How the focus on 'personal responsibility' undermines public health
By Elizabeth Weill-Greenberg
The ads are ubiquitous: "Knowing is Beautiful," "We All Have AIDS," and other empty platitudes. The airbrushed faces urge us to get tested – as if the onus is solely on us and our reticence to get tested is our own fear or ignorance or apathy.
A couple weeks ago I tried to get an HIV test at New York City's clinic in downtown Manhattan. I was going to be in the neighborhood for a meeting and thought it would be a good idea. I'd last been tested about a year ago. When I called the clinic at 8:30 am on my way to the Grove Street PATH Station I was told I had to call 1-800-TALK-HIV to make an appointment. So I called that number twice but the call didn't go through. I got on the PATH and when I got off in New York I tried again. They didn't open until 9 am. So I waited and tried again at 9. When I asked to schedule an appointment that day I was told there are no same day appointments.
Huh?
The woman told me I could walk in and if I got there early enough I could probably get tested and get my results on the same day – but there was no guarantee. (Most testing facilities use a rapid test that delivers results in about 20 minutes.)
I had no intention of spending the rest of my day sitting in a waiting room with the possibility that at the end of the day I might not even get tested. I hung up, went to my meeting and left the city.
This certainly isn't the first time trying to get tested wasn't so "beautiful" an experience. I've never gone to a doctor who brought up having an AIDS test the same way a gynecologist always conducts a pap test. This puts the patient in the uncomfortable position of having to raise the issue herself. And I admit my shyness has often won out and I leave with the question still stuck on the tip of my tongue.
It's nerve wracking enough – especially for someone like myself whose default disposition is anxious – to make the decision to get an AIDS test. Getting tested should be as simple and as welcoming as possible.
Yet it seems to be a trend in healthcare to take a crisis, like the AIDS epidemic or being uninsured, and turn it into an issue of personal responsibility. Most recently Massachusetts lawmakers demonstrated this thinking by enacting legislation to force residents to buy health insurance by July 1, 2007. Those people who are uninsured by that date can be fined up to $1000. Republican Governor Mitt Romney vetoed a provision that fined employers who refused to buy health insurance for their workers. (Democrats have promised to override his veto.)
The Boston Globe reported that state officials found that most low-income residents will be required to spend $30 to $140 a month on health coverage. While the government will subsidize residents who earn between 100 and 300 percent of the poverty level, those who make more than about $29,400 for an individual and $60,012 for a family of four are on their own, the Globe reported. (6/4/06)
New Jersey, however, is actually taking productive – not punitive – steps to address the insurance crisis. Earlier this year NJ legislators recognized this insurance crisis and extended the age limit for young people to stay on their parents' health coverage to 30. Previously young people were kicked off their parents' insurance when they were about 23 years old. The bill's sponsor, Assembly member Neil Cohen (D-District 20), said that his legislation may help as many as 200,000 young New Jerseyans.
Judgments in Manhattan
Myths of personal responsibility and so-called morality increasingly color healthcare issues. One Jersey City resident talked to me about the judgments he faced once at the downtown New York City clinic for an HIV test. (He has asked to remain anonymous to protect his privacy.) He wrote to me that:
"I am not one of those people who ignores or dreads getting tested for HIV. In fact, I often have the impulse to get tested even when there's no good reason to, when I haven't been at risk since my last test. I don't know why I am so compulsive about HIV testing, but I have a sneaking suspicion that having seen TV coverage of Ryan White's funeral, where Judith Light was in attendance, may have something to do with it ("Who's the Boss?" was a very important part of my world in 1990.)
When I lived in New Brunswick, it was easy to get tested; there was a clinic down the street from me offering free anonymous (as opposed to confidential) walk-in testing during convenient hours. When I moved to New York, I found myself unprepared for the inscrutable mysteries of finding an anonymous test location and securing an appointment.
Less prepared still was I for the incompetence and lack of professionalism of some of the staff I have since encountered at the downtown clinic. One HIV counselor there assured me that unprotected anal sex poses little or no risk of transmission to the top. Another questioned me very aggressively about my sexual history, asking me things like: 'How many sexual partners have you had since your last test?' and 'Where do you meet these guys?'
When I told him I didn't feel comfortable sharing such details with him, and protested that the quantity and location of my sexual encounters had little bearing on my level of risk, he became rude and defensive, and even called me a 'serial tester' who apparently didn't think it was necessary to take
precautions against risk. This last comment I believe was a reference to the fact that I'd been tested six months earlier, and was coming back to close the window and verify the last result. A third woman, sadly the best of the bunch, sat facing her computer screen during our entire interaction, and didn't make eye contact with me once, not even when she was giving me my results.
As I've said, it's not difficult to get me in for an HIV test. But given my experiences at the clinic, I will likely go elsewhere next time. And if I were someone who was at all reluctant to get tested, having an experience like mine might mean there is no next time, no matter how many subway ads I see every day.
Yes, knowing is beautiful. And so is making tests easily available, as well as hiring and adequately training sensitive and competent staff to administer."
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