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It's A Crime! HIV Behind Bars

January 1999

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

It's not news that there are a lot of people with HIV and AIDS in the nation's jails and prisons. Are they getting the medical treatment and social support they need? Are they experiencing discrimination based on their HIV status? What about issues like confidentiality and self-determination?

New York State's prison system houses some 70,000 inmates, all of whom have been sentenced to a year or more in prison, in 69 facilities located throughout the state. (Prisoners whose sentences are less than one year are incarcerated in local jails and are not part of the state system.) Of these prisoners, 95 percent are male and 5 percent female. About 50 percent of the population is African-American, 32 percent Hispanic, and 16 percent white. About 59 percent self-report past drug use; experts estimate that the actual number of those with drug histories is much higher.

The most recent estimates from the Department of Correctional Services are between 7,500 and 8,000 of the inmates are HIV-positive. This is only an estimate, because many inmates are not tested. The state does not have a mandatory testing program for prisoners, and most AIDS activists and prisoners' rights activists would oppose any such mandatory program. But what the system also doesn't have, and what many of these same activists would support, is a comprehensive education program and anonymous and voluntary testing that would encourage people to be tested.

The estimates are based on seroprevalence studies that are conducted every other year by the State Department of Health. When an inmate enters the state prison system, blood is drawn for tests other than HIV that are performed by the Department of Correctional Services. The discarded blood is given to the DOH epidemiologist to do a seroprevalence study. It's sort of the ultimate in anonymous testing; they couldn't trace back if they wanted to.

The latest numbers from the seroprevalence study at one facility show approximately 9 percent of the men HIV-positive, down from a high of 17 percent in 1987, and 18 percent of the women, compared to a 1988 high of 19 percent. Thus the percentage of HIV-positive men has shown a substantial reduction over the years, while the figures for women have remained fairly constant. These numbers reflect the seroprevalence rate of a New York drug-history population.

Diagnosis and Confidentiality

Aside from the anonymous seroprevalence study, only about 3,500 New York State prison inmates have individually been tested and found to be HIV-positive. This means that about half of the people with the virus in the prisons are not diagnosed and not receiving any care.

Many of the reasons that people remain undiagnosed relate to problems within the correctional system. There is no confidentiality in prison, so many people are reluctant to come forward to be tested

It is very difficult, even under the best of circumstances, to maintain a secret in prison, and there are many mechanisms that result in revealing someone's status. At times nonmedical people get access to medical records that they shouldn't. Or staff may have a list of all the inmates who are scheduled to see a visiting infectious disease doctor. Or there are med lines, and it's pretty obvious what people are getting. There have even been reports of an officer calling out something like, "Johnny Jones, come up and get your AZT."

Another reason many inmates are reluctant to get tested is that they do not believe they will receive adequate medical care. There's tremendous skepticism about the medical system in prison. Inmates question whether there will be any benefit to them from coming forward and getting tested, or will they only leave themselves open to being hassled and ostracized.

Cultural issues also play a role. The inmate population is largely urban black and Hispanic; medical providers within the system are often foreign-born and -trained and may not even speak English well, much less be culturally sensitive. And everyone knows about Tuskegee.

HIV Care in Prison

Prison inmates tend not to get the best HIV care possible, and in large part this is because no chronic care system exists within the correctional system. Healthcare, including HIV care, is managed incident to incident, with no continuity of care and no one provider who is managing the whole patient.

There are both positive and negative aspects to HIV care in prison. All of the recognized antiretroviral therapies are available through the Department of Correctional Services, and protease inhibitors and NNRTIs are prescribed in combination therapies. But there really isn't a good system for people for making sure the right medicine is prescribed, for monitoring, and for supporting adherence.

The view of the Department of Correctional Services is that their primary care physicians can deal with the vast majority of the HIV-related treatment, including prescribing antiretroviral therapy and monitoring. While infectious disease specialists are available in theory, most prisoners are not being followed by infectious disease specialists.

Some of the people treating HIV-positive people have spent a lot of time educating themselves, and some have almost no training and background in the treatment of complex HIV-related illnesses. There is little in the way of quality control of the providers, and people are not concentrated on those providers with the greatest skill. Rather, the HIV population is spread throughout the entire system and all the providers. The result is that people are being prescribed medications that may or may not be appropriate, and they are not being properly monitored while they're on those medications.

Viral load tests are a case in point. Prisoners can get viral load tests. But are they being done properly? And is anyone monitoring? There are patients who appear to be failing, or their viral load is not being reduced properly, but their antiretroviral therapy is not being changed. They are not being referred to an infectious disease specialist to determine the appropriate course of action.

Also overlooked is that the infectious disease specialists should be seeing patients initially, before a course of therapy is decided upon. Making that initial determination of therapy has a major impact on whether you're going to have to change therapy later on. It's not simply a matter of giving everyone one combination to begin with and then changing it later for the people who don't respond well.


The problems surrounding HIV care in prison are exacerbated by lack of patient education and lack of support for inmates trying to comply with the very difficult antiretroviral therapies. Combination therapies place a tremendous obligation on the patient, and there needs to be real cooperation and partnership between the provider and the patient. The therapy only works if the patient is properly educated and assisted in adhering to the exacting demands of the regimen.

Patients who are not adequately informed about the side effects of some of these powerful drugs, for example, may just abandon the therapy rather than trying to work through the difficult transition period. Nor is there any consistent program to help inmates adhere to the stringent guidelines on how these medications should be taken -- with or without meals, in a certain time period, what with what. There hasn't been coordination with meals. Inmates in disciplinary segregation are not even given a clock so that they can tell when they are supposed to take their medicines. And sometimes the meds are even dispensed at the convenience of the correctional or medical staff, rather than on the strict schedule these drugs demand.

The danger of this approach extends far beyond the prison walls. Although no one is studying the problem, it is probable that patients who are not monitored, and who are not complying with the regimen for their combination therapies, are going to develop resistance. While the numbers show that deaths are down now, if these unmonitored patients develop resistance over time the numbers of deaths will go back up. And eventually these prisoners will be released into the community. They will be back out on the street, they will be virtually untreatable, and they may even be spreading a resistant strain of HIV.

Specialty Care

Besides infectious disease specialists, people with HIV and AIDS often need to be seen by other types of specialists for a variety of opportunistic infections. To deal with this need, what the Department of Correctional Services has done is establish something like a managed care system just for specialty care. If a patient needs an ophthalmologist, for example, the prison physician will write out a consultation request. This is sent to an outside contractor, who functions as a gatekeeper to determine whether the consultation should happen, arrange for the appointment, then have any information returned to the prison.

A problem with this specialty care system is that the specialist doesn't actually treat the patient. The specialist examines the patient and makes recommendations, which then go back to the prison doctor, whose responsibility it is to implement them.

Here again, follow-up is a problem. There is no consistent system to ensure that the specialist's recommendations are followed, or even that the specialist's request to see the patient again is complied with. Thus there is little or no coordination between the specialist and the primary care physician. They never talk to each other, but just pass the patient's papers back and forth.

Severely Ill Prisoners

The Department of Correctional Services has a system of Regional Medical Units, which are something like skilled nursing care facilities. The first was the Walsh Regional Medical Unit, which opened in 1991 in the Mohawk Correctional Facility. Not a hospice, this is basically where the most severely ill prisoners are sent to die, although here too the death rate is down. Care is provided by prison doctors, not specialists, and questions have been raised as to the appropriateness of that care.

In 1996, a second RMU was opened and services were contracted out. Indications are that at least some appropriate care is being provided. But these are separate providers, isolated in that unit, and without coordination between the rest of the prisons and this RMU. If someone leaves that facility there is little or no follow-up.

The RMU system has had another adverse effect on very ill HIV-positive people. New York has a compassionate leave system, called medical parole, under which people who are terminally ill can be released before they have served their minimum sentence. Medical parole is limited to people with terminal illnesses and severe restrictions on their ability to ambulate and to care for themselves -- people who pose no threat, and for whom there is no public safety reason to keep them incarcerated.

With the RMU system, however, there is now an alternative to medical parole, and one that is easier and faster for corrections staff to make arrangements for. So the danger exists that terminally ill prisoners are being warehoused in the RMUs rather than sent home to die with their families.

Even the parole system can be a special problem in HIV. When someone who is really sick is denied parole, and told by the Parole Board to wait for two years before reapplying, what was meant as a few years behind bars can become a death sentence.

The author wishes to thank Jack Beck, Esq., of the Prisoners' Rights Project of the Legal Aid Society for providing background information for this article.

Back to the January 1999 Issue of Body Positive Magazine.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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