This article is excerpted from "Living With HIV Disease:  A Legal Guide for Louisiana" (5th edition), which is available in its entirety online at www.aidslaw.org.

HIV-related discrimination is a very real problem.  Many people, possibly including your employer, co-workers, landlord, neighbors, teachers, or health-care providers, are irrationally afraid of even casual contact with someone who has HIV.  Their fear can cause you and those close to you to be denied a wide range of opportunities and services.

Although much of this discrimination is illegal, the law does not always offer effective protection.  Lawsuits take time, money, and require that you prove discriminatory intent, which is often impossible.  Also, some HIV-related discrimination is not illegal. 

For example, small employers, small landlords, and religious organizations are often not covered by anti-discrimination laws.  Also, health, life and disability insurers can legally refuse you new coverage if you are HIV-infected and may sometimes be able to reduce or eliminate your coverage.  However, under the Health Insurance Portability and Accountability Act or 1996 (HIPAA) there is greater availability of insurance coverage than was  available before.  It is subject to certain restrictions.

Many people with HIV/AIDS are choosing to fight this discrimination, and its underlying stereotypes and fears, by "going public" about their condition.  By showing the public that people with HIV are ordinary people, they have greatly changed general attitudes.  As more people with HIV are open about their condition, the better the condition will become.

But before you make a disclosure to anyone, carefully examine the possible consequences.  Determine what types of discrimination you may face and how likely this will occur.  If you are unsure of what could happen, consult AIDSLaw or your local AIDS service organization.  Consider also that even a "confidential" disclosure to a close friend or family member may be passed on to others.

For some, there will be few or no adverse consequences to disclosing.  Others may find themselves in the front lines of this battle.  If you are unable or unwilling to deal with the discrimination you may face, you need to keep your HIV status confidential.  In this situation the simple rule is:  DO NOT TELL ANYONE unless there is a strong reason why that person needs to know and you are sure the information will go no further. 

DO NOT EXPOSE ANYONE ELSE TO THE VIRUS.  If you do so, you could face severe criminal and civil penalties.  Louisiana law (Revised Statute 14:43.5) specifically makes it a crime to intentionally expose another person to HIV without the informed consent of that person.  The penalty for violating this law is up to 10 years at hard labor.  Other criminal statutes, including attempted murder, aggravated battery, and negligent injuring, may  also be applied when someone has exposed another to HIV, whether sexually or another way.  Informed consent is not a defense to these crimes, nor is the fact that the other person was not infected.

Also, if you do expose someone, they may be able to sue you for money damages, for the injury suffered.  Some Louisiana courts have allowed lawsuits even where the exposed persons did not become infected, to compensate for the anxiety they suffered while waiting to learn their HIV status.

The law has yet to clearly define what is "exposure" to HIV.  But to protect yourself from this charge, you should, at a minimum, tell partners of your status and strictly follow safer-sex guidelines.  If you are unsure of the guidelines or feel uncomfortable bringing the subject up with sexual partners, contact your local AIDS service organization for instruction and counseling.

Transmission, or at least "exposure," is also possible during certain types of medical procedures.  If you decide not to inform a medical care provider of your HIV-status, you should inquire and observe whether or not he or she is following infection control procedures known as "universal precautions."  You need not feel uncomfortable doing this:  these procedures are designed to protect you from being infected by the medical provider, as well as vice versa.  If you believe the provider is not following universal precautions, seek care elsewhere.  These steps should minimize the possibility of a lawsuit by your medial providers.

Protecting the confidentiality of your medical records poses special problems.  Many people have access to these records:  the entire staff at your doctor's office; literally dozens of hospital staff whenever you are hospitalized; if your employer is involved in processing your medical claims, then several of your co-employees.  (Your employer is also entitled to see your medical records for worker's compensation purposes.) If one of these people gossips, the information in your medical records could become widely known at your job or in your community.

Also, whenever you apply for new insurance coverage or file a claim on an existing policy, the insurance company may seek to review your medical records.  If you refuse to sign the consent request, the company will deny your application or claim. 

Be aware that many insurance companies share information with each other:  if one insurance company learns that you have a medical problem, many other insurers may have access to this information through an organization called the Medical Information Bureau (MIB).  Insurance companies may also share information n your health and lifestyle with consumer credit reporting agencies that, in turn, may sell this information to employers, landlords, lenders, etc.

Other organizations may ask for a "consent" that for all practical purposes you are required to give.  For example, schools may require access to your medical records before admitting you and lenders may require it before making a loan.

Finally, medical and social services providers must report all cases of AIDS, including the patient's name, to the Louisiana Office of Public Health.  HIV-infection must also be reported, though the provider can omit the patient's name.  Cases reported to local and state authorities are also reported to the federal Centers for Disease Control (CDC).  While Louisiana health authorities have, to date, maintained the confidentiality of this list of names, the state legislature could make this list available to other agencies.  For example, the state of Illinois compares its list of HIV-infected persons with a list of all health care workers and limits the practice of infected health care workers.

For these reasons, we suggest you keep your HIV-status out of your medical records, at least until you begin receiving treatment for HIV.  Until recently, treatment for HIV-infection was not started until the virus had begun to seriously compromise the immune system, which usually does not happen until several years after infection.  However, with recent improvements in anti-HIV medications, many doctors now believe in starting treatment as soon after infection as possible.  To keep mention of HIV out of your medical records, take the following steps:

1.     If you believe you may be HIV-infected, but have not yet been tested, be tested anonymously.  A so-called "confidential" test result may be available to all the groups and individuals mentioned above.  Contact your local AIDS service organization to see where anonymous testing is available in your area.  If there are no anonymous test sites available to you, go to a doctor or clinic where you are not known and use an assumed name.  Do not submit an insurance claim for an HIV test.

2.     If you test positive, you will need periodic medical tests to monitor your immune system and thus determine when you should begin treatment.  Check with your local AIDS service organization to see if this monitoring is available anonymously in your area.

At some point you will need treatment and your doctor will keep records of your condition and treatment.  The following precautions will minimize unnecessary disclosures of those records:

1.     When you see a doctor, whether for testing, monitoring or treatment, first ask how and where your HIV-related medical information will be recorded and who might eventually have access to this information.  Some doctors will keep HIV information in a separate file or omit it entirely if it will pose problems for insurance coverage, employment, etc.  Again, discuss these matters with your doctor before you receive HIV-related treatment and certainly before you file any insurance claim, even if that claim is unrelated to HIV.

2.     To treat you for HIV, your doctor only needs to know that you are infected.  He or she does not need to know when you first tested positive and this information definitely does not need to be in your medical records.

3.     If you decide to pay a doctor out-of-pocket and will not be filing an insurance claim, do not provide that doctor with insurance information.  Simply tell him or her that you will be paying directly.

4.     If you must consent to the release of medical information, restrict the release to specified records to specified persons for a stated purpose and a limited time.  Whenever possible, alter blanket release forms by wrigint in these specific restrictions.  Also, ask your doctor to restrict the type of information revealed for a particular purpose.  For example, to substantiate an insurance claim, your doctor should release only the portion of your record that is directly relevant to the claim.  He or she should not release your whole file, even if the insurance company asks for it.

5.     Medical records, particularly when circulated to insurers, employers, and government agencies, can collect a surprising amount of erroneous information that is easily misinterpreted.  Review the contents of your medical records and try to correct errors.  (You can request a copy of your Medical Information Bureau file by writing to The Medical Information Bureau (MIB), P.O. Box 105, Essex Station, Boston, MA  02112; or by calling (617) 426-3660.  MIB procedures allow you to challenge incorrect information.)

6.     Finally, if you are seeing a doctor for a condition that has no connection to your HIV-status, such as accident related injuries, etc., there is no need for you to mention your HIV-status to that doctor.  (You should, however, make sure all your health care providers are following proper infection control practices, also known as "universal precautions.")