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This Month in HIV: Sex, Privacy and the Law When You're HIV-Positive
An Interview With Catherine Hanssens, Esq., Executive Director of the Center for HIV Law and Policy

By Bonnie Goldman

October 2007

Catharine Hanssens, Esq., Executive Director, Center for HIV Law and Policy

This is Bonnie Goldman, Editorial Director of The Body. I'd like to welcome you to This Month in HIV. This month's topic: Sex, Privacy and the Law When You're HIV Positive.

For as long as humanity has known about the existence of HIV, there's been discrimination against HIV-positive people. Since the mid-1980s, people with HIV have been fired, evicted, injured, imprisoned, ostracized and even killed simply for having the virus in their blood. People with HIV have gone to prison for having protected sex without disclosing, or even just for spitting on an HIV-negative person. And they've been fired from their jobs for even less.

So as an HIV-positive person, what can you do to protect yourself -- in life, in love, at work and elsewhere? This month, we're pleased to have Catherine Hanssens, Esq., here to explain the law to us. Catherine is an attorney who has worked tirelessly on HIV-related legal and policy issues since 1984. She is the executive director of the Center for HIV Law and Policy, the first nationwide legal resource and strategy center for people with HIV and their advocates. She has an encyclopedic knowledge of HIV and the law. We're honored to have her as our guest for This Month in HIV. Welcome, Catherine, to This Month in HIV.

Thank you, Bonnie. Glad to join you.

If someone with HIV does not disclose to a sexual partner that they are HIV positive, even if they have protected sex, what are the laws? Is there a federal law about this? Or is it state by state?

There are currently, I would say, about 24 to 27 states -- of course, that can vary, depending on the month and what state legislatures decide to do -- with state laws that specifically criminalize certain behaviors when people with HIV engage in them.

In addition to those specific laws, of course, every state has a criminal code that prohibits violent crimes, from attempted murder to assault. Then there is a third group of laws, many of which have been in existence since the early 1930s, that will make it a crime if someone with a communicable or infectious disease exposes another person to that disease.

So there are, at least in theory, multiple ways that people with HIV can be and, in fact, have been prosecuted. But again, your risk varies from state to state.

"From ... 1986 to 2001, there have been 316 known HIV-related prosecutions [in the United States]. However, the conviction rate on those prosecutions has been pretty high, around 80 percent."

From the period between roughly 1986 to 2001, there have been 316 known HIV-related prosecutions [in the United States]. However, the conviction rate on those prosecutions has been pretty high, around 80 percent, which is certainly considerably higher than prosecutions in other categories.

Unfortunately, a significant number of those prosecutions deal with low-risk behavior. A significant number of those prosecutions have targeted people who are already politically unpopular, such as sex workers. And, a very significant percentage of those have also targeted people of color, particularly when the supposed victim was someone who is white.

Can you give me some examples of these prosecutions?

Some of them range from the ridiculous to the tragic. There are individuals who have been successfully prosecuted for supposedly spitting at someone who is a member of the criminal justice system -- whether it's a corrections officer or a police officer, this carries a higher than average risk that you will be prosecuted.

There was an individual [named Greg Smith] who was prosecuted and convicted and sentenced in the late 1980s in New Jersey, for allegedly biting a corrections officer. He received a 20-year sentence for attempted murder, even though the virus was not transmitted, and even though there were numerous facts suggesting that the inmate had not attacked anyone, but had been assaulted, and the prosecution was a product of a cover-up of that activity.

Have there been recent cases similar to that? Or was that a reflection of the paranoia of a long time ago?

I wish it was a long time ago. I think a lot of people here in New York, where we're having this conversation, may remember an individual named Nushawn Williams in upstate New York, who was prosecuted for allegedly transmitting HIV to a number of young women who, it should be mentioned, were white. [For more on this case, click here.] Basically, the knowledge of his relationships was a product of his voluntarily providing a lot of information during partner notification activities.

As I mentioned, a lot of these cases have involved low-risk activity. One prosecution that got a fair amount of press back in the 1990s involved the prosecution of a female sex worker based on the allegations of an older gentleman, who claimed that he was attacked and bitten by the sex worker in the course of a robbery. [For more on this case, click here.] The sex worker said that, in fact, this gentleman was a client of hers, and was basically accepting services and refusing to pay for them. She was successfully prosecuted for assault.

I think that case and the majority of these HIV-related prosecutions demonstrate that they are rooted in very significant differences in views and values related to drug use, sex, gay sex, sex work ... and the clash of those values.

So most of the prosecutions happen in that world -- whether it's among very poor people, or marginalized people. Have there been cases of wealthy people being prosecuted?

I'm not aware of any. There have been a number of prosecutions in the context of the military. I think what one can say about these prosecutions is that, if the criminal law was an effective tool of HIV prevention, and if in fact it served that purpose, then it would have to stop or deter the behavior of people who are responsible for the major proportion of new cases. Which means that those behaviors which are most responsible for spreading the virus -- voluntary sex and needle sharing -- would be affected by criminal laws. In fact, there is absolutely no evidence that that happens.

The behavior that most people accept as wrong, and perhaps even appropriate for criminal law penalties -- someone deliberately using HIV, or trying to use HIV status, as a tool to harm or terrorize somebody else -- is in fact extraordinarily rare, and is certainly not a significant factor in HIV transmission rates.

The behaviors that do drive the epidemic, which I mentioned are voluntary sex and needle sharing, are difficult, if not impossible, to prohibit and control. If these laws and these prosecutions were really intended, as their proponents say, to stop or slow the spread of HIV, then there would be some attention, or certainly more attention, to whether or not transmission actually occurs. But in the overwhelming number of prosecutions, there was no transmission.

"In many of the state laws, whether or not transmission occurs has nothing to do with the elements of proving a crime."

In many of the state laws, whether or not transmission occurs has nothing to do with the elements of proving a crime. Only a small handful of the roughly 25 states that have HIV-specific criminal laws actually require that the prosecutor show that the person intended to infect someone in order to get that conviction and send somebody to jail.

So, basically, what is being targeted is the sex lives of people with HIV, and the addiction of people with HIV, regardless of intent, regardless of whether they use protection. As I may have mentioned, only two of all of these laws make any distinction between protected and unprotected sex as an element of a crime, and whether you will wind up in prison. Only half of them make informed consent an affirmative defense to a prosecution.

When you say affirmative defense, what do you mean by that?

What that means is that if the person being prosecuted can turn around and prove that the person with whom they slept or shared a needle knew of their HIV status, knew of the risk that sleeping with someone with HIV poses, and then consented, then and only then can they raise that as a defense. But again, the burden is on the person who is being prosecuted, and that is available as a defense in fewer than half of the states that have HIV-specific laws.

Why is it only available in half?

I can venture a guess. I think it is because, again, what's being targeted is not a real public health problem -- which is people engaging in activities that expose them to infection without protecting themselves, regardless of what they know about their status -- but the notion that people with HIV should not be having sex, should not be sexually active.

In illustration of that, there are a couple of different states that we can look at. One state that I think proves that point is Illinois, where their statute makes the knowledge of infection and the engaging in intimate contact with another in and of itself a crime.

Explain that in real-person speak.

What that means is, if I am a woman in Illinois and I am HIV positive, if I get pregnant, that pregnancy, that fetus, could be evidence of criminal activity. It doesn't matter whether the other person knew [my HIV status]. It doesn't matter whether the partner willingly engaged in the act of impregnating me, knowing the risks and benefits. The fact of that pregnancy would make me a criminal in Illinois. Another example: If I were a gay man and I engaged in a relatively low-risk activity -- oral sex with a condom -- and no transmission occurs, I still am a potential felon.

Because you have HIV?

"If you are extraordinarily sexually active and engage in every imaginable kind of risk, but do not get tested, you are not likely to be liable, because you do not know that you are infected. So most of these statutes actually reward ignorance."

Because I know that I am infected. The focus is on people who have gotten tested. If you are extraordinarily sexually active and engage in every imaginable kind of risk, but do not get tested, you are not likely to be liable, because you do not know that you are infected. So most of these statutes actually reward ignorance. They penalize getting tested. You are generally only going to be subject to prosecution if you have been tested and know that you are positive.

How is that proven?

By the record of an HIV test result.

Meaning the record. If you go for a "confidential" test at a doctor's office, they could ask to see that?


Without your permission ... they could do it legally?

In most states, if there is a court order. In many states, if there were simply a request or a subpoena for it, that information would be turned over.

The allegation would be that this person knew, or should have known, that they were HIV positive. In fact, that was done in the case of Nushawn Williams. The Department of Health, apparently with very little consideration about it, turned over all sorts of confidential information about Nushawn, certainly not with his consent or with even his knowledge or prior notice.

Are Illinois and New York considered good states for this?

No. I would say Illinois is one of the worst. California has perhaps the most rational version of an HIV-specific law. In California, in order to be convicted, a person with HIV who knows that he or she is HIV positive must first engage in unprotected sexual activity without disclosing status, and with the specific intent to infect another person. Then, and only then, is that person guilty of a felony under California law.

Perhaps the advantage of the existence of that law in California is that it sets a fairly high standard. It targets only the knowing and intentional exposure of another person, with the specific intent to infect that person -- conduct that we know is pretty rare, that we have reason to believe is pretty rare. The existence of that statute would preclude prosecution of that person under a more serious criminal statute carrying a higher penalty, such as a murder statute.

How is "intent" different than "negligence"? For example, is there a difference between somebody who is lazy and does not want to disclose, and doesn't care very much about other people, versus somebody who really just wants to kill everybody they come into contact with? Or is it just considered intent if you don't disclose and you have unprotected sex?

That's a good question. Under the general criminal law, you have specific intent, and you have laws under specific intent, and then there are criminal negligence laws, where the person knew, or should have known, that by engaging in a particular series of acts or conduct, that he or she is exposing another individual to a serious risk of death, or serious bodily harm.

So, an example of that kind of law would be through vehicular homicide, where someone may be extraordinarily drunk, or driving their car in a manner that they know is placing people at risk, but isn't actually driving with the intention of murdering everybody in their path ... and yet may, through that negligent behavior, cause the death of people or a person.

But a lot of these HIV laws were passed because some politicians and prosecutors were frustrated by the requirement under the criminal law that you show that someone actually intended to do some harm, or behaved in a negligent manner. Generally, that's difficult to prove, especially if somebody is being sexually active, but used a condom.

Remember, as I mentioned earlier, that actually using a condom and trying to prevent transmission is, in most of the states, not a defense to prosecution. So the creation of many of these laws was an attempt to legislate away the requirement in most criminal law that you demonstrate some kind of specific intent or significant negligence.

"Someone who is very informed about HIV, and knows, for example, that the risk of transmission is less than 1 percent, even without protection, and then uses protection, would really not be able to use that knowledge and that lack of intent to transmit as a defense under most state statutes."

For example, someone who is very informed about HIV, and knows, for example, that the risk of transmission is less than 1 percent, even without protection, and then uses protection, would really not be able to use that knowledge and that lack of intent to transmit as a defense under most state statutes.

But in California, that person would be able to use that as a defense.

In California, yes. Absolutely, in California. That would be totally irrelevant in Illinois.

Where you're kind of guilty before proven innocent.

Oh, you're just guilty. If you have HIV and you had sex ... that's pretty much all that the law requires for a conviction in Illinois.

I see. So, of the 24 states, are there other states that you could just sort of rattle off, to warn people about certain activities there? Is it the usual states? Is it the South and all the red states, versus the blue states?

No. It doesn't necessarily play out that way. If I were going to warn somebody, I would warn them not to be HIV positive and a person of color, having sex with a white person when somebody's trying to run for elected office.

The pattern in prosecutions is, again -- and I really can't emphasize this too much -- there isn't any apparent connection between prosecutions, and the publicity surrounding them, and an actual threat to the public health. There does appear to be a connection between a prosecutor's desire to showboat and to get free coverage for being tough on crime, and tough on all of the marginalized people that are associated with HIV. Tough on gays, tough on people of color, tough on people who are sex workers, and use drugs.

We had a listener write in to us. She was in a long-term, monogamous relationship with a man, and they were having unprotected sex. She was on the pill. She went for an HIV test with a friend and found out she was positive, and then later discovered that her boyfriend had not told her he was positive. When she confronted him, he said, "Well ... oh, well. Too bad." So what kind of recourse does someone like that have? Should she do something? She said she wanted to do something to protect other people out there.

If she wants to protect other people, if that is her goal, then the most effective thing that she could do would be to write about it, get involved with community service organizations, particularly organizations dealing with and doing outreach for women, and emphasize the foolhardiness of hinging your self-protection on what someone else tells you is safe and taking precautions based on what you think you know about someone else's sexual activity.

Here is someone saying that she was in a monogamous relationship, and that apparently is not true. Without trying to tease apart all of the different elements of her particular situation, and what other facts are there, the message, the takeaway message, is that as adults, we need to take responsibility for our own health. We need to empower other women to take charge of their own health, and not depend on some man to protect them.

Good advice. But in a place like Illinois, she'd have an easy case.

You indicated that she was looking to try to protect other people. If she wants revenge, there are things that she can do that carry the risk of criminal prosecution ... like getting a gun and shooting him. Or she could run to the local prosecutor, and she could further entangle herself with this person by trying to get him put behind bars. But that doesn't do anything to help anybody else.

Can a person prove that someone infected them by HIV strain, or some other biological way?

I'm a lawyer and not a scientist or a physician. From what I understand, you can show that the transmission occurred from somebody in a particular community. But you certainly can't show, you absolutely can't show, the direction that a virus traveled in: whether it traveled from the person who has been accused of a crime to the person who was the alleged victim, or whether it actually traveled in the other direction, or whether the infection occurred from somebody who lives a mile away or in the next county.

When you say "community," how big is the community? Is it like all of New York City, for instance, or is it smaller than that?

As I said, I can't really answer that. I don't think I'm qualified to answer that question, except to say that you cannot prove the direction in which a virus travels by existing technology.

Plus, it's still beside the point. I guess the issue is, if this is a discussion about how to get revenge, that's one thing. That's not my focus. That's not what the Center for HIV Law and Policy does, or really a relevant topic, if we're interested in public health.

If, in fact, these laws were based in public health, and served the public health, and were a response to public health concerns, there would be some connection between the statutes and impact on risk behavior, or at least some interest on the part of people who pass them as to whether these laws have had an impact.

I don't know of a single situation in any state where there has been attached to these bills a legislative directive that the effectiveness of the criminal law be assessed so that the issue can be reevaluated. There's also no attention to, or concern with, whether these laws have an unintended negative consequence.

Articles on HIV and the Law


The ACLU AIDS Project
If you want to view first-hand some of the more shocking cases of HIV discrimination, this is the place to go. You'll find news about important cases the ACLU is fighting and information about the rights of people with HIV.

The State of HIV Stigma and Discrimination in 2007
A quick summary of HIV discrimination in the United States and HIV discrimination cases Lambda Legal has fought.

Resources on Legal Issues Related to HIV
A collection of documents on HIV and the law created by the HIV Law and Policy Center. The most important court cases on HIV are listed here. Beware of legalese.

Laws on HIV Transmission

Criminal Statutes on HIV Transmission in the United States
Although not updated since 2004, this overview of criminal laws on HIV transmission in all 50 states is the best summary of U.S. HIV transmission laws available.

Criminal, Deliberate and Reckless HIV Transmission
This article by the U.K.-based HIV charity AVERT offers an international perspective. It explores the ethics of punishing people for transmitting HIV and looks at some of the most significant trials from around the globe.

HIV Transmission Cases
An eye-opening, but by no means comprehensive, list of cases where people with HIV were prosecuted for exposing others to the virus.

HIV and Criminal Liability
A nuts and bolts explanation of Louisiana's HIV transmission law. Though the article only discusses Louisiana law, its explanation of how people with HIV can (and can't) protect themselves may be helpful to people with HIV in other states. (A small PDF file.)

HIV Testing and Privacy

Policies on Reporting HIV Test Results
A collection of articles about the privacy of HIV test results.

HIV Anonymous/Confidential Testing, as of May 2007
A list of which states offer anonymous HIV testing and which states always record a person's name along with the HIV test result.

HIV Name Reporting, as of May 2007
A list of which states report HIV test results with a code and which use names.

Your Rights in the Workplace

Your Rights and Responsibilities as an HIV-Positive Employee
Simple, practical advice about the rights people with HIV have on the job and what they need to do to protect themselves.

Explanation of the Americans With Disability Act
This article is a good introduction to the Americans With Disability Act for someone who just wants the basics.

HIV in the Workplace
Clear and concise answers to questions about how to handle HIV on the job. Ever wonder if the health insurance company can tell your company that you have HIV or whether to tell your boss your HIV status? Find answers here. (This is a large PDF.)

HIV and the Law
The U.S. Centers for Disease Control and Prevention prepared this overview of federal laws on HIV for employers. Though long and technical, it spells out all the nationwide rules about privacy and discrimination in the workplace.

Legal Issues in the Workplace
A collection of articles on legal issues that people with HIV who are working or seeking a job may face.

The Americans With Disability Act of 1990:

"No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of an employee, employee compensation, job training, and other terms, conditions and privileges of employment."

Do you think they do?

I do think they do. To the extent that people are aware of them, or that they hear about these prosecutions, where the person with HIV is characterized as the local AIDS monster or boogeyman, it certainly doesn't do anything to reduce the stigma of being tested and being open about your HIV status. In fact, it does exactly the opposite. What it reinforces is that having a record of being tested could be really dangerous. Because if you're HIV positive, and even if you disclose to somebody with whom you then break up with, and who gets vindictive and decides to revise history to the point where all of a sudden you didn't disclose, you can be criminally prosecuted.

But, again, only in certain states.

Well, actually, that's not necessarily true. Remember again, Greg Smith was prosecuted in New Jersey for attempted murder. He wasn't prosecuted under an HIV-specific law. He was prosecuted for attempted murder and he was convicted. He got a 20-year sentence, although what he allegedly did was fight a corrections officer, even though no transmission occurred and he did, in fact, die in prison. Not for nothing should it be noted that Greg was black, and that the corrections officer he allegedly bit was white.

It's been quiet, at least in New York. There haven't been any big, public cases in the last couple of years. Is it just not being covered by newspapers anymore, but it's still occurring? When I heard about these teens in prison in Florida, I was sort of shocked. I wondered how many people are in prison for not disclosing in the United States? Is anyone keeping count of how many people are in prison for HIV-related prosecutions?

I wouldn't say it's impossible; it would take resources to track it. The study that I mentioned that looked at how many prosecutions there have been had a nice grant to focus on that. But we typically hear of these prosecutions if somehow the press hears about it, and it's salacious enough to devote some column inches to it. But because we're not reading about it doesn't mean that it's not happening, any more than the fact that we don't read about disclosures of HIV by this or that public health department necessarily means that it hasn't happened, or it doesn't happen.

These laws are still on the books. They are still out there. Whether or not these things get dusted off depends on a confluence of different factors. Most typically, they tend to be: Who was the alleged victim? Who is the alleged perpetrator? Where is this occurring? Is race a factor? Is class a factor? There are a variety of different factors. One of the factors is not: Is this a major public health event that deserves media attention? Never is that a factor -- almost never is that a factor.

We're talking about a completely preventable disease. Rarely are we talking about actual assault or rape. Overwhelmingly, these prosecutions involve consensual sex.

I always thought it was very interesting that if a woman gets pregnant, they always blame the woman. But if a woman gets HIV from a man, they'll blame the person with HIV.

Again, that depends, doesn't it? I don't think there was much press coverage of this, but one of the women whom Nushawn Williams allegedly infected subsequently became pregnant by another man. I don't know what happened to all the women that were involved, but at least one of them subsequently became pregnant by another man. So what was the lesson that came out of that? Certainly, "protect yourself" wasn't one of the lessons. These were all young women that nobody cared a whole lot about before this whole incident hit the papers. There was a flurry of attention and talk show hosts wanted to have them on and have them talk about this horrible exposure to this monster. Then nobody cared about them again, and that was the end of that. Most of these young women were sexually active before, and they continued to be sexually active, and got pregnant. So what was accomplished, other than putting a young black man behind bars for a longer period of time?

I want to go on and ask you a bunch of other questions about disclosure that have been posed by our listeners. Can you legally be fired for having HIV?

No. The question is: Can you be fired without having legal recourse? Generally, no. If the reason is only that you have HIV, the general answer is no. But have people lost jobs because they are HIV positive, and then subsequently lost their lawsuits about it? Absolutely.

If a health care worker is discovered to be HIV positive and has been fired as a result -- even though you would think the Americans With Disabilities Act and other anti-discrimination laws would prohibit that -- in fact, those people generally lose their lawsuits to get their jobs back. [For more information on these laws, click here.]

There have been cases where it's clear that a person was fired because they had HIV, and yet courts have accommodated the defendants' tortured explanations for why that person was fired. Federal courts have upheld the firing of someone who is HIV positive and was cleaning lettuce in a supermarket, buying the argument that if this person was cleaning lettuce and bled on the produce, it posed a sufficiently significant risk to justify firing this person as posing a direct threat. So there are laws intended to protect people, but unfortunately, the application of the law relies on judges who frequently are no more rational or informed about HIV than the paranoid employers who fire people with HIV.

So, do you have a cause of action? Might you sue? Yes. Do people get fired and wind up not suing? Yes. Why? Because it involves finding someone to represent you, being willing to commit to generally anywhere from many months to years to getting either some kind of compensation for your job loss or the return of your job, and there isn't a guarantee that you will be successful. I think the law isn't as neat and clean a solution to stigma and discrimination as many of us wish, or would like to think, that it is.

You mentioned health care workers before. Isn't it true that it is only health care workers who are required to disclose their status?

Health care workers aren't even required to disclose their status in most states.


Surgeons are not required to disclose their status in most states. Most states -- not all, but most states -- have adopted policies that would require that an HIV-positive health care worker who engages in activities that may transmit the virus consult with a hospital-based committee to review whether any kind of restrictions on practice need to be imposed.

But generally speaking, it's not a required disclosure. A physician in New York is not required to disclose her or his HIV status, regardless of what kind of practice they have, and there isn't any medical or scientific reason for that person to disclose their status.

Similarly, it isn't required for a babysitter, for instance, to disclose their status?

Goodness, no.

If somebody helps people bathe, or administer medications, it's not required, as well?

No. Again, I believe there are one or two states that require some disclosures of health care workers, but that is not the rule of thumb. Again, those individual states have different laws. So it's really impossible to give sort of a blanket statement about that. But as a general matter, there is not a requirement to disclose in the employment setting.

A lot of people who come to our site have a lot of questions about that. They are worried about becoming nurses, that they won't get into nursing school.

Well, that's a different matter. That doesn't mean that it's legal. But it has happened that there are a number of states that still have on their books prohibitions against individuals with infectious disease or communicable disease becoming masseurs, or barbers -- a variety of different trade schools. The origin of some of these state provisions is HIV specific. The overwhelming majority of them are not. Their origin is to make sure that when you're getting your haircut, it's not by someone with tuberculosis -- that makes some sense.

But these laws have been interpreted by some training schools, and some licensing authorities, to exclude people with HIV, in settings in which there is absolutely no relevance of that, because a person's HIV status does not pose any kind of a risk whatsoever in the profession that they have chosen. That certainly should include health care workers. It should include nurses. It absolutely, without even discussion, should include someone who is attempting to employ themselves giving massages, or being a beautician.

If a prospective employer asks you if you're HIV positive ...

It's illegal. Under the Americans With Disabilities Act, if you are simply being interviewed for a job, it is illegal for someone to ask you questions about your disability, much as it is, under different laws, illegal to ask you about your religion, and so on. Once you have a job offer -- once somebody says, "OK, you're qualified for the job; you've got the job; we just have some questions" -- the questions are acceptable only as long as they are asked of everyone who is applying for that particular job -- or that type of job, with similar job qualifications. Then, once you're employed, those kinds of questions are acceptable, as long as they are relevant to your job.

"Under the Americans With Disabilities Act, if you are simply being interviewed for a job, it is illegal for someone to ask you questions about your disability, much as it is, under different laws, illegal to ask you about your religion, and so on. Once you have a job offer -- once somebody says, 'OK, you're qualified for the job; you've got the job; we just have some questions' -- the questions are acceptable only as long as they are asked of everyone who is applying for that particular job."

If they already have the job, then the information has to be maintained confidentially, and it has to be something that is asked of everybody that comes in. It has to be a consistently asked question, and it cannot be used to then take the job offer back.

But isn't it dangerous in that situation to reveal your status? And, is it necessary?

Well, there are certainly risks, and people don't like doing it. On the other hand, if you already have a job offer and then, all of a sudden, the job offer goes away, you will have fairly powerful proof that the job went away because of your HIV status. Basically the reason that the law and the implementing regulations for the Americans With Disabilities Act allows certain questions, after you have a job. Once you have already received the job, it would be impossible for somebody to dismiss you on the basis of qualifications, because those have already been established. Those kinds of questions are not permissible in the course of an interview, and before you have a job offer, because it would be too easy for someone to then not offer you the job, for reasons that are discriminatory, based on your disability.

If you are working for a company and you are insured by them, could they see what medications you're taking and fire you for that? Or is there some protection against that?

If the company is self-insured, and the program administrator is also related to the company, it's possible that they will see that, yes. But they are required to maintain the confidentiality of that information.

How would you know if they were self-insured?

You can ask. It's not always immediately obvious, because sometimes employers will have an insurance company serve as the administrator of a plan.

I see. But they are required by law to maintain your confidentiality.

It depends. It is possible in some settings that an employer, at an administrative level, will have access to that information in a very broad way. But they are prohibited from disclosing that information. They are required to maintain the confidentiality of it.

As a general practice, that information is confidential, and generally employers do not have access to that.

What is somebody's recourse if any of the following things happen? If their ex-lover sues them for having unprotected sex with them? If their employer fires them? What are people's options?

If you're talking about a disgruntled former partner or lover, it depends on whether it's a criminal case or a civil case. Unfortunately, you're going to need to get a lawyer. What your options are depends on whether you have money or not. But one thing that you can do is go to the Center for HIV Law and Policy's Web site, and go to our resource bank. Then, under the listing for "Legal Services -- Finding a Lawyer," you will see links to different listings of lawyers and agencies that specialize in HIV. [To download a PDF of these resources, click here.] I think, in a criminal prosecution, your first priority is to get a good criminal lawyer. Your second priority is to make sure that your criminal lawyer also knows a lot about HIV or is working closely with someone who knows a lot about HIV, such as a lawyer from the HIV Law Project here in New York, or the ACLU [American Civil Liberties Union], or AIDS Legal Council of Chicago. Those kinds of agencies are excellent at providing backup to a criminal defense lawyer.

Since those cases are relatively rare, if you're talking about employment discrimination, there are a variety of organizations here in New York: Gay Men's Health Crisis, the ACLU, Lambda Legal and the HIV Law Project. And then, a variety of legal service organizations may be able to help you. It depends on the type of case. The larger organizations, such as Lambda Legal and the ACLU, are not direct service organizations. They represent individuals on cases, if it is consistent with their agenda to develop a particular area of law. But there are both HIV-specific organizations and legal service organizations that may be able to help you.

Is this across the country, or just in certain states?

Unfortunately, there are roughly 26 states that do not have a single dedicated HIV legal service organization of any kind. In those states, it's a problem. That again is another reason why, if somebody loses their job, they may not sue about it. Getting representation on an employment discrimination case is not easy, and many lawyers will not take the case for someone who has a relatively low income, because the cost of doing that case will not be matched by the kind of financial recovery that you can anticipate if you win. If you worked at McDonald's, the compensation that you will get for six months of lost wages may not be enough to cover the cost of your lawyer, and the cost of doing the kind of pre-trial work that's necessary to make a case.

So there's little free legal help, really.

There is free legal help, but I would say that the need for those kinds of legal services far outstrips their availability. Lawyers such as I focus on trying to avoid litigation. It's frequently non-lawyers who look to lawyers and the law as the first way to solve a problem. "My boyfriend didn't tell me he was HIV positive. How can I get him in court?"

I think in many cases the wheels of justice grind exceedingly slowly. The goal is to avoid litigation altogether. The goal is to avoid losing your job. Thus, I think the focus then should be on ways to avoid those kinds of predicaments. One way one does that, as an HIV-positive employee, is being reliable. If you think there is going to be a problem, make sure you get on record, before that problem occurs, the employer's knowledge of your HIV status. So, in other words, if you believe that people know about your HIV, and you believe that there may be an ignorant response to that information, what you want to make sure you do is confirm that that person knows.

"I have seen employers who may have no problem with someone's HIV status, per se; they just may have problems when that person needs an accommodation. This is a problem that people with other disabilities encounter. It's not always bias. It's not always fear of HIV. Sometimes, it is an unwillingness to be flexible, a fear of the inconvenience or the cost that accommodating the person with disability may pose."

A frequent defense, when someone is fired for discriminatory reasons in which HIV is involved, is that the employer will say, "Well, I didn't know. I didn't know about this person's HIV status." Or, "It was related to job performance."

So, recordkeeping is really important. Documenting and keeping a written record of exchanges and performance is very important for somebody with HIV -- for somebody with any disability, if they fear that there will be a negative job action, based on bias.

For example, one thing that somebody might do, if they have had a positive exchange, is send an e-mail to their employer saying, "Thank you for meeting with me. Your positive feedback means a lot to me." Or, "I'm glad that you were so satisfied with my work." Those kinds of things are good things to document if you're in an employment situation and you're worried about future bias, should you need a little extra time because of a doctor's visit, or should your health situation change, and you need an accommodation.

I have seen employers who may have no problem with someone's HIV status, per se; they just may have problems when that person needs an accommodation. This is a problem that people with other disabilities encounter. It's not always bias. It's not always fear of HIV. Sometimes, it is an unwillingness to be flexible, a fear of the inconvenience or the cost that accommodating the person with disability may pose.

The best defense is an anticipatory defense ... not necessarily an offense. And that is keeping a record. Making sure that you document good performance, good feedback, positive reception of your work. If you're not doing your job, HIV will not protect you from a negative job action. If your job is being a receptionist and you do a terrible job answering the phone, the fact of your HIV is not going to protect you from a negative job action. All the anti-discrimination laws protect people who are capable of doing their jobs from being removed from their jobs for unfair reasons related to their disability.

Thank you, Catherine. That was great advice. I've afraid we have run out of time. Thank you so much for taking the time to talk to me.

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Legal Assistance for People With HIV in the United States

Many groups offer legal assistance to people with HIV. Here are a few ways you can get help:

Nationwide Resources

Directory of Legal Resources for People With HIV/AIDS
A listing of U.S. organizations dedicated to offering legal aid to low-income people with HIV. (This is a large PDF.)

Legal Aid Societies
A listing of legal aid societies across the United States. Their goal is to help or advise low-income people with legal problems.

HIV Organizations
A state-by-state listing of HIV/AIDS organizations, some of which offer legal services or referrals.

National Organizations

American Civil Liberties Union (ACLU)
The ACLU is the country's most influential civil rights organization. To request assistance, contact one of the organization's local affiliates. However, the organization only takes on a few cases involving HIV each year.

Lambda Legal
A gay, lesbian and transgender rights group that also fights for the rights of people living with HIV. It answers legal questions, represents some people and helps others find legal representation. You can call your local chapter to request representation or ask a question.

Local Organizations

AIDS Law Project of Pennsylvania (Philadelphia)
Offers free legal advice, advocacy and representation to HIV-positive people with low incomes.

AIDS and Civil Liberties Project (Illinois)
Aims to end discrimination against HIV-affected people in Illinois by focusing on a few, select cases.
You can report HIV-related discrimination and ask for help from the AIDS and Civil Liberties Project through this secure online form.

AIDSLaw of Louisiana
Provides free legal services to low-income people infected and affected by HIV. Its Web site also offers articles on laws in Louisiana that affect people with HIV.

AIDS Legal Council of Chicago
Provides free legal services to people with HIV in Cook County who cannot otherwise afford legal representation. Services are offered in both English and Spanish.

AIDS Legal Referral Panel (San Francisco)
Provides free and low-cost legal assistance to low-income people with HIV in the San Francisco Bay Area.

The Capital Area AIDS Legal Project (Austin)
Provides free legal assistance to low-income people with HIV.

The HIV Law Project (NYC)
Provides free legal services to low-income, HIV-positive residents of Manhattan and the Bronx and homeless New Yorkers.

HIV & AIDS Legal Services Alliance (Los Angeles)
Provides free legal services to low-income people with HIV. Services are offered in both English and Spanish.

AIDS Network (Madison)
Provides advocacy and legal information to low-income people affected by HIV in southern Wisconsin.

AIDS Outreach Center (Dallas)
The center's legal services department assists clients with legal issues related to employment, housing and medical benefits. When necessary, the center can refer people to volunteer attorneys and paralegals.

Gay Men's Health Crisis (New York)
Lawyers, paralegals and advocates at Gay Men's Health Crisis (or GMHC) offer advice and run legal workshops. GMHC also maintains a list of groups throughout New York state that offer legal help to people with HIV:

Pittsburgh AIDS Task Force (PATF)
Attorneys at Pittsburgh AIDS Task Force offer legal information, referral services and representation. PATF assists in the preparation of wills, living wills, powers of attorney, Social Security appeals and discrimination cases.

Whitman-Walker Clinic (Washington, D.C.)
Staff attorneys and volunteers at Whitman-Walker offer legal services to low-income people with HIV.

This article was provided by It is a part of the publication This Month in HIV. You can find this article online by typing this address into your Web browser:

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