September 16, 1997 Op/Ed
AIDS: THE NEED TO KNOW (Editorial)
The recent news that AIDS is no longer the No. 1 killer of young and middle-aged adults offers hope that the spread of the deadly virus has slowed. Still, outdated attitudes about confidentiality mean that too many people may be needlessly exposed to the disease.
Only half of the states require that names of people infected with HIV be reported to confidential registries. New York and California, two states with the most AIDS cases, have no reporting requirements. Illinois also has put confidentiality over public health concerns by not mandating HIV reporting.
Now, the prestigious New England Journal of Medicine is urging mandatory reporting. Such a policy, it says, will increase the chances that those infrected with HIV will get early treatment. Like syphilis and gonorrhea, HIV is a communicable, sexually transmitted disease and should be reported to state health officials, just as those diseases are.
The medical journal recommends reporting be accompanied by efforts to track down people with whom the HIV-positive person had sex or shared needles. There is no logical reason to believe that reporting the names of HIV-infected people would lead to widespread confidentiality breaches or unwittingly prevent sufferers from obtaining treatment that could stave off the onset of full-blown AIDS. Already, names of AIDS sufferers are reported to the state with no apparent breach of privacy.
There is more risk that the continued ban on reporting eventually will lead to a rise in AIDS deaths. Last year, Illinois had more than 16,000 AIDS cases. That figure is now closer to 19,000, and about 65 percent of those individuals have died. The state's best estimate is that 40,000 Illinois residents are HIV-positive. The delay in implementing this lifesaving public health policy can only hinder continued gains against AIDS.
November 5, 1997 - Page 50 (Letter)
NO NAMES, PLEASE
An Oct. 17 editorial again calls for a mandatory HIV registry in Illinois. Such a system -- which would require identification by name of each person infected with the virus -- would hinder rather than help efforts to prevent and treat HIV infection.
Research consistently has shown that name reporting deters large numbers of people from testing for the virus. The elimination of anonymous HIV testing also makes people wait longer to get an HIV test, or decide not to retrieve their test results, and delay testing until they are seriously ill.
The editorial supports its call for an HIV registry by claiming that it is impossible to track HIV infection accurately without reporting names. The experience of Maryland, which conducts HIV surveillance using unique identification codes instead of names, indicates that mandatory name reporting is not required to conduct effective HIV surveillance. Moreover, while the editorial suggests that we should all feel safe trusting our "secrets" to the state, discrimination against people with HIV still abounds, and legal protections are far from secure.
While treatment is standard for other communicable diseases, we still do not provide treatment for many of those who have tested positive for HIV.
Almost 30 percent of those infected with HIV do not have insurance and tens of thousands of people who could benefit from treatment cannot obtain it.
Name reporting does not address this problem.
Heather C. Sawyer, Lambda Legal Defense and Education Fund, Ann Hilton Fisher, AIDS Legal Council of Chicago, Barry C. Taylor, Legal Advocacy Services Equip for Equality
# # #
The Seattle Times
Wednesday, Oct. 15, 1997
The AIDS epidemic: Old strategy, new foe
ADDING HIV to the list of 54 other diseases that must be reported to state public-health officials is an appropriate next step in fighting the AIDS epidemic.
Old-fashioned public-health benefits that come with early consultations between infected people and health professionals now surmount the arguments in favor of keeping positive test results anonymous.
State public-health officials want to address HIV with the proven techniques of their discipline. The Governor's Advisory Council on HIV/AIDS has been gathering testimony before making a recommendation in January. This change is worthy of endorsement by the council and support by the governor.
Public-health practices are heavy on information, counseling, support and treatment. The key is to be able to target education and resources where they will do the most good, at the earliest stages of infection.
Reporting the names and demographic profile of those with positive HIV tests is part of that process. King County and state officials are confident they can protect the names with the same security that already shields the privacy of people with fully developed AIDS.
The fear, of course, is that having a requirement to report positive tests will frighten people away from being tested. Indeed, people say exactly that in polls on the subject, but actual behavior is different. New Jersey, the largest state with names reporting, experienced no decrease in testing at public clinics.
HIV reporting is no panacea. Promoting early access to new treatments is critical and hopeful, but the drug regimens are expensive and failure rates are high for some drug therapy. Access to insurance and the vulnerability of existing coverage for an infected person are major worries.
But the toughest medical, legal and social issues cannot be addressed and reformed without good information. Getting a better epidemiological handle on HIV is part of stripping the ignorance and emotion away from public discourse about the AIDS epidemic.
If the gay community views public moralizing about homosexuality and stigmatization of infected people as the real enemy of HIV reporting - and that seems to be the case - it is not helping the cause of greater understanding by opposing routine public-health procedures.
As a practical matter, perhaps this should have happened 15 years ago, but no one was ready for it. Now it is a logical next step to apply established, tested techniques to a modern scourge.
Letters to the Editor
The Seattle Times
To the Editor:
I agree with your October 15 editorial assertion that accurate data about who is getting HIV must be compiled so that HIV prevention efforts and services can be targeted accurately. But I disagree that names need to be a part of the data compiled.
Every study done on name-based HIV reporting shows that some portion of the population will avoid from HIV testing entirely rather than risk being reported by name to a state HIV registry. This was confirmed most recently by a CDC-funded study (costing $4.5 million) that surveyed people across eight states about their perceptions and behaviors around name reporting. Although its findings have yet to be published, preliminary data from this study indicate that 19% -- almost one in five -- identified the risk of name reporting as a reason not to get an HIV test.
Whether the fear expressed is rational or not is beside the point. Giving one fifth of the population any reason to avoid HIV testing is surely not good for the public health -- especially if there is another way to achieve the same ends.
All the benefits of HIV case reporting can be obtained without HIV name reporting. Case-by-case epidemiological data can be collected by tagging reports with non-name unique identifiers. And, rather than having State Health Department personnel make follow-up calls to connect HIV positive people with the care and services they need, why not commission trusted community-based organizations to do it? The experience of other states is that the cost of implementing these measures is roughly equivalent to the cost of name-based HIV reporting. More importantly, they achieve the results while eliminating the need to collect names.
The list of names that is not created is a list that doesn't have to be protected. Isn't it smarter to avoid both real and perceived confidentiality risks and their consequences at the outset than to attempt to ameliorate them, once incurred?
Sincerely, Anna Forbes,MSS
The writer is a professional AIDS Policy Analyst and an instructor at the Bryn Mawr School of Social Work and Social Research. She has been researching the dangers of, and effective alternatives to HIV name reporting since 1990.
# # #
Subject: Accurate count of HIV does not equal better services
From: Multiple recipients of list <aidsact@CritPath.Org>
The arguement that a more accurate count of cases will in anyway make arguing for more money or services for HIV+ people is incredibly flawed. Look at who is sponsering these measures and tell that to me again with a straight (pun intended) face. These people are not our friends. This is about screwed up priorities and denial of funding and services , if anything. The home test makes that arguement moot anyway. These bastards should be telling us why they aren't providing universal health care, rather than wasting our time with bullshit about how knowing names of positive people can improve services or anything else associated with the epidemic. there is no logical train of thought in that. It is quite simply a lie and a distraction from getting about the real work of educating, treating and curing AIDS. I have to go meet with our ASOs tomorrow and act right. Wish me luck. This whole issue has had me in a badass mood for a week, and it has spread to another 7 or 8 folks here- complaining about it to anyone who will listen. I just wish someone could convince me that anything good could come of names reporting/UI or even an accurate count. What information will this provide that common sense doesn't already tell you that will keep people from becoming infected, getting sick or dying? I need to be convinced that this isn't just pissing up a rope, and I don't think it is anything but that.
# # #
This editorial is from today's New York Times (Friday October 24, 1997):
Privacy in H.I.V. Reporting
The Centers for Disease Control makes a good case for mandatory reporting of all cases of H.I.V. infection. But any reporting plan must protect the privacy of infected individuals.
Although every state requires that AIDS cases be reported to health authorities, only 26 states collect such data on individuals infected with H.I.V. who have not yet developed AIDS. New York, for example, does not require H.I.V. reporting.
New medical advances that delay the onset of symptoms and reduce death rates have so altered the epidemic that collecting data on only those in the advanced stages of the disease is now inadequate. A national reporting requirement would allow authorities to track the disease better, target prevention services to vulnerable populations and allocate medical resources more effectively.
Even so, great care must be taken to protect individual privacy. Many fear that their H.I.V. status, if it became known, could be used against them in employment, housing and health insurance. Unless confidentiality can be guaranteed, a reporting requirement will very likely deter people from being tested and seeking medical care.
One way to avoid unauthorized disclosure of sensitive information is to use anonymous coded identifiers in reporting H.I.V. patients instead of their names. This approach may be more costly to set up and manage, but it would insure strict security of reported information. A proposal with weaker privacy protections would undermine efforts to promote early testing and treatment.
# # #
CDC: NO "IMMEDIATE PLANS" TO MANDATE REPORTING
John W. Ward, M.D., the chief of HIV/AIDS surveillance for the U.S. Centers for Disease Control and Prevention (CDC), told The New York Times this week that the CDC has no "immediate plans" to require states and cities which receive its funding to keep records on individuals who test positive for HIV. But he did not rule out the possibility that the CDC will eventually institute such requirements, according to the Times report. Ward was among the authors of an article in a recent issue of the New England Journal of Medicine which proposes a national system of HIV reporting. The article argued that the advent of more promising treatments for HIV disease makes it imperative to better track HIV infections and link HIV+ people to care. Most surveillance efforts in place to date focus on reporting cases of diagnosed AIDS, and Ward said that monitoring based only on the more advanced cases ignores the value of early interventions based on the new treatments.
In Pennsylvania, formal reporting is only made on those officially diagnosed with AIDS. Those who test HIV+ but have not progressed to AIDS are not reported. Instead, various statistical formulas are used to project the numbers of HIV+ people. HIV reporting is legally mandated in New Jersey.
Critics of HIV reporting have noted that while the CDC is encouraging mandating the collecting of individual reports on HIV status, the federal government has not allocated additional funding to assure that those reported are linked to follow up medical services. While most AIDS advocates do not oppose the concept of HIV reporting, they have challenged the need for the maintenance of a government list that includes the names, addresses, and other information on those who test HIV+, instead calling for the use of coded reports to protect the anonymity of those seeking HIV testing. Most studies have indicated that a significant number of individuals at high risk of HIV infection will avoid getting tested if their name and personal data is reported to government officials. In response to Ward's article, the American Civil Liberties Union said last week that it opposed mandatory name reporting of HIV infection, which it said would "drive infected people underground." It also supported a coded identification method. It criticized Ward's article for focusing on the "weaknesses of unique identifiers [codes] without focusing on the weaknesses of name reporting."
Regulations on what information is required in disease reports is traditionally a state matter, and the implementation of HIV reporting in Pennsylvania would require the adoption of state, and possibly local, new regulations. In Philadelphia, which operates under its own city charter, the city Board of Health has historically determined what diseases must be reported to the Health Department and the nature of such reports. Because the CDC cannot itself mandate such reporting, it is believed that the agency, which funds most AIDS surveillance efforts, will begin to include such a requirement as a condition of receiving federal funds. This belief has been encouraged by a recent survey issued by the CDC to all fifty states and the six cities which receive its surveillance funding (including Philadelphia), asking them how they intend to implement HIV reporting and by what date.
It is not known whether the CDC plans to incorporate a reporting requirement in its funding contracts set to begin in January. Advocates have expressed the hope that Ward's statement that the CDC has no "immediate plans" to institute such a contract requirement means that the CDC will take more time to study the issue, and give more consideration to plans which develop reports based on unique codes for individuals testing HIV+ rather than names.
# # #
Subject: why not just blinded reporting
without any kind of identifiers
From: Multiple recipients of list <aidsact@CritPath.Org>
shalala's proposal to allow law enforcement to look at medical records and use info therein (even if the info they find is NOT germain to the reason they looked in the first place) should strike a chord of terror in a lot of folks' hearts -- this proposal by shalala (given that we have more protection of our video rental card info than medical records anyway...) means that in those states with sodomy laws, sex offender registries (where sodomy is considered a sex offense) and for those on ssi who have a former felony conviction for drug issues, well, we are in big trouble in having a lot of privacy jeopardized as well as our ssi continued or even our names NOT published in a sex registry or having the cops bust us for sodomy (think about it this way -- your hiv test results are in your record. your mode of transmission is MSM. you live in a state where sodomy is illegal.
sounds preposterous? like the cops would never bust you, never inappropriately use "other" information? well, remember that recently in rhode island, a guy got robbed, and when he told the cops and they returned to the scene of the crime, it was a cruising area. the victim got busted for sodomy.)
all of this is a direct result of a name-based system with no federal privacy and confidentiality standards, which we are sorely lacking.
so, while some may not be ginned-up to attack this issue, there is a helluva lot at stake if this parameters of ANY hiv surveillance system are not carved in stone, adequate and appropriate.
# # #
When worse comes to worse, these are the following five options:
You go out and buy a home test kit (note this option, the one most protective of privacy, is anly available to those who can afford it). You sen in your sample by number and get your result back by number. Since you are not obliged to provide any data about yourself, no data are recorded and none reported to any public health entity.
You go to an anonymous test site or get a doctor to test you anonymously. At the test site, demographic data (race, gender, age, risk factor) are recorded. These are aggregated for all people testing positive and the aggregated data are reported to the health department. I don't know whether or not data are collected and reported about anonymous tests when doctors do them. My guess would be they're not.
Note that anonymous test sites function this way regardless of whether the state had mandatory name reporting (MNR) or not. You can still get a totally anonymous test (no names, no UI record) in 18 of the 28 MNR states. Ten have eliminated anonymous testing altogether.
You go to a "confidential" test site or get tested confidentially at a doctor's office or in a hospital. There the same data plus your name are collected and put on file. In MNR states, these data with your name are reported to the county health department if you test positive. The county then reports them to the state. Even in MNR states, however, names are not reported on to the CDC. The state replaces the name with a Soundex code before relaying the info. on to the CDC.
In states that do not have MNR, the name (with data) stays on file at the test site. This is important because some states have used retroactive name reporting when they have converted to MNR. So, if I am tested this year at a confidential test site and my states adopts MNR five years from now, my name may be turned into the HIV registry retroactively at that time. A reason to consider using only use anonymous testing even if you are in a state that doesn't have MNR.
You go to a confidential test site or doctor's office in a state that has UI reporting (e.g. Maryland). The test site does not record your name but, instead, creates a UI for you. If you test positive, your demographic data are reported to the county (and then state) health department by UI. Your name is never reported to the county or state health department but stays at the provider level.
# # #
Congressional Legislation (The Coburn Bill)