Tag Archives: stigma

Paying Attention to Hepatitis

Today is World Hepatitis Day!

I have recently learned a lot about viral hepatitis and I’m just starting to understand how dynamic and complex a disease (multiple diseases, really) it is. In the United States, Hepatitis B (HBV) and Hepatitis C (HCV) are two distinct diseases, far more prevalent than can even be accurately counted, with intersecting social histories. Abroad, HBV, HCV and Hepatitis A (HAV) have reached epidemic proportions in several regions. (To be clear HAV is present in the U.S., but has a relatively low incidence rate.)

While each hepatitis has its own specific disease profile, the populations affected by hepatitis are having distinctive experiences with the virus too. Still in the U.S…. For HBV we have a vaccine and (theoretically) the opportunity to eradicate this strand – HBV is primarily being spread through sexual contact (so for example there are higher rates in the “men who sleep with men” (MSM) population). HCV on the other hand is both acute and chronic, and currently there is no treatment which can “cure” chronic hepatitis C (no vaccine). The population most affected by chronic HCV are baby boomers, many of whom are completely unaware of their status until they develop cirrhosis of the liver and liver cancer (it is thought that many of these individuals contracted hepatitis C during the 60s and 70s). New HCV infections are highly prevalent among injection drug users (IDUs) – a fringe population very hard to understand, reach out to, and treat.

There can often be HIV/hepatitis co-infection, of both HBV and HCV, which can complicate treatment. Like with HIV in the 80s and 90s, hepatitis comes with stigmas, a lack of understanding from both health care professionals and patients, and a series of cultural factors which makes it an unknown.

Asian Americans, African Americans, those incarcerated, the undocumented, immigrants from countries such as Egypt and China, pregnant women, baby boomers, and IDUs all have specific needs and circumstances (goldmine for medical anthropologists?!). With infection rates far greater than those of HIV(in the U.S.) and research funding about a 10th of what HIV research gets, its seems about time we start paying some attention to hepatitis.

Scaling Without Judgment

This past weekend, I had the pleasure of taking in a pristine March day in the Swiss Alps. Surrounded by skiers and snowboarders, there was an aura of good health. I don’t know if it was the sunshine and smiling faces or the men and women of all ages continually moving, but it was definitely a rarefied community lacking in judgment – everyone was participating in an accepted, healthy, activity (it should be noted, that these observations were made as I enjoyed myself from the comfort of a snow tube). Returning to the U.S., I was already thinking about the perceptions, stigmas, and prejudices we all have about each others health and lifestyle choices – the NYTimes was thinking about this too, and published an essay Monday discussing the unpleasant, tricky, and frustrating stigmas and prejudices which, more than ever, surround individuals both medicine and society deem as obese. Peers, employers, strangers, and even doctors – whether they know it or not – present their negative perceptions of overweight individuals, creating a schism between thin people and fat people.

Yes, there is a level of personal responsibility required in all decisions made about our bodies. However, these decisions are made within a cultural structure which is often out of our control. Assuming all overweight individuals are “awkward, unattractive, ugly, and unlikely to comply with treatment” is hurtful, disheartening, and does not help. Stigma and compliance issues are not unique to obesity in developed countries and are important factors in HIV/AIDS and TB, women and child health, and disability care.

This blog has discussed the impact social networks have on health – social networks include our society as a whole. Overweight individuals are avoiding the judgments of our larger social network by not seeking out doctors and medical support. This trend will add further challenges in our struggle to curb obesity. Judgment and prejudice, unfortunately, are part of human nature. For those of us working to improve the health and well-being of those around the globe we must work especially hard to think without judgment and to understand stigmas in the broader context. There are tremendously high mountains to scale to improve our health and while we do not and can not work and live in communities free from judgment, we can do our part to promote good health, without judging ourselves.

*Image is author’s own: view from Mt. Titlus, Switzerland.

Pass it On

Last night, I witnessed the infectious way good news can spread within a network of friends – improving everyone’s well-being. The theory that social networks and connections affect individuals and populations is not necessarily new, but has begun to make it big in discussions of health. It is being used to examine many aspects of health from eating habits to infectious disease. As social beings, humans are easily influenced and transformed by those around them. Our networks literally allow ideas, actions, habits, and beliefs to spread, in the same way a pathogen moves from one organism to another. Two areas where this “networking” theory could provide amazing breakthroughs are obesity and AIDS.

In their book Connected, Nicholas Christakis and James Fowler explore how social networks shape our lives. One of their arguments is that these social connections can literally shape our lives by affecting what we eat, when we eat, how we eat, how we exercise, and our views on body size and image. These types of influences can have both positive and negative impacts on our bodies. Christakis gave a TED Talk earlier this month on the spread of obesity through networks, and Fowler has made an appearance on the Colbert Report explaining how even our connections through social networking sites affect our health. Most simply, if those you are connected to are obese, you are more likely to be obese. If those around you exercise regularly, you are more likely to exercise. And if your friends have body image ideals that are unhealthy, you are more apt to as well. We all know obesity is a hot topic in the United States, Mrs. Obama’s determined goal to put an end to childhood obesity has been in the news as of late. Changing the way we eat and approach food will have to come as a cultural shift, and shifts of this magnitude come from infecting a network with a new “habitus” of food.

The infectious character of HIV/AIDS does not come only in the form of bodily fluids passed from one individual to another, but in the social environments in which it spreads. Yes, effective prevention programs and stronger health infrastructures on the continent of Africa and in countries like Haiti will help to stop the disease. The environments in which AIDS spreads, however, are complex social networks with deep cultural and ecologic roots. In a post earlier this week, I discussed the strong stigmas in many African societies surrounding AIDS, stigmas which in many cases are perpetuating its spread. By effectively shifting the thought process of several individuals – in a way that blends with the local fabric of life and understanding – whole social networks can begin to change their beliefs and behaviors, as well as the structural barriers which force individuals to choose certain actions over others. Organizations such as the Organic Health Response (in Kenya) and The Global Micro-Clinic Project (in several developing countries) are working to improve health outcomes through social solidarity – stopping the spread of infection at the social level.

The strength of social networks is evident even at the Olympics. As these games come to an end, we have witnessed the communal admiration, triumph, and pride one person and one event can create. This theory, the impact social networks have on our health, can and should be applied to everything from maternal mortality (birthing practices, nutrition, and cultural capital) to health care reform (how we pay for it and who gets coverage). Good news can spread among friends in the blink of an eye and the strength of our very human, and very powerful, social networks can affect our individual and collective well-being without us even noticing…an idea we should spread!

*Image is author’s own.

Ending AIDS Forever?

AIDS could effectively be eradicated within the next decade according to a number of public health professionals. Dr. Brian Williams of the South African Centre for Epidemiological Modeling and Analysis (Sacema), giving a talk at the American Association of the Advancement of Science (AAAS) annual meeting over the weekend, stated his belief that universal testing and therapy (through ART regiments) in high-risk regions, could end the disease within five years.

A Sunday Times article nicely summed-up the plan: that universal testing and therapy, while initially quite costly, would cut transmission from person to person as well as slowing the spread of other diseases which are co-infection concerns, such as TB. By starting individuals on ART early, within the first year of infection, their chances of infecting others would be significantly lessened, and the disease would die out. Currently, only about 12% of HIV-positive individuals worldwide take ART drugs.

The most effective ways for this type of program to work would be to ensure annual testing, access to drugs, and taking ARTs correctly. This is where “compliance” comes into play. Being compliant means to be excessively obedient. Compliance is often cited as a reason for why certain treatment programs are unsuccessful – patients being non compliant. Quoting Dr. Williams: “Compliance in Africa is actually much better than in developed countries, because in the latter HIV tends to affect intravenous drug users and other marginalised groups, whereas the victims in Africa are just poor.” Is Dr. Williams implying that “the poor” are, for whatever reason, more easily compliant? Either way, trials in several African countries on this type of detection and treatment protocol are set to begin this year.

Seen as one of the high-risk regions for AIDS, Africa has without a doubt felt the burden of HIV/AIDS heavier than anywhere else on earth. Despite their exposure and burden, there remain strong stigmas towards the disease and those infected – keeping people from getting tested, learning about the disease, and seeking out what treatments may be available to them. These stigmas will not disappear overnight if universal treatment is presented. Additionally, there are many local and international organizations working very hard on innovative and socially tangible means for combating AIDS and stigmas. How would these existing structures fit with a plan for universal therapy? Would they too find themselves needing to be “compliant”?

The financial and policy needs behind such a plan are mind-boggling, and would require an extreme degree of coordination. Eradicating AIDS within the next decade is a goal we should all strive for, but through collaboration and not compliance alone. As Sir Mark Walport of the Wellcome Trust simply stated, we have “no way of knowing how acceptable or effective such a program would be.”

Interestingly, the Sunday Times also ran an article on the growing evidence that long-term ART regiments, or the extended life they provide, may be causing dementia and pre-mature aging. If this is the case, universal therapy could bring an entirely new set of health concerns to already strained communities, health systems, and regions.