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March 17, 1998
"If the 21st century is to be the century of biology, let us make an AIDS vaccine its first triumph."
--President Bill Clinton (May 19, 1997)
©1997 AIDS Legal Referral Panel
* Some of the following is applicable only to the state of California.
Discrimination in Public Accommodations and Services
Discrimination Based on other Characteristics
When considering participation in an HIV vaccine trial, it is important to consider not only the potential medical risks, but also the possibility of being treated unfairly by others. If you test positive for HIV antibodies as a result of your participation in the vaccine trial, there may be instances in which others will assume you to be HIV infected. And while it is not true for everyone, many people who are HIV infected still face discrimination in housing, employment, insurance and the provision of services.
As a California resident, you have some advantages over vaccine trial participants in other states. California has not only been a pioneer in protecting the rights of people infected with HIV, but also had the foresight to create specific legal protections for people who test positive because of their participation in a vaccine trial. While these protections cannot guarantee that people will not discriminate against you, they can give you legal recourse to address harms you suffer as a result of others' unlawful acts.
This brochure addresses some of the major areas in which your HIV antibody status might affect your rights under the law. It addresses employment, insurance, public accommodations, immigration, and the criminal justice system. Many of the protections discussed are specific to California; if you leave the state, you cannot count on being as well protected elsewhere.
The discussion in this brochure is very brief and is not a substitute for talking with an attorney if you have specific questions. You may also wish to speak with your study sponsor who may have previous experience handling a similar problem. If you have issues that are not addressed here, additional resources are listed at the end of this brochure to assist you in getting the answers you need.
If you were to actually become HIV infected at any point in the future, you should contact an AIDS legal services organization to determine how your rights might be affected.
Note on terminology: For clarity's sake, we will refer to individuals who test antibody positive solely as a result of the vaccine trial as "vaccine positive." In contrast, the term "HIV infected" will refer to individuals actually infected with HIV. To avoid confusion, we will not use the term "HIV positive."
Q: How will my insurance coverage be affected if I test positive for HIV antibodies after taking the vaccine?
A: In California, no health, life or disability insurer may withhold any coverage of an individual solely because of his or her participation in an HIV vaccine clinical trial. (1)
If you work for a large employer that is "self-insured," however, these protections may not apply to you. (2) This is because a federal law known as ERISA gives those kinds of benefits plans tremendous freedom.(3) If you are a member of this kind of plan, speak with a benefits attorney.
If you need to prove to your insurer that you are indeed a participant in a vaccine trial, you should be able to do so using the identification card or other identifying material provided by the study.(4)
Q: Can my insurer require me to submit to an HIV test as a precondition to obtaining health insurance?
A: California law prohibits an HIV test from being required or used by health insurance companies as a condition of obtaining health insurance coverage.(5) An application for health insurance cannot inquire about your HIV status. It can only ask if you have AIDS or immune
suppression. Moreover, large group health insurance policies provided through employers typically ask no medical questions whatsoever.
Q: Can my insurer require me to submit to an HIV test as a precondition to obtaining disability or life insurance?
A: Unlike health insurance, a disability or life insurer in California may require an HIV antibody test as a prerequisite to obtaining life or disability insurance and may decline an application based on a positive test result.(6) If this happens, you will need to invoke the protections described above for people who are vaccine positive. You should seek legal counsel at that time to determine how to go about this.
Q: What laws exist to prevent discrimination in my workplace?
A: Important employment discrimination protections are set forth in the Americans with Disabilities Act ("ADA"), the Federal Rehabilitation Act, and the California Fair Employment and Housing Act ("FEHA"). These laws cover most public and private employers in California. Among those not subject to these laws are private employers with fewer than five employees and private membership clubs.(7) Even if your employer is not required to comply with these laws, your county or municipality may have ordinances that could be used to protect you.
Q: How am I protected against employment discrimination by these laws?
A: As a person who is vaccine positive but not HIV infected, it is unlikely that you will be considered "disabled" under these laws, where it is defined as a physical or mental impairment that substantially limits one or more major life activities. But these laws also protect a person who is "regarded as having such an impairment." (8) In other words, if you are discriminated against because your employer presumes you to be HIV infected, you would be entitled to the full protection of these laws as if you were actually HIV infected.
Q: What employment practices are prohibited by the ADA, the Rehabilitation Act, and FEHA?
A: Generally an employer may not refuse to hire, refuse to select for a training program leading to employment, fire, or discriminate against an employee if these actions are based on an individual's actual or supposed disability.
Q: Are there any jobs that I might not be able to do after my trial participation?
A: Under California law, HIV antibody test results cannot be used to determine suitability for employment.(9) Therefore, your participation in the vaccine trial should in general have no impact on your employment situation.
However, if you are employed by the military (other than as a civilian), or are considering a career in the military, the Peace Corps, the Job Corps or the foreign service, your rights will be affected. The U.S. Department of Defense (DOD) maintains a policy of comprehensive, periodic, mandatory HIV antibody testing of all service members and applicants. Entry into military service is denied to those who test positive, regardless of whether they are symptomatic or asymptomatic. Active duty service members who test positive are, however, permitted to continue service, and are not barred from reenlistment.(10) Although you may be able to respond to any action taken against you based on the fact that you are vaccine positive only, and not actually HIV infected, the military's harsh position on HIV matters suggests extreme caution.
DISCRIMINATION IN PUBLIC ACCOMMODATIONS AND SERVICES
Q: What is a public accommodation?
A: Generally a public accommodation is a private business that is open to the public. Public accommodations can include hotels, restaurants, theaters, concert halls, grocery stores, shopping centers, beauty shops, funeral parlors, schools, social service establishments, and places of exercise or recreation. Public accommodations can also be "services" and not merely physical facilities. For instance, medical or dental care can be considered a "public accommodation."
Q: What legal protections are available against discrimination by public accommodations?
A: The ADA restricts a public accommodation from discriminating against people with a disability or people regarded as having a disability. Discrimination means denying them goods or services, or giving them unequal goods or services.
Q: Can my doctor or dentist refuse to treat me after I test positive for HIV antibodies?
A: Generally, a doctor or dentist cannot refuse to treat an individual solely based on one's HIV infection. This prohibition should apply equally to a refusal to serve individuals who are vaccine positive.
Q: Can my landlord discriminate against me because of my participation
in the vaccine trial?
A: Under a California law known as the Fair Employment and Housing Act (FEHA), it is unlawful for the owner of any housing accommodation to discriminate against a person because of that person's disability. Under FEHA it would be illegal for your landlord to inquire about your HIV status when renting to you. If your landlord does discriminate against you as a person who appears to be HIV infected because you are vaccine positive, you will be protected under FEHA as a person "regarded" as having disability.(11)
Q: What effect will my participation in the trial have on my immigration status?
A: To obtain a lawful immigration status, you will be tested for HIV. If positive for HIV antibodies, there is a complicated waiver procedure through which you would attempt to demonstrate that you are no threat to the public health. Although being only vaccine positive would give you a strong argument, the Immigration and Naturalization Service, like the military, is harsh in dealing with HIV issues. If you are a non-citizen considering participating in the trial, we strongly encourage you to speak with an immigration lawyer first. (If you are already a citizen and only need a passport, there is no requirement for HIV testing.)
Q: Will the vaccine trial affect my ability to emigrate to another country?
A: It depends on where you wish to go. Certain other countries refuse citizenship to those who are HIV infected. Some other countries may also restrict entry to people who test positive. The U.S. State Department maintains a list of the countries that require testing.(12) You may also try contacting that country's embassy to see what restrictions apply.
Q: Can I be tested for HIV if I'm placed in jail?
A: It depends. If you are actually convicted of prostitution or a sex offense, you will be subject to an HIV antibody test.(13) If you have been charged (but not yet convicted) with a sex crime or with an assault on a police officer, firefighter or emergency medical personnel, you may be tested for HIV if the victim petitions the court. (14) If you are in this situation, you should speak to your attorney or public defender and explain the meaning of your test result.
DISCRIMINATION BASED ON OTHER CHARACTERISTICS
Q: Are there potential problems in telling others of my participation in the trial?
A: There are some potential problems. Some members of the public may assume that participants in the vaccine trial are selected because they are members of groups that are at increased risk of HIV infection. These groups include: (1) sex partners of infected persons; (2) gay and bisexual men; (3) present or past injection drug users; (4) male or female sex workers and their sex partners.
Thus disclosure of your participation in the vaccination trial may suggest to some sexual relations with someone at increased risk, homosexuality, past or present drug use, or prostitution.
If you experience discrimination based on one of these actual or assumed factors, you may have some protection under the law. For instance, the ADA prohibits discrimination based on association with someone with a disability.(15) So if your risk factor is a sexual relationship with someone who is HIV infected, the ADA may provide you some recourse. If you are or are presumed to be gay or bisexual, and are discriminated against on that account, California law may help, although the time period to file a complaint for the discrimination is extremely short only one month.(16) If you are an injection drug user or a sex worker, you may have no protection against discrimination based on that fact.
Q: Can anyone discover that I'm participating in the vaccine trial?
A: You are not obligated to disclose your participation in the vaccination trial to anyone. Your trial sponsor may share your name and the fact of your participation with the California Department of Health Services. You can check with your sponsor to see if that is their practice. Neither the state nor your sponsor may disclose your participation to any other party without your written authorization.
Q: What if I am somehow hurt by the vaccine itself?
A: Although the California legislature has established an AIDS Vaccine Victims Compensation Fund, the fund is not available to individuals who received the vaccine at the clinical trial stage.(17) You may have rights against the manufacturer of the vaccine. The consent form you sign should indicate whether the trial you are in limits your rights in any way.
If you believe that you have been the target of discrimination based on your HIV status or your participation in the vaccine trial, there are a number of agencies that can assist you. The following is a brief list of available resources.
AIDS Legal Referral Panel
582 Market St., Suite 912
San Francisco
(415) 291-5454; (510) 451-5353
The AIDS Legal Referral Panel of San Francisco provides free and low-fee legal services to people with HIV and people with HIV-related legal problems in five Bay Area Counties.
San Francisco Human Rights Commission
25 Van Ness Ave., Suite 800
San Francisco
(415) 252-2500
Equal Employment Opportunity Commission (EEOC)
San Francisco Office
901 Market St., San Francisco
(415) 744-6500
Oakland Office
1301 Clay St., Oakland
(510) 637-3230
Department of Fair Employment and Housing (DFEH)
30 Van Ness Ave., Suite 3000
San Francisco
(800) 884-1684
ENDNOTES
1. California Health & Safety Code § 121280(b).
2 Some large employers create a fund to pay their employees' health, disability or life claims, instead of purchasing actual insurance policies. These plans are called "self-insured." In some instances these employers hire an insurance company to administer the plan. So it may be hard to tell whether your plan is self-insured or not. Ask your benefits administrator if you have any doubt.
3. ERISA, which stands for the Employee Retirement and Income Security Act of 1974, allows self-insured plans to fall outside of both state and federal regulation that applies to regular insurance plans.
4. California Health & Safety Code § 121280(c).
5. California Health & Safety Code § 120980(f); California Insurance Code § 10291.5(c)(2).
6. California Insurance §§ 799-799.10.
7. The Rehabilitation Act covers all federal workers and all workers of an employer who is a recipient of any federal funding (29 U.S.C. § 794(b); the ADA covers all employees of states and their political subdivisions (42 U.S.C. § 12202) and private employers with 15 or more employees (42 U.S.C. § 12111); FEHA covers private employers with five or more employees, except for claims of mental disability discrimination, for which an employer must have 15 (California Government Code § 129401(1)), nor does FEHA cover religious organizations or non-profits.
8. 29 U.S.C. § 706(8)(B) for coverage under the Rehabilitation Act; 42 U.S.C. § 12102(2) for ADA coverage; California Government Code § 12926 for FEHA coverage.
9. California Health & Safety Code § 120980(f).
10. 32 C.F.R. pt. 58.
11. California Government Code § 12926.
12. The U.S. State Department website address is http://travel.state.gov/hivtestingreqs.html.
13. California Penal Code §§ 1202.1, 1202.6.
14. California Health & Safety Code §§ 121050-121065.
15. 42 U.S.C. Sec. 12112(b)(4).
16. California Labor Code § 1102.1.
17. California Health & Safety Code §§ 121270(a) and (c)(3).