C.A.R.E. Knowledge Blog

Silence = Stigma

Stigma has been a big issue in the support groups here at CARE. Or rather, self-stigmatizing has kept people from attending the group. 

For most of the people attending the newly diagnosed group, they've been meeting people in a social arena that uses avoidance of people who are positive who disclose their status. Terms like "clean" and "disease-free" are put out with the hope that by avoiding people who know they are postive, they will avoid the virus. One result of this is that they seldom have any friends who are positive and out about their status--plantonic or otherwise. 

Unfortunately, the main drivers of the epidemic are people who don't know that they're positive. Often someone tests negative, and even after a few more encounters, they're still posting that they tested negative two, four, or six months ago. And as far as they know, they are negative--based on their last test result. 

So when the viral apartheid strategy fails, they're sequestered in an HIV closet of sorts. 

If disclosure is to be the norm, more positive people will need to be open about their status, negative people will need to be more accepting of their positive brothers, sisters, lovers, and friends, and public health messages will need to adress these important issues. 

An Ordinary Thing

In today's New York Times, the paper report on the CDC's report that the number of new HIV infections are remaining stable; they also report an alarming increase in the number of new infections among young black gay men. For the past ten years, data has shown that the number of new infections have remained relatively stable. There's an attempt to spin the data into something more optimistic, pointing out that the number of new infections were close to 150,000 a year at their peak. 

Perhaps the lack of explicit safer sex messages and education that targets the highest risk groups can be seen as at least a partial contributor to the government's inability to gain an upper hand with the pandemic. And in a future with even more restricted funding, we can expect education and prevention messages to continue to decline. 

Another contributor may be complacency. As the NYT reports:

Philip Alcabes, a public health epidemiologist at Hunter College in Manhattan, noted that 50,000 is close to the number of Americans who die in road accidents each year — almost 40,000 — “and in some ways, we consider dying on the road an ordinary thing.” (my emphasis)

“So it’s not clear that prevention is a failure,” he argued. “The average adult’s chances of encountering H.I.V. infection — 0.02 percent a year — are rather low. It’s not reasonable to expect that a sexually transmitted virus will disappear in America, or anywhere else...”

Unlike driving, which is a fairly ubiquitous activity, HIV is concentrated in risk groups. Here in Long Beach--like many other urban centers--the HIV prevalence can be as high as 20 to 25 percent of gay and bisexual men, a far cry from 0.02 percent. 

AIDS Drugs Assistance Program Waiting List Tops 8,000

Thirteen states now have waiting lists for HIV medications, with the total number of people who need medications, can't afford them, don't have private insurance, and can't access the medications public and community agencies that provide care to those who have no other options. This list comes from the National Alliance of State and Territorial AIDS Directors and is current as of May 2011. In addition, other states have begun cost containment strategies by eliminating medications from their drug formulary, lowering the income level for those eligible, creating expenditure caps, and stopping reimbursement for lab work.

Ironically, this comes at a time when the study, HTPN052 was stopped early because of overwhelming evidence showing that starting HIV-positive persons on medication early greatly reduces the rate of transmission. So the consequence of fewer positive people receiving treatment will be more cases of HIV that will need treatment, and longer waiting lists.