AIDS and Privacy

California, more rigorously than any other state, has guarded confidentiality concerning the results of AIDS tests, and this has contributed significantly to the progress made in this state in the struggle to control the spread of the disease. So it is with grave concern that we all must view the new efforts to break down those protections of confidentiality.

Confidentiality is important for two reasons. First, it is essential to an effective public-health program; those most at risk will evade testing at all costs if they risk exposure of test results. The second reason flows from the first. There is still rank discrimination in terms of insurance, housing and employment for those who test positive to the presence of the human immunodeficiency virus that causes AIDS. The basic civil rights of carriers of the virus, and those with the infection, must be protected by strict rules as the state works to implement effective anti-discrimination legislation.

We oppose a move in the Legislature to allow health-insurance companies to require HIV antibody testing for those applying for health insurance. Despite the improved reliability of testing, the presence of the virus does not necessarily mean that the person has AIDS or an AIDS-related complex. Many years might pass before the virus resulted in the disease, and in a significant number of cases there might never be an infection. Yet the test result could be used to bar an individual from protection against the costs of any illness or injury until impoverishment qualified the person for Medi-Cal’s limited protections.

The discriminatory nature of allowing HIV testing for health insurance is further reinforced by the fact that it would apply only to those seeking individual and family health insurance. The majority of people receive protection on a group basis through their employers and are not subject to any tests or to any questions regarding medical history. What is needed here is a broadening of the risk base, not a narrowing by excluding those who test positive.

Major health-protection providers are not among advocates of HIV testing. The largest single provider, the national Blue Cross-Blue Shield Assn., does not advocate HIV testing. The largest health-care organization in California, Kaiser Permanente, has reserved its position and is not supporting legislation to change the regulations.

The principal push is coming from the Assn. of California Life Insurance Companies. We can appreciate their need for HIV test data when writing life insurance. This is an exception that calls for legislation. There is a clear actuarial effect of a positive test result on life expectations, and there already are case studies indicating that a number of persons testing positive have been seeking major health-insurance policies, placing at risk the financial stability of the life-insurance programs.

Many of the life-insurance companies also write health insurance and argue that the same principles apply there. They argue that it is unfair to expect them to assume the risk of AIDS and to force other subscribers to health insurance to pick up the increased cost. We do not agree. The evidence, confirmed by Blue Cross-Blue Shield nationally, is that the cost of AIDS care is not a catastrophic financial problem. The cost, spread over numerous subscribers, is manageable, unlike the effect on life insurance of paying out major death penalties prematurely. The eagerness of the for-profit health-insurance firms to walk away from this health problem is just another argument for the kind of legislation being sponsored by Sen. Edward M. Kennedy (D-Mass.) to mandate health insurance for all, including competitive pools by states or regions where otherwise no insurance protection is available.

There is one other area where modifications of the confidentiality rules may be justified. That is in controls on the way health-care providers--doctors, nurses and hospitals--may share test results on a need-to-know basis. The present rules are so rigid that risks are sometimes increased because of restrictions on sharing test data. While doctors, dentists and nurses must always take precautions, given the global uncertainties surrounding this deadly infection, there are extraordinary precautions that can be taken to provide extra protection when the risk is known. There is good reason to believe that rules can be written for the sharing of test data in this way while maintaining appropriate confidentiality.

Gov. George Deukmejian and the Legislature in the months ahead can do much to create a constructive, sober and bipartisan environment for continuing the work to control the disease while avoiding measures that are certain to do more harm than good. Their positive response will be an effective way to help defeat the extremist AIDS propositions that are planned for next year’s ballots while pursuing proven, effective controls.