From cybersnooping to governmental efforts to compile dossiers on everybody, privacy rights are under attack. With seemingly everyone being outed for something, people with HIV and AIDS are particularly vulnerable to having the information in their personal medical records used against them.
In a four-part series that began in the spring and will run over the next several months, writer Robert Vázquez-Pacheco explores the many issues surrounding the confidentiality of medical records for people with HIV and AIDS. This month's article discusses the special privacy issues of special populations with HIV -- prisoners, children and adolescents, especially homeless young people. Part I, published in May, discussed the laws governing the confidentiality of medical information -- what they are, who is allowed access to the information and for what, and attempts to limit or circumvent PWAs' privacy rights. Future installments will deal with medical records confidentiality in the context of the workplace and insurance, and with PWAs' legal and other recourses and patients' rights in general.
All information is valuable to somebody somewhere. Medical information about an individual's health is one of the most valuable types of information, its value determined by who wants it and for what. For example, insurance companies want medical information about people so they can predict how much they may have to spend on them. Pharmaceuticals manufacturers want to know how many people suffer from a particular condition so they can decide how much to charge for the drugs those people need. But sometimes the value of medical information is based more on the consequences of its disclosure; who has that information is sometimes more important than what the information actually is. Take HIV serostatus. Information about a person's serostatus often has serious consequences, particularly for the person who is HIV-positive. Those consequences depend on the individual's circumstances.
Now, as discussed in an earlier article in this series, legislative measures are in place to protect HIV-positive people from unwarranted disclosure of their medical information. But these measures, despite their good intentions, can offer only limited protections. As in life, problems arise through many complex and unforeseen circumstances. No law can predict everything that may happen, nor can it protect us from all of the possibilities. At best, it might guard against the more flagrant, predictable, or egregious violations, and only when those responsible for enforcing the law know what's happening. "There's the law and then there's real life," as a lawyer friend of mine said, meaning that sometimes the law can't totally protect an individual against what really happens.
We can see this in the case of two groups of HIV-positive individuals who remain acutely vulnerable to the negative consequences of serostatus disclosure, the incarcerated and the young, particularly homeless and runaway youth.
There was recently a statistic in the news about incarcerated people, something I read in an e-mail awhile back and then heard from a colleague at the Osborne Association. I also just heard it again on Oz, the popular TV soap opera about a men's prison. It's this: Currently there are approximately 8 million people incarcerated worldwide, and one-quarter of them (that's 2 million people) are imprisoned right here in the old land of the free. (The majority of them are black men, but that's another article.) According to the New York State Commission of Corrections, as of March 2000 there are 101,199 citizens in Empire State prisons. One advocate said that his agency "guestimates" probably around 10,000 of these inmates are HIV-positive.
Your rights as a citizen are hard to keep in prison, no matter what the law says. This is especially so when it comes to your right to privacy, and that includes your right to confidentiality as an HIV-positive person. Opportunities to break confidentiality abound in regular life -- I mean life outside jail -- so imagine how they multiply in the small enclosed world of prison. One prison advocate says that breaches of confidentiality are based on expedience, not necessarily maliciousness. In other words, they happen because people are trying to do something, maybe something good, or maybe something part of their job, and they are not being as careful as they should be. Of course, given a system that has gone from holding rehabilitation (remember that?) as its goal to one that is based on notions of retribution and punishment, one has to wonder.
According to the law in New York State, only authorized staff members of the Division of Parole, the Division of Probation and Correctional Alternatives (including local parole boards), the Commission on Correction, the Department of Correctional Services, state correctional facilities, the Division of Youth, and the medical directors of local correctional facilities are supposed to have access to HIV information. Not to mention the courts. That still makes for a helluva lot of people who aren't supposed to know. One prison advocate told me, "In theory, the laws of confidentiality are kept."
But, ironically, the two main populations within the prison system who are not authorized to know are actually the ones who do know, and their knowledge has the most immediate impact on an HIV-positive prisoner's life. I am talking about the inmates themselves and the corrections officers, the guards. Both officers and inmates gain access to this information in various ways: They overhear conversations. They actually see medical records. They do a Sherlock Holmes and figure it out by observation and deduction -- elementary, my dear Watson! People everywhere have conversations they shouldn't have in front of or within earshot of others. Medical personnel or inmates can unwittingly disclose something when a guard or another inmate is present. Or medical staff can tell a guard in passing, by saying something like, "Listen I gotta get so-and-so to take his HIV medication." Officers regularly accompanying inmates to see the medical staff may hear or see all sorts of stuff they're not supposed to.
Medical records are supposed to be kept safe from unauthorized eyes. But that doesn't always happen: Sometimes a chart in use is left lying around an office and an officer or inmate might read it. When inmates are being transferred from one facility to another, their medical records go with them. Those records are supposed to be sealed, but often they are not. For instance, a summary chart may be attached to the cover of the "sealed" chart, so anyone seeing the chart can figure it out. Or charts may be coded in a particular way to denote HIV; again, folks can figure it out. The person simply carrying a chart in plain view through a prison or, if it's a transfer, through two facilities may essentially be carrying a billboard. Records can be erroneously released to others. One advocate told me about a case in 1997 where the names of members of an HIV support group were publicly posted (unintentionally, he assumed), a list for unauthorized people to see.
The medication schedule of inmates on protease inhibitors is hard to keep private. In prison, a heightened sense of awareness increases your chances of surviving your time inside. So generally everybody, guards and prisoners, is hyper-aware of who is doing what. Folks who publicly go to the infirmary regularly for whatever reason attract attention. Whether it's twice or thrice daily, it doesn't take a rocket scientist to figure out why Juan or Maria keeps going to the infirmary, especially when he or she isn't talking about it. Some HIV-positive inmates need translators when dealing with the medical staff, and these people might then share what they learn with others.
The way prisons are set up isn't conducive to confidentiality of any kind. It's not supposed to be. For example, inmates who are put in disciplinary segregation for violating a rule are put into what are called "S-blocks," where two people are put in a double cell. They are together almost all the time. There is no way you can hide either your medications or their side effects (diarrhea from various meds, nightmares from Sustiva, the protease gut, etc.) from someone who sees you all day every day.
So what are the consequences of these breaches of confidentiality? Back in the day, HIV-positive inmates were subjected to countless forms of discrimination, anything from threats to insults to isolation to physical attacks. Despite the rather limited extent of HIV prevention efforts in prisons, (remember, they still don't pass out condoms in prisons -- no need to, the theory goes, because folks there don't have sex; it's against the rules) at least the early anti-AIDS hysteria seems to have died down somewhat. That doesn't, however, make a prison term into a lunch at GMHC. Of course, people still can get treated badly. No matter what anyone says, once a person learns of another's positive serostatus, how that person deals with the pos inevitably changes, whether the person is a peer or someone in a position of authority. Sometimes it improves . . . and sometimes it doesn't.
To my knowledge, there is no record of any corrections officer or medical staff person being disciplined for a breach of HIV-related confidentiality. But then it seems there are no serious efforts to enforce the rules. From talking with officials and advocates, I don't get the sense that guards are specifically trained on the ins and outs of HIV confidentiality. According to one advocate, corrections officers are simply told not to do it -- reveal confidential information, that is. Of course, given the reality of prison life, and given the possible consequences, who's going to register a complaint against another inmate or a corrections officer anyway? One advocate told me he tells clients to choose their language carefully, to register their "concern" rather than make a complaint. Perhaps more of us should register our concern about what happens to people in our prisons.
Another population with unique issues is minors. People 18 years and older are legally considered adults; I'm concerned here about young people below the age of consent.
The law says minors can legally consent to STD screening and treatment, HIV antibody testing and treatment, and reproductive healthcare, including pregnancy testing and abortion, without obtaining parental consent. So many HIV healthcare practitioners will allow an HIV-positive minor to consent to his or her HIV-related care and treatment, especially when the young person either can't or won't get parental consent. Information about the young person can be disclosed to parents only when the provider determines that the young person is incapable of consenting to his or her own HIV-related care.
Did anyone else hear alarm bells? Most of the providers and youth advocates I spoke to seemed pretty principled, but it makes me wonder about young people outside of New York City. Not that all youth service providers in New York City are models of enlightenment, but at least here a young person has more options than the kid who only has the pediatrician he or she has been taken to since the cradle. When the provider has to pull out a manual to figure out what the possible treatments for HIV are, something tells me that this person might not be too concerned with the delicacies of confidentiality. When the provider has a social or business relationship with the parents, she or he may not take the young person's fear of violence seriously. But that might simply be my prejudice. And let me say to young people right here that disclosing to your parents may not be a bad thing, depending of course on your parents and your relationship with them.
Minors in the foster care system face a different situation. If a minor is tested anonymously, the information remains anonymous. But when the young person tests confidentially, that information will go into her or his medical record and the foster care or adoption agency does have access to those records. The foster parents or potential adoptive parents cannot, however, disclose that information about the young person except for the purpose of getting the minor care or treatment or providing supervision. More alarm bells.
An additional problem arises for young people when they test confidentially. Confidential HIV antibody testing generates a bill, and that bill has to go somewhere so that somebody can pay it. Private insurance is a problem, since the bill needs a billing address. Fortunately, Medicaid patients never see the bill. Now some programs here in New York City are quite creative in dealing with this private insurance billing thing. Some have a fund that just pays the bill for the young person. Others do something a little more complicated, where the bill is eventually written off. Obviously, not all healthcare facilities function this way. Besides, all of this is tricky because the parents do have the legal responsibility to provide for the child, including healthcare. One advocate told me, "Ultimately, the family has to be informed." But when and how that happens is legally up to the young person and the provider.
The problems of unsupervised minors -- young people not living with their parents or legal guardians -- are different. As we all know, there are many kids out on the streets for a host of reasons. The National Network for Youth says that approximately 1.3 million youths run away from home every year. That's more than 3,500 kids a day, another interesting and statistical factoid about the home of the brave. A good many of these kids return home, but a good number also end up homeless on the streets, dealing with a host of problems like substance abuse, crime, survival sex, violence, and illness. Many have very good reasons for having left home. Some even stand a better chance on the street than at home (which is a really scary thought), and these are the young people at highest risk for HIV infection. Like the incarcerated, they are a population forgotten and considered generally expendable by society. Many of these kids are also gay and lesbian -- as are, by some strange coincidence, a sizeable number of the kids who commit suicide. Funny how these things interconnect, ain't it.
For unsupervised minors who are HIV-positive, it is difficult to get care. Not all unsupervised minors want to go into foster care, which is where they can be sent when discovered by healthcare professionals. Some have developed their own home situations with peers, or they are in relationships. Often these living situations are better than being at "home" with an uncaring or abusive family or out on the streets alone. Others prefer that situation or relationship, however messed up it might be, to being in foster care. Providers are legally required to call Child Protective Services when they are dealing with unsupervised minors. The law is so serious about unsupervised minors that providers are expected to detain the kid physically if necessary. The young person is then remanded to the custody of foster care services, which may be good or may be as nightmarish as being on the streets. So anytime an unsupervised minor comes in for treatment, he or she runs the risk of being reported and being sent back to the family the kid fled in the first place, or ending up in foster care. Once in foster care, the child's medical information is subject to the above-mentioned regulation.
One of the negative consequences of the breaches of confidentiality encountered by both the incarcerated and young people is that, in both groups, both at-risk individuals and the larger communities have become hesitant to test for HIV. People see what happens when they test positive, regardless of the condition of their physical health, and they decide it's better not to know. There are no assurances that their HIV-related medical information will remain confidential, despite the law, and so many choose the mysterious risks of remaining untested -- and consequently out of care and treatment -- rather than the known risks of ostracism, isolation, physical violence, and other negative consequences of possibly being positive.
I imagine it's a hard and frightening decision to make. It also speaks volumes to the rest of us about the state of HIV prevention services in disenfranchised communities. It speaks to the need for broader HIV prevention educational initiatives that would include all government workers who can possibly interact with HIV-positive people.
Another issue just coming over the horizon is the impact of New York's HIV Names Reporting and Partner Notification Act, which went into effect June 1. If some folks aren't testing now because of the issues of confidentiality, what happens when they confront the prospect of having their names sent to the state?
It seems to me that the value of most HIV medical information is highest to the HIV-positive individual. No matter what uses insurance companies, pharmaceuticals manufacturers, parents, or prison guards have for this information, its protection from misuse or abuse is of singular importance to HIV-positive people, right up there with insurance and viral load. But until the rest of society understands the importance of keeping this information private -- or, more importantly, until society stops discriminating against HIV-positive people and people living with AIDS -- these confidentiality laws will have limited effectiveness. Yes, we have laws to protect individuals, to keep people safe from discrimination and/or harm, but you know what? A law is just the beginning.
Robert Vázquez-Pacheco is Director of Education and Organizing at the Audre Lorde Project, Inc., Center for Lesbian, Gay, Bisexual, Two Spirit and Transgender People of Color Communities and a frequent contributor to Body Positive.