Newly Diagnosed or Long-Term Survivor -- What Everyone Should Know About HIV and Their Rights

Newly Diagnosed or Long-Term Survivor -- What Everyone Should Know About HIV and Their Rights

Confidentiality Rights -- the AIDS Confidentiality Act

First, your HIV status should not be disclosed by you to anyone except those people who absolutely need to know (doctors, health care providers, etc.), close friends, most-trusted confidants, and family members. Fellow co-workers are not people who need to know your HIV status. They could betray your confidence and if they told others you were positive, they would be breaking the law.

As laws differ from state to state, you may need to seek legal advice or check the laws regarding confidentiality of HIV disclosure in your state. Section 9 of the Illinois AIDS Confidentiality Act prohibits disclosure of the identity of any person upon whom an HIV-antibody test is performed, or the results of the test, except to a list of certain medical professionals. And the confidentiality act provides for civil and criminal sanctions for disclosure of another's HIV status to unauthorized persons.

Employment and job rights -- Should you tell your employer?

There is no definitive answer as to whether or when you should tell your employer of your HIV status. It is a case-by-case decision, as there are strong arguments against disclosure -- it's none of their business and can often cause you harm. But there are also arguments that the employer should be told in order to afford the employee some of the protections the law offers to people with HIV.

Two times when it is appropriate to tell your employer are: when you are making HIV-related insurance claims or when your job performance is being impaired by HIV. If you are submitting medical bills for treatment of HIV, your employer is going to find out. It's best for your boss to hear it from you rather than through gossip or from the person in charge of benefits.

Your HIV-positive condition is protected as a handicap under the Americans with Disabilities Act (ADA), now in effect, provided your employer has 25 or more employees. In Illinois, the Illinois Human Rights Act, the Cook County Human Rights Ordinance and the Chicago Human Rights Ordinance protect you against discrimination.

If your job performance is being affected, you will need to request that your employer provide reasonable accommodation to your handicap, as required under these federal, state, and municipal discrimination laws. The form of the "reasonable accommodation" you may request is the ability to take short periods of time off from work if you need to do so. You may need to visit a doctor, undergo blood testing to monitor your health, or you may need to rest and otherwise care for and maintain your fitness, energy, and strength.

You should request that your employer instruct your immediate supervisor to permit you to take sick days off, but not to inform him or her as to the reasons for this permission. Although your employer may need to know your HIV status, your immediate supervisor and other employees do not.

You don't want to be fired or laid off because you couldn't perform your job without your employer knowing the reason. If you are fired or laid off without disclosing your HIV status, you lose your legal right to claim that you were discriminated against because of your HIV status -- which might be a violation of the law in your state. You may also want to apply for employer-provided short- or long-term disability benefits. These are only provided while you are an employee.

Whatever you do, do not voluntarily quit your job if HIV is impairing your job performance. Instead, a medical or disability leave of absence should be requested. Otherwise, your right to long-term disability benefits and life insurance may be jeopardized.

If you believe that you have been discriminated against in the City of Chicago or in Illinois, your remedy is to file a complaint with the Chicago Commission on Human Relations, the Cook County Commission on Human Rights, and/or the Illinois Department of Human Rights. Contact information is provided below.

Obligation to Disclose to Sexual Partners -- Is It a Crime to Have Sex?

Reflecting a growing fear about HIV, legislatures around the country are passing laws attempting to protect the public from AIDS. More than 30 states now make it a crime to knowingly transmit or expose others to HIV, and some states are mandating HIV testing for specific segments of the population such as prisoners and pregnant women.

More and more, the trend has been for lawmakers to get tough on people with HIV. The legislative trend has been moving from a period when civil rights and civil liberties for a person with HIV prevailed, to a compulsory and punitive approach. Unfortunately, state legislatures, in their attempt to gain political points by passing laws which make transmission of HIV a crime, only serve to increase the atmosphere of fear that already surrounds HIV/AIDS, inhibiting people from coming forward to seek education, testing, counseling, and treatment. In addition to potential criminal penalties, there is also the possibility of civil liability for having sex if positive, depending on your state.

Again, because the laws differ from state to state, it's best to seek legal advice or check the laws in your own state. However, in Illinois, the state Supreme Court has unanimously upheld Illinois' HIV Criminal Transmission of HIV Act. The case concerned alleged conduct involving vaginal intercourse. The defendant was charged with violation of the law that states, "knowing that he... is infected with HIV, [he] engaged in intimate contact with another." And that intimate contact exposed one person to the bodily fluid of another person in a manner that could result in the transmission of HIV.

Yes, you should disclose. The law does create an affirmative defense if the person who was exposed knew, or should have known, that they were at risk of being infected and consented to having sex with that knowledge. Anyone who is positive and has sex should disclose their HIV status to their partner. The law in Illinois does not include other defenses which should be considered in a criminal prosecution, such as safe sex precautions with the use of a condom.

Illinois law also does not require the sexual partner(s) to have actually been infected and the prosecution does not have to show that the accused had the criminal intent to infect someone else with HIV. Merely having sex ("intimate contact") would be sufficient. Note that there have been very few Illinois prosecutions under this law other than actions involving prisoners who spit on guards.

Online Resources

Ending and Defending Against HIV Criminalization: State and Federal Laws and Prosecutions; here.

"Don't Always Reveal Your Status -- Here's Why," article by Justin Hayford in the May/June 2000 issue of Positively Aware; here.

The Safer Sex and HIV Prevention Expert Forum at, answered by Bob Franscino, MD, who is living with HIV himself; here has a number of materials available -- not just links to the laws themselves, but also legal guides on a wide range of topics and self-help materials that range from a letter you can send when someone is disclosing your status to the form a physician can fill out to get presumptive benefits started while a Social Security application is pending.

The AIDS Coordinating Committee of the American Bar Association maintains a directory of HIV legal services programs in every state. It is available on-line here.

Keeping Your Medical Insurance When You Change Jobs

Employees have felt locked into their jobs to keep insurance coverage for pre-existing conditions. To avoid "job-lock," it is important to know and understand your rights under the Health Insurance Portability and Accountability Act (HIPAA). Under HIPAA, employers' health care plans cannot exclude a new worker's pre-existing condition from coverage for more than 12 months.

If you are HIV-positive and it was known by the insurance company from your old employer, and you have been covered by them for more than 12 months, your HIV status will not be considered a pre-existing condition for your new insurance company. You will have health insurance on the first day of your new job or whenever your new employer's probationary period ends.

When you leave your old job, employers with two or more employees that offer health insurance must notify former workers that they are eligible for certificates of coverage that would verify previous health coverage for new employers. New insurers can only exclude coverage for medical conditions that have been newly diagnosed or treated within the six-month period before the employee enrolled in the health care plan at the new job. However, the exclusion from coverage cannot be for more than 12 months.

Have a Rainy Day Plan -- Putting Things in Order

Everyone should plan for incapacity, regardless of their status. Life is unpredictable. Carry a wallet card with you with contact information for emergency caretakers. If you have a pet at home, carry a pet card to inform emergency care providers that there is a pet in your house that needs care and include information on who should be contacted in case you are ill or injured while away from home.

I also recommend having an ICE (In Case of Emergency) entry in the address book of your cell phone. That listing can help the paramedics call a family member, friend, or partner while you are riding to the hospital in the ambulance. Also, make sure your landlord or apartment building has updated contact information for you, including who can enter your apartment and have access to the important documents you will need.

Resources in Illinois

Chicago Commission on Human Relations
740 N. Sedgwick
Chicago, IL 60654

Cook County Commission on Human Rights
69 W. Washington Blvd., Suite 3040
Chicago, IL 60602

Illinois Department of Human Rights
100 W. Randolph St., Suite 10-100
Chicago, IL 60601

AIDS Legal Council of Chicago
180 North Michigan Ave, Suite 2110
Chicago IL 60601
312 427 8990

Three Essential Documents

Everyone should make a will, power of attorney for property, and power of attorney for health care and share the details of their financial affairs with their agents. This should include the location of all assets and vital documents such as insurance policies, passbooks, deeds, etc.

Double check your IRA accounts and their beneficiaries, pension funds and profit-sharing plans (employees should find out the circumstances under which they can borrow money from their pension or profit-sharing plan), or annuities.

Contact current and former employers to see if there are any pension or survivor benefits available to you. Make sure you still favor the beneficiaries named for those benefits. Review all life insurance policies to make sure the primary and contingent beneficiaries reflect current intentions. Exercise any rights to purchase additional life insurance on existing policies.

Keep in Control of Your Health Care -- Your Rights as a Patient

Each person should decide for themselves their choices regarding medical treatment. A health care power of attorney (HCPA) is the legal document in which you choose someone and give them the power to make medical decisions at a time when you cannot. Your doctor can rely upon the decisions of your agent if the doctor believes that you lack the capacity to give informed consent to health care treatment or even the refusal and termination of care.

In Illinois, an HCPA grants your agent the authority to give consent to and authorize, or refuse, or withhold any and all types of medical care and life-sustaining treatment, even if death would ensue. This would include the right to admit you to or discharge you from any and all types of hospitals, institutions, homes, residential or nursing facilities, or treatment centers.

  • Talk candidly and explicitly with your doctor about what you want him or her to do or not do, make sure you have a meeting of the minds.
  • Don't keep your HCPA in a safe deposit box. You may need it on the weekend when the banks are closed.
  • If you want to be at home, remember you always have the right to check out of a hospital if that's your desire. You are not a prisoner.
  • Or don't check into a hospital -- stay at home. It is easier to not start treatment than to terminate it once it has started.
  • The subjects of death and disability are not pleasant, but with modern medicine's ability to keep people alive longer, each person should make these decisions themselves.

This material is for informational purposes only and subject to the unique needs of each individual. As laws differ from state to state, please check the laws in your state and please consult your own attorney for specific answers to your individual needs and situation. A consultation with your attorney can answer questions about your individual rights for any of the matters raised in this article.

Roger V. McCaffrey-Boss, Esq. is an attorney in private practice in Chicago. He is a graduate of Hamlin University School of Law in St. Paul, Minnesota; a member of the Chicago Bar Association and LAGBAC; and has provided legal services and support to Chicago's LGBT community for more than 34 years. You may contact him at or 312-263-8800 with questions.