Hello: This is the text of my op-ed which will run Sunday Oct 12 th in the Seattle Times. Thanks - Phil
PUBLIC HEALTH IS COUNTING ON YOU....
Two or three years ago, a local TV station interviewed me at my home for a show they were doing on privacy. "Nice place you have here," the reporter said as they walked in the door, "and you don't even pay much for it," he observed, citing my mortgage amount. Later, he asked if my son still lived at home, referring to him by his Social Security number. The last straw was when he commented that I looked fine, my sinus surgery must have gone well, and wasn't Dr. Lin a great physician.
Privacy is under attack. Commercial interests are treating the most intimate aspects of our lives as commodities to uncover and be traded on the open market. Government technocrats, too, see great value in getting our personal data for their uses, rationalizing it as being for our own benefit or for the public good. Computers have greatly expanded the ability to amass, correlate, and distribute such data. As the New York Times recently noted in a front page story, "high tech sleuths compile electronic dossiers on private lives" using a variety of strategems to obtain the information we are told is confidential
Thus, concerns arise about the proposals being made by public health officials to require the reporting by name of all persons who test positive for HIV (instead of only -- as is current law -- those who have full-blown AIDS), and to encourage "HIV surveillance" and the tracking of people's sexual partners.
Epidemiologists are trained to be bean counters. Observe; record; add. We can understand that the narrow training of such technocrats would be reflected in their recommendations. These are not evil people, but their tunnel vision sometimes leads them to be misguided. Given the continuing stigma associated with HIV, why are government leaders considering such proposals?
Why has AIDS always been treated differently from other contagious diseases? The unprecedented stigma associated with HIV is due to its relationship to sex, body fluids, needle drugs and the fact that its early incidence was largely among social and political outcasts -- gays, druggies, people of color.
The hysteria and discrimination around AIDS -- women with breast cancer aren't burned out of their houses, men with hepatitis aren't fired from their jobs, kids with leukemia aren't refused enrollment in school -- meant that AIDS had to be handled differently. In particular, extraordinary privacy protection were necessary, not only to protect the civil liberties and the integrity of people with AIDS but also to further the public health objectives of getting at-risk people into the health system. The government's original position, against names reporting, was in recognition of this reality.
The existence of new drug therapies for AIDS is being used by the public health establishment to achieve goals it has had for many years -- names reporting and contact tracing. The argument is that HIV should be handled like gonnorhea, for example: reported, along with names/addresses/phone numbers of all the person's contacts, so that public health officials can notify those who might have been exposed.
Although 29 states already have some form of mandatory names reporting, 26 of these have very low incidence of the disease and contain less than 25% of the nation's population.
BIG BROTHER WANTS TO KNOW YOUR HIV STATUS
We cannot analyze a proposal for HIV+ names reporting apart from the real world context which spawned it. Our society experiences increasing monitoring, surveillance, and control by powerful groups over weaker population ones. Bosses monitor workers (even for their conduct when they are not working), insurance companies want to know about your family's genes, all new hires must be recorded in a single Federal computer system. AIDS continues to strike hard among groups which are traditionally disempowered -- people of color, gays, women, children, drug abusers -- so it is easy for technocrats to suggest monitoring them.
Personal privacy is an important American value. A recent statement by the President and Vice President (about the internet) remarked that "Americans treasure privacy, linking it to our concept of personal freedom and well-being....It is essential, therefore, to assurre personal privacy...if people are to feel comfortable...." Even Alan Greenspan acknowledges that "fears of invasion of privacy" are " a major public policy issue."
Nonetheless, Donna Shalala, Secretary of the U.S. Department of Health and Human Services (which includes public health) last month articulated a truly startling notion -- that each of us has an obligation to have our health information disclosed "for National Priorities." (Yes, she even capitalized the words!) She claimed that obtaining permission for the use of the info "would create significant obstacles in our efforts to fight crime, protect public health, or understand disease." Therefore, "individuals' claims to privacy must be balanced by their public responsibility to contribute to the common good, through use of their information for important, socially useful purposes...." Mussolini's plan for a corporatist Italian society used the similar language -- the individual exists for the good of the hierarchical state.
Note that Ms. Shalala uses the pronoun "their" rather than "our." In her brave new tomorrow, it is quite clear that elites control the intimate information of the masses, and quite clear which group Shalala and her public health cohorts are in. "The Justice Department got almost everything it wanted" concluded one Administration official to the NY Times, which thought the plan to be "dangerously defective."
"The Clinton Administation's claim that law enforcement has not been abused access to record begs the question," the American Civil Liberties Union said. "One need only look at our government's sorry history of illegimately accessing and revealing innocent people's records -- from Hoover's FBI to Watergate to Filegate -- to understand that this aspect of the proposal should be disturbing news to all Americans."
The Administration proposes that researchers (technocrats with lab coats), government auditors (technocrats with computers), public health officials (technocrats who know what's good for us) and cops (the technocrats' enforcers) should have unimpeded access to our health records. Of course, that means to HIV records too, no matter what assurances of privacy local public health officials may prattle about. The Ninth Amendment says that we the people hold all of our natural and inalienable rights except those we cede to the goverment; the bureaucrats seem to believe that we hold only the rights they decide are not necessary for our "responsible" social functioning.
PEOPLE COUNT; WHY COUNT PEOPLE?
Currently most federal and state AIDS funds are distributed to communities according to the numbers of their cases. Now, the mesaurement is cases of AIDS, but in the future (if, in a self-fulfilling prophecy, the states convert to names reporting) it would be based on the number of people who are HIV positive.
Public health also claims it is getting harder to follow the disease. Because of the new drugs, larger numbers of people are staying in the public health limbo of being positive but not being so sick that they get AIDS.
Instead of changing the basis for the awarding of funds, the proposal suggests we just sacrifice the medical privacy of sick individuals, apparently by declaring a "National Priority." Liberals in the public health establishment will undoubtedly wring their hands and try to avoid any blame when this information begins to appear in unauthorized channels. (Will the next TV interviewer at my door also know my HIV status?)
AIDS Is Still Exceptional
Virtually all of the 54 "reportable" health conditions in Washington state are ones which can be cured and for which public health provides free access to health care. Neither of these factors hold for HIV disease. Despite some new therapies which appear helpful in managing and slowing its effects, no person with AIDS has ever been rendered free of HIV. Names reporting and contact tracing sound sensible, but we do not know how effective they are, in fact. To be useful, they assume people tell the truth and the whole truth. The more the stigmatization the more the incentive to lie and omit. And we have epidemics of STDs despite names reporting. The editor of the New England Journal of Medicine admits that "nobody can document or prove that [these] traditional methods of control would work better at containing AIDS."
People with HIV are still treated differently; for example, calls for creating a national registry (which doesn't exist for any other disease) are frequently made by homophobic Congressmembers; a recent study found that 24% of Baltimore health care providers had at least one female patient who was physically abused once her partner learned of her HIV positivity; immigrants with HIV (but not other "reportable" conditions) cannot legalize their status in this country.
New Drugs Do Not Provide A Reason To Change Existing Policy
Names reporting is not therapy. We are the only industrial democracy without universal national health coverage; as of early this year, only 25% of Americans with full-blown AIDS were, in fact, receiving the new drug regimes. The federally-funded AIDS Drug Assistance Programs served only about one-quarter of the eligible population in 1996, are underfunded and are going broke. Medicaid is unable to afford coverage for all HIV positive people (at a cost of about $15,000 per year.) And only half of those on the drugs are showing sustained benefits.
So, while the new drugs may make the bean counting more difficult, adding mandatory names reporting will not alter the barriers to proper health care -- poverty and lack of funding for government medical services.
Anonymous Testing Will Be Ended
Although public health officials claim that they will preserve anonymous testing, in reality this is an oxymoron. While the "test" may be anonymous for all, the "testing" process will only be anonymous for those who are negative, since the identity of positives would be forcibly revealed. Especially in the gay community, where solidarity between "seronegatives" and "seropositives" has been a major goal, it is likely that significant additional ill-will would result from such disparate (?) treatment.
In rural areas, where doctors or clinics are few and far between, it is already hard to test truly anonymously. Among urban populations, the use of false names and aliases would probably increase. So would the use of home testing kits.
Thus, the new data epidemiologists record would have errors, of unknown but probably significant magnitude. As a result, it would be likely that public health would soon start calling for an end of anonymous testing as subversive of our "National Priorities." The use of oded identifiers, rather than names would preserve a level of anonymity and, by their uniqueness, allow tracking of the disease.
Discrimination Against People With HIV Still Exists
Although the Americans with Disabilities Act covers the rights of those with HIV and AIDS in the opinion of most observers, numerous recent court decisions have chipped away at these protections, especially for people who are HIV positive but asymptomatic.
Statutes may be clear in forbidding discrimination, but they still can be violated, even by leading liberal instututions: the University of Washington adopted a regulation restricting practice by HIV+ medical students, interns, and doctors despite repeated advice from State and Federal officials that this was illegal; Harborview Hospital had to be taken to court when it tried to fire an HIV+ orderly who had an identifying tattoo, although no patients had complained (the staffer won); after passage of the state's AIDS Omnibus legislation with its strict privacy provisions, Group Health Hospital listed all HIV positive patients on a blackboard in its technical lab.
As Diedre Mulligan, an attorney at the Center for Democracy and Technology, has observed, "it's easy to claim that there have been no violations, because there are few laws to violate."
Why, if not because of AIDS phobia and discrimination, don't other diseases create such irrational and nasty responses? Why didn't the UW go after hepatitis, which is far more transmittable than AIDS?
Names Reporting is Not Necessary for Contact Tracing
The recent MESH (Multi-State Evaluation of Surveillance of HIV) study noted that of HIV-positive individuals, those tested anonymously supplied the same number of partner names as those tested whose names were known. Public health officals need the names of the partners, who might be at risk, not the names of the person who has tested positive.
Indeed, names reporting and partner notification are entirely separable policies. It is arguable that names reporting would make identification of partners less reliable; many people would not be as candid discussing conduct which might be illegal or stigmatized if they had to give their true names.
The identification of partners requires public health officials to establish trust, not use coercion. Lying or omitting names can rarely be proven and is highly counterproductive for protecting the public health. Anonymity is clearly required to assure that people are forthcoming, truthful and accurate. At confidential (as opposed to anonymous) test sites in Colorado, 27% of patients admitted providing false information; indeed, some health care providers encourage it (e.g. using a false name) in jurisdictions where anonymity is not guaranteed.
The Disease Will be Driven "Underground," Thwarting Public Health Measures
If people at risk delay or forgo testing because they fear the system and the repercussions of being known as HIV positive, epidemiological numbers will be reduced and inaccurate, government funds will decrease, and the disease is more likely to spread as those who are ignorant and fearful engage in risky behaviors without the counselling and education which the health system could provide. (It is estimated that 50% of infected Americans are unsure of their status.)
The MESH survey found that 20% said fear of name reporting was a reason to avoid testing. The scholarly literature contains many studies indicating that names reporting discourages testing. "The most common reason given for not getting tested (mentioned by 50% of infected persons) was not wanting states to learn if they tested positive. In addition, 36% mentioned fear of discrimination if others learned they had been tested," according to one 1991 report.
A University of California study found that "40% of the respondents stated that they would have avoided testing if it had not been conducted anonymously. Over 60% stated that they would not have taken the HIV-antibody test if positive results had to be reported to health officials or if contact tracing were conducted. Even with anti-discrimination legislation enacted, nearly half the respondents would have avoided testing if the results had to be reported." In Oregon, the use of anonymous testing identified twice as many seropositive persons as confidential testing using names.
Distrust of public health officials is particularly strong amoung disempowered communities experiencing HIV incidence. Memories of the Tuskegee Experiment, in which the development of syphillis in African-American men was studied while denying them therapeutic intervention are particularly vivid. (A TV show dramatizing the incident recently won three Emmies.)
Several weeks ago it was revealed that pediatric AIDS studies were being conducted in Africa by US health officials and researchers, in a manner which violates ethical and legal norms for the US, and international standards under the Helsinki accords; the New England Journal of Medicine analogized the situation to Tuskegee.
Stigma and the fear of ostracism and discrimination can put a premium on not getting tested, not knowing your status. Public health policies should not facilitate such results.
Politicians Can Easily Override
Any Good Intentions Public Health Officials May Have
No one can give guarantees that a list of names will not legally have to be disclosed in the future, for whatever reason. Only coded identifiers or anonymity can truly protect the privacy of health records.
Being HIV positive already means legal detriments -- for example, barring naturalization as a US citizen. And the government could add additional ones at any time. Last year, with the support of public health officials, conservative state legislators required health officials to serve as informers for law enforcement agencies where there were allegations that someone was knowingly exposing others to HIV.
TOWARDS A RATIONAL POLICY
Yes, we need information to fight this disease intelligently but mandatory names reporting is unlikely to be helpful in reaching our goals. Technocrats confuse means and ends. There are better means for accomplishing our shared objectives.
All of the legitimate goals of public health officials dealing with AIDS could be met by a system of unique coded identifiers. Unique in the sense that there is no one algorithm (e.g. date of birth and last four digits of social security number and first two letters of last name, etc.) known to an elite. Such a system would embody private elements provided by the person (like an ATM PIN) and therefore the system would not be crackable. Not crackable by the cops, by Secretary Shalala, by an insurance company, or by a quarrelsome family member.
People at risk and communities under attack need to feel secure and comfortable dealing with the health system, so they can participate in it and get maximum benefits. Names reporting will discourage health care among such people, where suspicions are already high. Unique identifiers would enable tracking and still protect medical privacy. Big Brother drawing blood doesn't need to know our names.
Professor Phil Bereano is on the Board of the ACLU and was a founder of ACT UP/Seattle and AIDSWATCH. He offered the first University of Washington course on the social and legal aspects of AIDS in 1989.
Next Names News-Media Report_(page 3 of 4)
Congressional Legislation (The Coburn Bill)