“We want to go beyond ‘Who did you have sex with?’ to ‘Who do you hang out with?’” - Dr. Thomas Frieden
, New York City Health Commissioner
One day last year, I checked in with the social worker at the clinic where I receive HIV care to get some paperwork out of the way. Part of her job as my social worker is to make sure I'm not isolated, since people with AIDS are at risk for social isolation. I mentioned to her that I had gone to the excellent New York Gay Film Festival with my friend Robert, and we'd had a great time at the afterparty. A strange thing happened the next time I visited my primary care physician. The doctor asked me, "who is Robert?" At first I didn't know what she was talking about. "You went to the movies with Robert. Who is Robert?" Oh, now I got it. The social worker, doing her job, mentioned the film festival in her notes; my doctor had read those notes. "Oh, Robert is a good friend. I've known him twenty years." "I thought he was your partner and you hadn't told me about him." Oh, now I really
got it. This was about contact tracing. Anything I say to the social worker can be reported to the Department of Health.
Obviously, from that point on, that doctor could no longer function as my doctor. And I wouldn't say anything to the social worker either.
So this doctor thinks its her job to keep track of who I go to the movies with, and yet still thinks she can function as my doctor? I'd never seen a physician act like this before. I didn't know it at the time, but today I know the doctor was acting on guidance from the Department of Health. You really have to wonder about a Health Commissioner who can't see how bad an idea this is. It's just like one of those characters from Star Trek who are scientific geniuses but are completely baffled by human behavior.
The kicker is this: the next time I saw the doctor, she asked me, "is there anything you want to confide in me?" No, darling, that train has left the station. At least if I get picked up by the police, they are required to give me my Miranda warnings. This is an element of Dr. Frieden's idea of 'modernized' AIDS care - anything I say to my doctor can be used against me.
Dr. Frieden calls for the elimination of written consent as part of routine HIV testing, in order to test more people. Routine HIV testing is necessary because people stop having unsafe sex when they find out they are positive. "Positive people act responsibly," says the doctor. I'm glad to hear the Commissioner say that, but it is a convenient change in tune from what we heard when contact tracing was pushed through the legislature. Back then, we were 'AIDS Monsters' out there deliberately infecting everyone we could find. When the DOH asks for quasi-mandatory testing, we're so responsible. When they want to expand contact tracing, we're serial infectors: “In addition, the policy of offering partner notification
only at the time of diagnosis ignores the continuing high-risk sexual behavior of many HIV-positive persons.” And on the subject of credibility, let's not forget the recent supervirus fiasco; we can now see Frieden was just lobbying for his radical changes in AIDS policy.
I certainly hope that Dr. Frieden's predictions on the link between risk behavior and HIV testing come true, but I wouldn't play the stock market based on the commissioner's fortune-telling (I'll come back to this stock market analogy). Frieden's argument ignores the fact that he is proposing to radically change the law for HIV testing. How positives behave under the existing rules may not illuminate how positives behave under his proposed changes. Without pre-test counseling and written consent, many of Frieden's new positives will be manipulated into testing before they are psychologically ready; I'd expect their behavior to be quite different from today's positives. If Dr. Frieden were an investment advisor and made a public offering on such questionable reasoning, I'd close my checkbook and run out of the room.
Dr. Frieden's proposal to routinize HIV testing may trigger increased risk-taking by negatives. A major problem in prevention today is the false idea that HIV is 'no big deal' because it is temporarily treatable; Dr. Frieden would have doctors reinforce that dangerous misperception. I remember in 1984, right after HIV was first identified, a doctor on TV declaring that it was now 'just a matter of time before we find a cure.' I took that as medical authority that I didn't have to worry about AIDS. If a doctor had ever suggested to me, even implicitly, that HIV was just 'routine', I would have interpreted that as medical evidence that I didn't need to fear AIDS, and would have increased my risk behavior.
Despite his spectacular scientific intellect, Dr. Frieden shows an alarming misunderstanding of the psychology of AIDS. How else could he ask for broad Kommisar-style powers as Health Commissioner and not realize how that would cause patients to distrust doctors, clinics and HIV service programs? How else could he use data obtained under the existing testing rules to predict behavior in a revolutionized testing environment? How else could he imagine that today's medical treatments for AIDS have eliminated HIV stigma? Anyone who has been a victim of stigma knows that stigma is not a function of fact.continued . . .
Testing Upheaval Part II
In my life, I've encountered several physicians--I'd say a significant minority of doctors--who, with all respect to their highly valued scientific talents, just didn't understand the psychology of AIDS. Without the protections of written consent, those doctors would have killed me by coercing me to test for HIV before I was ready, subjecting me to megadoses of stress and crippling my ability to make the lifestyle changes recommended by GMHC and community activists--changes that allowed me to survive into the protease era. The doctors just didn't get it. While I thank Heaven for the protease breakthrough, I remain wary when clinically brilliant people, like Dr. Frieden, venture out of the laboratory armed only with statistics, onto which they can imprint any agenda, just like a Rorsach inkblot.
Dr. Frieden calls for routine testing
, which is controversial, rather than universal testing
under Article 27-F, which would be the right policy. According to the Commissioner, Article 27-F creates a barrier to universal testing and must be abolished.
This mystical 'barrier' amounts to nothing more than the financial interests of a significant number of physicians who don't want to be burdened by written consent. (Many doctors never respected written consent even during the pre-protease era when, even Dr. Frieden acknowledges, there was very little medical benefit from testing.) Obviously, Dr. Frieden won't present his arguments in the concrete and more accurate terms of medical profit; for political reasons, he talks instead of this vague and mystical 'barrier' to care. (I'm an old Star Trek fan, so when people talk to me about barriers, I think of the energy barrier at the edge of the galaxy that prevents intergalactic space travel.) 'Barrier' is a current buzzword in business and tech circles. Dr. Frieden is using a buzzword to mask the profit issue; he's just dressing a pig in an evening dress and taking it out to dinner. His proposal for 'routine testing', as opposed to non-controversial 'universal testing', places the financial interests of hospitals over the living interests of patients with HIV. And Dr. Frieden does this presumptively. He is not basing his proposal on a cost-benefit analysis because he is oblivious to the benefits of written consent and pre-test counseling. In his analysis of pre-test counseling, the costs to doctors automatically take priority over the benefits to patients.
Dr. Frieden sees consent, confidentiality and privacy only as general, abstract matters of medical ethics. For example, he believes that since as health commissioner he already has the power to contact a patient's spouse under contact tracing, he should now have the power to contact the patient's doctor. That equation only makes sense in ethical terms; otherwise, it is a non-sequitur. Intruding into my personal life raises very different issues from intruding into my doctor-patient relationship. (To be honest, I'm more honest with my doctor than with my boyfriend, because I have to be.) Note that Dr. Frieden is explicitly sliding down the 'slippery slope', basing a new expansion of powers on a past expanion of power, despite the failure of contract tracing as a prevention tool: infection rates continue to increase among heterosexual women, the demographic contact tracing was supposed to protect.
I see written consent not just as an ethical issue, but as a screening tool designed to screen for patients who are at risk for serious psychological injury from a premature positive HIV test result. We don't need to talk about suicide as the worst case scenario, or the very likely anxiety and depression. The relevant dangers are:
1) Triggering a substance relapse;
2) Triggering a 'flight-or-fight' response to medical care.
I can personally give many examples of my own 'flight-or-fight response' triggered by the fear of premature HIV testing.
--In 1986, I was working for a financial company as a freelancer. The company offered me a permanent job, which would have included health benefits. After accepting the position provisionally, I turned down the job at the last moment for one reason: I thought health insurance would require an HIV test.
--There is a fictional patient in Bellevue Hospital's records named "Joe _________", the alias I used to get medical care at Bellevue, but preserve an 'identity escape route' if I was ever tested for HIV at the clinic. It was my plan to disappear from care if I was ever tested.
--As late as 1997, I went to a walk-in clinic for a Hepatitis A vaccine. The doctor was very interested in tracking my sexual contacts (I didn't have any at the time). I believed the doctor would test my blood for HIV without my consent, so after receiving the first Hep A vaccination shot, I left the clinic and never returned for the second shot necessary to complete my vaccination.
I emphasize that HIV denial was not driving these behaviors. I sought the Hep A vaccine because I feared Hep A would accelerate HIV disease progression; I was virtually certain that I was HIV positive. But my priority was to protect my quality of life for the time I had left before progressing to symptomatic AIDS. I had to protect myself from the severe psychological injury of a premature HIV test which would have:
1) destroyed the quality of my remaining healthy years and
2) crippled my ability to make the lifestyle changes (regarding stress, diet, sex and recreational drugs) recommended by doctors and AIDS activists to slow HIV progression. No one recommended acute insomnia, anxiety disorder, self-medication with alcohol, or depression for patients with HIV, except those doctors who tried to coerce me to test prematurely. Fortunately, Article 27-F gave me the tools to protect myself from those doctors' errors in clinical judgment.
I emphasize that I am talking about a premature
HIV test. When a patient refuses to test, the proper procedure is to help that patient transition to readiness to test
, using the tools (counseling, support, confidentiality) that Dr. Frieden disparages and proposes to abandon.
Dr. Frieden's argument is that the testing equation has changed because HIV is now temporarily treatable. No one can argue with his goal to get more people into early HIV treatment. The question is how to do it. I come back to the 'fight-or-flight from care' question with which I am so personally familiar. Dr. Frieden wrongly assumes that the general population is well-informed about the advances in HIV treatment. But a person proactively avoiding an HIV test may also avoid information about HIV. Today, I can pick up POZ magazine or HIV Plus and get the latest news about treatments. In 1999, I would not look at those magazines because reading about HIV threatened my defense mechanism against my AIDS anxiety. I thought protease inhibitors were just a marginal improvement on AZT, and would only prolong the period between illness and death, a period I wanted to shorten, not prolong. I feared a protacted period of suffering and invalidity much more than I feared death
. To get past my resistance to testing, a skilled and humane physician would use all the tools that Dr. Frieden proposes to abolish.
The proper cost-benefit analysis of Doctor Frieden's proposals would weigh the financial resistance by doctors to universal testing with written consent against the 'flight-or-fight from care' response that Dr. Frieden will unwittingly trigger. Dr. Frieden's cost-benefit analysis is distorted for the following reasons:
1) Dr. Frieden dilutes the downside of his proposals by weighing that downside against the universe of patients, the vast majority of whom are at low to virtually no risk of testing positive. Consider, as a hypothetical example, a cancer drug that is contra-indicated for 10% of patients with cancer. Dr. Frieden would certainly want to screen for that 10%. If you included in the risk pool all the patients who don't have cancer and wouldn't take the drug, that number could drop from 10% to a negligible fraction of a percent, not worth the cost of screening, but that analysis would be ridiculous. Yet that is how Dr. Frieden does his cost-benefit analysis of pre-test counseling under routine or universal testing: he includes the many thousands of patients who don't need pre-test counseling because they are almost certain to test negative.
2) He imagines that HIV stigma does not exist because of the protease breakthrough. This theory is only a figment of Frieden's imagination. He knows nothing about stigma.
3) He looks into his database and claims there is no evidence of the 'flight or fight from care' response. But when people are proactively trying to stay off the health commissioner's radar, his database cannot gauge this phenomenon. Nevertheless, the evidence is right there in the very problem Dr. Frieden wants to solve: emergency room presentations of advanced HIV disease.
When an uninsured patient pops up on the radar screen in a walk-in clinic (as I did in 1997), it is bad policy to confront that patient immediately with a quasi-mandatory HIV test. The patient may give transient, passive or psuedo-consent and then leave the clinic and never return--as I did. I've described my own elaborate, proactive efforts to avoid premature testing: aliases, disappearing from care, even avoiding health insurance. Dr. Frieden counters with his database, which is worth little more than a Ouija board in understanding these complex social issues. That the Health Commissioner, a man as brilliant as Dr. Frieden, could make such absurd claims as "HIV stigma no longer exists" shows the inadequacy of the tools Dr. Friden uses to understand these problems.
I come back to my example of the financial roadshow. Dr. Frieden can't pass the 'E.F. Hutton' test--he'd be speaking to an empty room. No investor would be interested in his Powerpoint presentation. They would only be interested in his track record of actual results. I certainly don't blame Dr. Frieden for the disastrous AIDS statistics in New York, but there is no statistical evidence that Dr. Frieden really knows what he's talking about.
In his HIV Roadshow, Dr. Frieden likes to show a Powerpoint map of New York City AIDS statistics. The map shows a relative oasis (Chelsea and Greenwhich Village) in the middle of a disaster area (most of the city). The oasis has been the domain of GMHC, the Gay and Lesbian Community Center, and community-based AIDS organizations. The disaster area has been the domain of the Health Department, the Board of Education, the CDC and the Department of Corrections. The fundamental problem wth AIDS policy has always been this: community AIDS activists--the people who really know what they are doing--have never been the final decision makers. AIDS activists have been proven right consistently, e.g., on needle exchange, on housing, on condoms-vs-abstinence only education.
The way I see it, there is only one question for the New York State legislature: who is most competent to advise them on these complex social issues: Dr. Frieden with his clinical intellect and his database, or Housing Works, GMHC, and other community-based organizations, with their stronger understanding of the cultural and social forces at play in the AIDS epidemic.