Gay Men Are Flunking The Test

Also published on Bilerico.com

Yesterday, I posted an article about  a press release by the Journal Of The American Medical Association:

“…all adult patients, regardless of CD4 cell count, should be offered antiretroviral therapy (ART), according to an article in the July 25 issue of JAMA, a theme issue on HIV/AIDS. Other new recommendations include changes in therapeutic options and modifications in the timing and choice of ART for patients with an opportunistic illness such as tuberculosis.”

This follows the “treatment as prevention” model, based on the scientific research that people with HIV on antiretroviral therapy- with an undetectable viral load- are 96% less likely to pass on the virus.
us-statistics-2.jpgThis seems to be very good news. If you have HIV, you should find out early, get on meds and you’ll have a better chance of living a longer healthier life.

So what’s the problem? The problem is twofold:

  1. People at risk aren’t being tested: 20-25% of all HIV-infected people don’t know they have it.
  2. People at risk are still not being tested: Gay and Bisexual men of all races are the most severely affected by HIV

That’s not a typo- they’re basically the same reason, but there’s a difference. Any guesses?

Hint: It’s probably why most gay men won’t even read this article.

20-25% of all people with HIV don’t know they have it. Why not?

Here’s my take: Denial is one of the strongest mechanisms in the human psyche. It is fed by lack of information, by avoidance and by a strong desire for an alternative reality. If you’ve had unprotected sex, you’ve probably engaged in the process of denial. You’ve probably downplayed the risk, probably lied to yourself a little. You may have even gone over and over it in your mind, seizing every opportunity to deny the possibility of trouble.

“He looked okay”; “He didn’t seem sick”; “He pulled out”; “He would have told me if he had HIV”, etc, etc, and etc.

Well, we all know where that goes…. As individuals, we’re not facing facts. If we were, we’d be getting tested.

us-statistics-1.jpgGay and Bi men of all races are the most severely affected by HIV. Of course. We know that. Don’t we?

Again, denial applies. Gay and Bi men aren’t talking about HIV anymore. Our friends aren’t dying, so there’s no reason to be concerned. People with HIV aren’t out- aren’t well-known in our communities. Why? I was once told “You don’t need to harp about HIV all the time- it’s not that big of a deal.” Except that it is.

HIV has complicated my life in ways many people can’t believe. I am on catastrophic health insurance through the state- almost three times as expensive as my partner’s insurance. I get assistance for my meds- which cost about $25,000 a year- but (crazily), I can’t make more than $30,300 and still qualify for the program. I have joint pain, sleep issues, battles with depression, fatigue and a body that is aging at several times the normal rate- most probably due to inflammation- the hallmark of HIV disease. And yet, if I talk about this to friends or family, I’m seen as a whiner or someone trying unnecessarily to worry people I care about. It’s the “shut up- at least you’re not dying” defense. I know several HIV+ people who haven’t told anyone of their status, mostly because it’s “uncomfortable”.

No shit.

As a community, we’re not facing facts. If we were, we’d be talking to our friends about the importance of maintaining our health. We’d be talking about the hard reality of HIV.

But we’re not. Denial still holds sway, both individually and as a community. We’re lying to ourselves- we’re lying to each other- and infection rates stay the same.

We have a chance to change this trend. But only if everyone with HIV starts treatment, gets into care. This recommendation of the AMA may help with that. But it’s not up to doctors, nurses and social workers, it’s up to us.

We’re being tested, both as individuals and as a community. The problem is, we’re flunking.

Because we’re not showing up.

(Images source)

Janus, Chaz, Hillary, The Military, Barack, Science And HIV

Français : Demi-statère de Rome, tête de Janus...

Image via Wikipedia

(Also Published on LGBTQNation)
Janus was the Roman God of Thresholds, of transition, of beginnings and ending. He is often depicted with two faces, one for looking forward and one for looking back. January, the beginning month of the new year is named for Janus, and so, it’s natural that humans take this time to look back- and look forward- at the approach of the New Year.

As I take a look back, I’m very grateful for some amazing things that have happened this year in the U.S.- things that I never thought would happen in my lifetime- including:

All good stuff.

But what I am finding amazing is the conspicuous absence or light mentions in the LGBT media about the dramatic advances in HIV treatment and prevention in the “best of” roundups this year. A year when there have arguably been more advances in treatment, prevention and scientific breakthroughs than in any other year in the 30 since AIDS was discovered. A year when top government officials committed time, money and policy to ending this disease. A year when Science magazine called the HPTN 052 Study the scientific breakthrough of the year.

It’s puzzling.

Are we getting complacent about HIV? Are we in denial about the very real danger it still poses to our community? Do people understand that having HIV is difficult- creating financial, medical, emotional and social problems that can be devastating for people, families and communities?

It seems so.

I am, like I said, grateful for all the things listed above. I am grateful for Chaz and trans representation. I am grateful for relationship rcognition. I am grateful for advances in employment nondiscrimination. I am grateful that my government is taking LGBT rights seriously. I am especially grateful that the elected administration of this land is treating HIV like it should be treated- as a disease, a viral infection- and not as some Divine Punishment inflicted on the sexually and socially repugnant dregs of society. That is a big deal.

In fact it’s huge.

So why did we miss it?

CDC Analysis: 4 out of 10 HIV-Diagnosed Not In Care

An analysis of epidemiological data by the Centers for Disease Control has arrived at a startling conclusion: as many as 4 out of 10 persons diagnosed with HIV do not remain in care.

Despite all the medical evidence which advocates early HIV treatment for a healthy life, people are still not accessing care. The specific reasons are unclear, but the National HIV Treatment Guidelines are very clear: Persons with HIV are to be tested for Viral Load and CD4 counts ever 3-4 months, unless they are considered “virus-suppressed” (usually with an undetectable viral load and normal CD4 count with no medication changes over a period of time), then it is every 6-12 months.

So, what’s happening?

In surveillance data from 13 regions, only 59% of people recently diagnosed with HIV had had a test for viral load or CD4-positive T-cell count within the previous year, according to Irene Hall, PhD, head of the CDC’s HIV incidence and case surveillance branch.

The finding implies that the remaining 41% are not under a physician’s continuing care, Hall said in a teleconference during the 2011 National HIV Prevention Conference in Atlanta.

The two tests are a “marker for being in care,” Hall told MedPage Today.

Maybe it’s time to start talking seriously about barriers to proper care, including discrimination, poverty, cultural issues and race.

At a time when we know treatment is prevention, it’s important that the members of our communities who are HIV infected receive the care they need.

I’m wondering if it’s about support. Many of the people in my HIV+ support groups help each other with their health care- talking honestly about issues, sharing resources- even giving each other rides to doc or lab visits. They stay on their meds, talk realistically about their health, exercise, pay closer attention to nutrition and reducing stress. They do it because they have people they can speak to honestly about their disease- people who know firsthand what it’s like. And, for the most part, they’re having incredible, fulfilling lives.

In my experience, it’s the people who are trying to deal with HIV on their own who don’t do so well.

Depression and fear can play an enormous part in healthcare apathy- and it’s a well-documented fact that fear and depression are alleviated by concern and compassion from family and friends- and involvement with others who share similar circumstances.

So, in the interest of trying to understand this better, I have a couple of questions:

Do you know anyone (maybe it’s you) with HIV who is not getting care for their disease? What can be done to get them into care?

I’d like to follow up with your responses- so feel free to contact me at Dgsma@hotmail.com if you are uncomfortable leaving a response in the thread.