shrift. Happy Meals at McD's are far cheaper than fruits and vegetables, chicken, fish and other low fat sources of protein. But many are not.

The rise in obesity accounts for 30% of the rise in health care spending over the past two decades. And we all share the price in higher premiums regardless of our BMI. It would be far cheaper - not to mention kinder - to link a public health campaign with financial help to low and moderate income families than pay the cost of inaction down the road.

Losing weight is not like stopping smoking. The first adds to every day's shopping bill. The second adds money to the household budget. It's cruel to educate people about the health risks of being overweight without providing the resources for reducing those risks.

Barbara Roop

Anonymous said...

Hi, great post, and comment.

As for the New England Study, sure, emphasizing stigma is a poor means of motivating health -- on an individual level. I'm curious about the study's implication that reevaluating obesity as a public health concern might change the way it is addressed as a clinical issue. Would it?

Joe Wright said...

One of the most fascinating things about the New England Journal paper was the accompanying editorial--which was more about the genetics of obesity than the social influence on it! (the idea was that the problem can be understood in terms of networks at the molecular, cellular and social levels, etc, etc)

As far as I understand the paper's methods, I think it fails to narrow in on its most convincing findings (i.e., about gender). But, it does make a couple of interesting points.

1. Though it's clear that a lot of this story is about poverty and access (as Emily Wright and Barbara Roop point out), the fact that social networks were more influential than geography in this analysis is probably a good argument for culture and social norms being as important as economics (since neighbors tend to share income levels, especially in New England).

2. If social norms are important, then some of what clinicians should be doing is thinking about how to change social norms. One example: campaigns against college drinking that said, "college drinking is bad" made college drinking seem cool. Campaigns that said, "most college students don't spend a lot of time getting drunk", and quoted survey data, made college binge drinkers and budding alcoholics start wondering about how they'd ended up as outliers.

This approach can be done by saying, "most college students drink less than you might think" without having to say "and if you drink a lot, you're a jerk." I think that's important. If you stigmatize an activity you almost create the social group that's going to start organizing itself around the pursuit of that activity.

So clinically maybe we can start saying, "This is what guys like you are doing that is successful."

One important thing to realize is that if we are to be honest, success has to be measured in extremely modest terms. Losing weight and keeping it off is incredibly difficult. So, setting realistic goals, and celebrating people when they go from BMI of 38 to BMI of 34 (rather than emphasizing, 34 is still too high) might be an important step.

I also would really like there to be more support groups for people who are trying to lose weight--including groups that aren't attached to expensive programs like Weight Watchers.

But there's something else really important to notice about this set of posts--it's about fat, not about diabetes.

Which I think illustrates my original point quite well. A conversation about diabetes inevitably becomes a conversation about fat. That's why I think people with diabetes might need to start reframing the social meaning of their condition. It's not about fat--it's about insulin resistance. (Which can be related to fat, but is not the same thing.)

Toni Brayer MD said...

What a provocative post! I never thought about comparing HIV with Diabetes together as chronic diseases. I was in training and early practice when the HIV epidemic was ravaging patients and we had no effective treatments. It was a 100% death sentence. The prejudice and stigma were unbelievable and even parents would reject their ill sons. In some African countries it hasn't changed much and continues to decimate families. Education and science have changed the face of AIDs and, hopefully, education and science will be effective for preventing diabetes also. Emily Wright (above) pegged it...the cause is multifaceted and our culture hasn't yet tackled the the root causes of obesity.

Ron Hudson said...

As one who is fighting stigma of HIV/AIDS and also who has HIV/AIDS *AND* diabetes, I can tell you that diabetes has been, so far at least, the most difficult aspect of my disease to control. It has made me aware how little control on my life HIV actually has had compared to the constant struggle of finding appropriate food and maintaining good blood glucose levels. I can not say that I have noticed any stigma with diabetes, though. I am not obese, so perhaps that is why.

One aspect of surviving HIV/AIDS for 22 years, only to become diabetic as a result of HAART, that I find upsetting is the psychological effect of feeling overwhelmed with too many rules. I have to take my HIV meds on schedule, without fail, with food or without food, but without fail, everyday. Sometimes, all I want to do is reward myself with a huge piece of chocolate cake and ice cream, but if I do, my diabetes is brought into play. After a short time, it becomes very emotionally difficult to find the will to take all of my health needs into account. If I slip, it is with my food intake,not my HIV meds. As a result, I have kidney damage, neuropathy, worsening vision and any other number of issues relating to diabetes.

My doc has described my health like a balloon, that when squeezed at one end blows out at the other. Often my HIV and diabetes are at odds with each other in this way and I feel like I am the balloon.

I am not sure this is making a lot of sense, but perhaps all I am saying is that managing two illnesses is exponentially more difficult than managing just one, and managing any illness with stigma is bad as it is. The only thing I have any choice about is the stigma, so I refuse to give it power in my life.

Joe Wright said...

Ron, thanks so much for posting. It really can be such a struggle to deal with diabetes, because of that everyday quality of the choices. Not just taking your meds on time, but making choices about food every time you eat. Food is an incredible force--absolutely necessary and yet our emotional responses and yearnings for it go so beyond the necessity for sustenance.

For instance, I have been losing weight recently, and feeling very proud of myself about it. Tonight, I was very sad and frustrated that I didn't get out of the hospital until 11, and Dr Ms Hemodynamics was at her parents' house. I went out and got myself a carnitas burrito and then had some ice cream for dessert. What was THAT all about? A total "I deserve a treat" moment--the nature of which I hope to write more about soon.

Joe Wright said...

...and, Ron, I am going to think more about what you've said about stigma. I think it's right that on an individual social level saying "I have diabetes" doesn't quite get the same reaction from people as "I have HIV." (Nor does it get the same reaction from doctors who I think are often bored by diabetes and afraid of HIV. Perhaps too glib a statement but maybe there's a little bit of truth in it.)

On a political level, though, there's some reason that such a growing epidemic of such a tough disease is still not inspiring a big political and social response. There must be many reasons for that, which I feel like I am still just trying to figure out. It feels like our cultural attitudes about fat are part of that political absence.

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Chris said...

You poor dear man... It's been almost a month. Is someone making sure you're fed and your lunch is packed and the dishes and laundry are done? Or are you doing this by your self?

When my brother-in-law started his residency he had my sister taking pretty brilliant care of their home life and he STILL started having seizures. (No future in surgery for that by, which is fine. He'll make way better money as an anesthesiologist.)

Take CARE of yourself.

Eric Wenthe said...

This is both good news for HIV patients and a wake-up call for diabetes patients.

But isn't a condition like lung cancer a better analogy to type II diabetes? (In terms of prevention, not treatment.)

For most people, type II diabetes can be prevented or managed through diet and exercise. The new challenge might be for type II diabetes to become more like lung cancer -- in which people with the disease fully understand that the choices they make about what they put in their bodies (over time) is, in many cases, the cause of their sickness.

One sexual encounter (for example) can result in someone contracting HIV, whereas one cigarette won't cause lung cancer and one Big Mac won't cause diabetes.

While HIV can be contracted in an instant, both lung cancer and type II diabetes are typically contracted over a period of years, and usually through actions that one can change (which isn't to say that change is easy).

And change is made harder in that it requires more education about the things that are put into our food (like hormoes, and esp. HFCS) that were not there 50+ years ago (although 50+ years ago doctors would often tell people that "marbled" meats were the healthiest).

I am not suggesting that stigmas are appropriate, or even useful, only that we should not give people false impressions about their conditions in an eagerness to remove such stigmas.

In this I would agree with Moondance's assessment about lifestyle choices.

Eric Wenthe said...

I forgot to mention that for the U.S. I assume (but please correct me if I am wrong) the impact on overall health-care costs from type II diabetes is far greater than the impact from HIV, if only in terms of the number of patients.

(And perhaps for other reasons as well.)

In any attempt to revise our health-care system, this type of thing needs to be taken into account, though I would have absolutely no idea how to do that. I do believe, however, that the only current health care systems that could potentially and realistically be adapted and "merged" with ours are not those in Canada or France, but rather the system in Australia or the one in Germany. If I were researching this, I would look to how those countries deal with HIV, lung cancer and type II diabetes, as well as lifestyle issues.

(As an aside: having contracted a nasty tropical bug in northern Australia, I eventually crawled into an urgent-care ward at a hospital in Sydney. I was told--sheepishly!--that because I was not a citizen I would have to pay in full for my visit and any prescriptions. Twenty minutes later I was leaving, with a 10-pack of some super antibiotic, and was asked--again sheepishly--for $35, total, which at the time was about $19 U.S. I paid with a smile.)

Joe Wright said...

Chris--I'm surviving. Ms Dr Hemodynamics is pretty essential to that survival, because she has a fair amount of time right now. That will reverse itself later and hopefully I'll be able to make up for my current absence from every part of my life except the hospital.

Eric--I would never ask people to not make healthy choices--but from the most pragmatic point of view, I don't think stigma is an effective way of getting people to change their eating habits.

More soon.

j

Eric Wenthe said...

There's a very interesting article this morning in the NYT on diabetes:

One page printable version
or
With pictures, four pages

NYT HEALTH | August 20, 2007
Six Killers | Diabetes: Looking Past Blood Sugar to Survive With Diabetes
By GINA KOLATA

Largely because of a misunderstanding of the proper treatment, most diabetes patients are not doing what they should to protect themselves.

In reference to the previous post, I didn't suggest stigmatizing people -- and most of us don't have control over that anyway, it's a social meme we can individually only chip away at, and I am glad you are one of the "chippers" -- only that a more useful comparison might be to lung cancer, which, like type II diabetes, has a more long-term, behavioral association with it (obviously, smoking; with type II diabetes, diet and exercise) as opposed to (in many cases) HIV.

And the lay-person might take what the cardiologist said to mean diabetes is "worse" than HIV, in a way that could increase its stigma (by comparing it to HIV at all, and unfavorably).

This is something anyone can absorb from living in the U.S. But as someone whose uncle had HIV, whose father has type II diabetes (which he refused to accept for years, calling himself "pre-pre-diabetic") and whose mother has cancer, I've experienced both the diseases and the social aspects of them first-hand.

Society has made great strides in de-stigmatizing HIV since the early 1980s (no thanks to Ronald Reagan, although Nancy did come through towards the end of his presidency, though I believe only in dealing with children with HIV and AIDS).

But there is still a stigma with HIV, more so than with lung cancer, so I just thought a comparison to that disease in terms of the behavioral causes (lifestyle over long periods) and the general acceptance of it would serve to better educate (or even cause concern in) people about diabetes and also reduce the level or possibility of stigma for those who are battling diabetes.

Eric Wenthe said...

I wanted to include a portion of that article, because I think this is so important -- and because I did not know it before, even with a family member who has type 2 diabetes:

...But in focusing entirely on blood sugar, Mr. Smith ended up neglecting the most important treatment for saving lives — lowering the cholesterol level. That protects against heart disease, which eventually kills nearly everyone with diabetes.

He also was missing a second treatment that protects diabetes patients from heart attacks — controlling blood pressure. Mr. Smith assumed everything would be taken care of if he could just lower his blood sugar level.

Blood sugar control is important in diabetes, specialists say. It can help prevent dreaded complications like blindness, amputations and kidney failure. But controlling blood sugar is not enough.

Nearly 73,000 Americans die from diabetes annually, more than from any disease except heart disease, cancer, stroke and pulmonary disease.

Yet, largely because of a misunderstanding of the proper treatment, most patients are not doing even close to what they should to protect themselves. In fact, according to the federal Centers for Disease Control and Prevention, just 7 percent are getting all the treatments they need...

Joe Wright said...

Eric, thanks so much for posting that article. I think the comparison between lung cancer and diabetes is an interesting one. Some lung cancer funding advocacy campaigns have been emphasizing the people who get lung cancer who didn't smoke--to make people more sympathetic to the disease. This question of blame/responsibility/behavior ends up being a huge part of healthcare in all kinds of ways.

But the article you post also brings out another thing about what many people with HIV in the US and elsewhere have managed to do (at least, some of them)--which is, make sure that they exchanged information about health with each other, and also kept their doctors accountable. These are the kinds of advantages that formal or semi-formal political and social organizing can bring to people with a disease--and they're the kinds of advantages that most people with HIV don't have. Why not is a whole different question--i.e., why people with some kinds of diseases organize politically and others don't. But this is one other example, besides stigma, of how people with diabetes might benefit from organizing with each other to respond to the disease and society's response to it.

I just think if doctors knew that 1/10 or even 1/20 of their patients with diabetes were going to be super informed activists on a mission who were not going to tolerate anything but excellent care, the quality of care would likely increase for the 9/10 or even the 19/20.

j