Facing AIDS in Prison: Interview with Physicians at Vacaville

Under any circumstances, coping with HIV infection is difficult. But the challenge may be made easier with certain privileges, such as financial mobility, or access to cutting-edge research. Such privileges are not available to people living behind prison bars.

Over the past several years, we have received many letters from people with HIV in prisons around the country. Many have questions about new treatments for a certain diagnosis, though they may not have access to a competent HIV physician. In some institutions people with AIDS must tolerate amazing neglect; in others, the care is well-intentioned but hampered by apathetic correctional systems or AIDS-phobic state legislatures.

HIV concerns are exacerbated by long-standing problems in the penal system. We spoke to two members of ACT UP/Los Angeles, which organized a demonstration at the California Institute for Women in Frontera, in Southern California, last November to publicize charges of poor medical care there. Although a number of women held at Frontera are known to have HIV, the facility has no licensed clinic to provide basic acute care, and no infectious disease specialist on staff. At least five deaths at Frontera are alleged to have resulted from neglect of prisoners needing medical treatment. Not all of the deaths are connected with HIV infection, but without dependable diagnosis and followup, inmates with HIV in any prison are particularly susceptible to misdiagnosis and inadequate treatment.

Under the California Department of Corrections, most male prisoners who require ongoing medical care of some kind are housed at the California Medical Facility in Vacaville, a few hours northeast of San Francisco. Women are generally sent to the California Institute for Women in Frontera. We were allowed to interview three physicians who care for inmates with HIV or AIDS at Vacaville: Jessica Clarke, M. D., Ph.D., Jan Diamond, M. D., and HIV Director Germn Maisonet, M. D. Our thanks to Public Information Officer Lieutenant Rita Montez for arranging the interview.

Dr. Clarke is also a volunteer Clinical Faculty at the HIV clinic of the University of California in Davis, and Dr. Diamond is Medical Director of the HIV Clinic at Contra Costa County Hospital. Dr. Maisonet came to Vacaville from East Los Angeles, where he treated HIV and substance abuse in his private practice; he was also the medical director of the Van Ness Recovery House, and of the Minority AIDS Project.

By the end of the interview, we were impressed by the level of professional care for inmates at Vacaville compared to what we have heard about other prison facilities. We were also struck by the depth of the personal concern of these physicians for their patients, and their frustration with the endless obstructions inside an institutional bureaucracy.

The final draft of this interview was edited by prison officials, as required as a condition for the interview, and certain remarks which addressed the level of HIV treatment at other prisons, particularly during transfers between prisons, were deleted.


DS: Are the three of you responsible for the medical care for every inmate at this facility?

JC: We only care for those who are known to be HIV+. We have at least 240 patients, and there are 90 beds for acute care in the prison hospital. We do not see inmates who may have HIV but are not identified. We estimate from previous seroprevalence studies that there are now 4,000 to 5,000 HIV-infected inmates in the prison system. But only 550 have been identified.

DS: Not everyone has been tested?

JD: Voluntary testing is available, but it has been very patchy. There is disincentive for the inmates to ask to be tested, because anyone found to test positive is segregated from the mainline. And the prison administration knows that they do not have the capacity to handle everyone who is infected, so they are not eager to find out. For a long time the California legislature wanted to institute mandatory testing of prisoners, followed by quarantine of the infected, ostensibly to stop transmission. But when AZT became accepted therapy for treating asymptomatics, they quickly figured out how much it would cost to really know who had the virus, and they dropped their push.

DS: What is the rationale for segregating the seropositives?

GM: I think originally the prison system worried that inmates known to have HIV or AIDS would be abused by other inmates. But that period is long over.

DS: Now it sounds like an impediment to what you might need to do for early intervention.

JC: And at other institutions that don't specialize in medical care, the situation is worse, because if someone tests positive, they'll be put in lockdown until they can be transferred here.

DS: How discouraging when someone knows enough to want early care for HIV. Is HIV treatment information available, at least in print, to the inmates on the mainline?

JD: There is no formal library with AIDS treatment information, but some inmates subscribe to various newsletters.

DS: At AIDS TREATMENT NEWS we get a lot of correspondence from prisoners around the country, most of whom can't afford to pay a subscription fee. Many of them would like access to a common copy at their institution.

JD: We would love to have a treatment library that all the inmates could use, but that's one of the many things we haven't had time to do.

JC: We also don't have good copying equipment, or the staff to make current copies of newsletters available. This is a system-wide problem within the Department of Corrections.

JD: And yet if you compare the HIV-affected inmates here to a comparable group of people "on the street," I think you'll find people here are much more well-read and self-educated. They have time, and they also talk among themselves about new treatments and their T-helper cell counts.

DS: I understand that condoms are disallowed in California prisons.

JD: Handing out condoms is illegal, because sex in prison is illegal. And inmates are given a disciplinary report if they are found with a condom in their possession. Yet everyone admits that there is a tremendous amount of bisexuality and homosexuality in prisons, and there is a lot of coercive sex, and outright rape in prisons. Nobody snitches because there is nothing more dangerous than being labeled a snitch.

JC: The inmates tell me you can manage to get condoms, but that it's a lot easier to get heroin. For instance, they might have to use the thumb of a latex glove as a condom. But they're not supposed to have them even for conjugal visits with their own wives. Inmates known to have HIV are not allowed conjugal visits, period. They can have visits with their parents only, not their romantic partners, siblings, or their children, which is a right allowed to non-HIV-infected inmates.

DS: So everyone must endure this irony: people with HIV are segregated for no medical purpose, and they cannot have conjugal visits, while people who are not segregated but might have HIV are having sex with other inmates unofficially, and conjugal visits officially, and all without condoms.

JC: Exactly! It's total insanity.

JD: It's criminal.

GM: Another inconsistency is the inattention paid to recovery programs for drug users. A lot of our inmates were substance abusers when they were on the street, and they tended to fit a profile of patients who did not show up for appointments, who did not give reliable medical histories, who could not pay the bills. And now they're here.

DS: Well, here they're a captive audience.

JC: They are more likely to stay sober, and to keep appointments, although of course, they can get illicit drugs in prison, and they have the right to refuse medical advice and treatment. We have three inmates who do AIDS education for the others, in English and in Spanish. We help them, but they do most of the work on their own. We're working on the principle that people listen best to their own peers -- they use a heavy prison lingo that's hard for us to follow!

DS: It sounds like chemical dependency, which predates some people's convictions and may follow them after parole, is one rail of the track they've been on.

GM: For some it's the whole train. And the prison system is enabling the train to continue down the same track.

JC: The only CDC-sponsored drug recovery programs for inmates on the mainline are NA and AA. For those in HIV segregated housing there are no programs at all. This contributes to an overwhelming recidivism rate.

DS: Why doesn't the Department of Corrections recognize dependency as a medical problem, appropriate for treatment at a medical facility like this?

JD: It costs money, and in my opinion, the criminal justice system sees a prisoner as someone to keep away from society, not someone to rehabilitate.

GM: But it costs $23,000 a year to house a well, non-HIV- infected inmate in California. Multiply that amount by 100,000 prisoners in the state's institutions. What if you gave that money to someone on the outside? They could support themselves, they could get into recovery groups, they could get psychotherapy if they were battered children, or children of alcoholics, or objects of sexual abuse. They could develop practical social skills.

JD: But instead we keep them in prison, in infantilizing situations where nothing is expected of them, everything is fed to them; they wait in lines and they have no responsibility. If handled differently, this could become a real window of opportunity for many.

JC: Segregation even further limits prisoners with HIV. They cannot access the few skill development programs available to inmates on the mainline.

JD: Four fifths of identified HIV-infected inmates are completely quarantined from mainline inmates, with little access to job and educational opportunities.

DS: Are all the people you see symptomatic? What if an inmate at another institution becomes symptomatic?

JC: Here we see anyone with HIV infection, whether they are healthy or quite ill. Prisons not equipped with medical facilities will transfer their sick inmates to us eventually, or to a community hospital for urgent care.

DS: Do you have time to give your patients good care?

JC: No, we don't have enough time, really, to spend with patients. We definitely need more staff -- we have so little administrative support. We need more paroling backup, more psychiatric backup, some secretarial assistance. Prisons are chronically understaffed. Even if they wanted to hire some more people, there aren't a lot of people eager to work here.

DS: Do you have access to any medications you want to prescribe?

JD: We can prescribe pretty much anything we need to. And we have as much access to investigational new drugs (treatment IND) as physicians on the outside have. We are careful to avoid anything that resembles biomedical research on prisoners, but we certainly give treatment IND drugs to those who need it and who have no other workable medical options.

DS: I have to tell you that a lot of our readers now in other prisons tell us a different story -- they frequently can't get the attention or medications they need.

JC: Oh, we're very familiar with those stories. We hear them from prisoners transferred here from other places. Just during a transfer, inmates tell us that they feel like lepers. And transfers can be delayed a long time because there is limited space here.

DS: Whoever is responsible for these policies must not be plugged into the contemporary network of treatment information.

JC: On the street if you need attention from an HIV- knowledgeable caregiver, you will probably head for the nearest big city. But as a prisoner you have no such mobility. Prisons are usually located well away from urban centers.

GM: At least here, they are guaranteed some level of HIV care. Depending on the geographic location of a prison, the resident physicians may or may not be familiar with treating HIV and AIDS. The isolation of geography can limit the level of expertise in a given institution.

DS: When you receive a patient from another facility, what are some of the diagnoses you feel are neglected at other prisons?

JD: At the top of the list would be checking serum antigen for Cryptococcus. I have never seen it diagnosed properly at another institution. Then it would be titers for Toxoplasma. And more and more we are seeing active undiagnosed tuberculosis.

DS: Do you use prophylactic drugs very much here?

JD: Yes. We use fluconazole for fungal prophylaxis, and have been for over a year. And of over 100 patients with very low T-helper cells, none of them have developed cryptococcal meningitis. For comparison, in patients transferred from other prisons who have received no prophylaxis, cryptococcal meningitis is one of the three most common opportunistic infections. And of course, we try to prevent PCP. I don't prophylax against MAI because I don't think it's useful.

DS: Vacaville has only male inmates. Are there medical facilities for women prisoners with HIV or AIDS?

JC: The only facility in the state for women is in Frontera, and it has very little HIV-specific medical care. I think it's safe to say that just like women on the outside, women in prisons are going to be the last people to be taken care of. Most HIV care in California institutions happens here at Vacaville, and I would like to see women be able to come here.

DS: When someone with AIDS is discharged from a hospital, they ordinarily receive a sort of reorientation called "discharge planning," to facilitate any outpatient care they may need, to have prescriptions or financial benefits explained, or to have future appointments arranged. What happens when someone with AIDS is paroled from Vacaville? Do you do all the discharge planning yourselves?

JC: We have no social workers to assist with an inmate's release. We are regularly acting as social worker, psychiatrist, and benefits counselor for our patients. Things can get very hectic, too. Sometimes people get paroled without us knowing in advance. We have had diabetic patients paroled without their insulin, and patients with active tuberculosis paroled without their TB medications. We have to ask inmates to tell us in advance if they're about to be paroled.

JD: And unfortunately, people are by law automatically paroled to the community where they were arrested. It's so counterproductive. They can't start over somewhere new -- they're forced to return to the very environment where their life grew out of control. When people are paroled, what they need is a whole new life.

DS: Is there the possibility of compassionate release for prisoners who are very ill?

JD: There are guidelines established for people who have somewhere to go, and who supposedly have less than six months to live. The Department of Corrections will say this is available. But in reality, we're very frustrated with the amount of foot- dragging involved with obtaining a compassionate release. We make applications, we send letters, and maybe, maybe someone will get out in a timely way. The only three inmates who have obtained compassionate releases in the last three years died within one week; one of them died a few hours after release.

DS: What about release to a hospice?

JC: I think one of the obstacles to releasing inmates to a hospice is the mentality surrounding prisons in general. People are in here because they're "bad," and must be reprimanded, and they supposedly are not deserving of the caring and compassion they'd get at a hospice.

DS: You've described many problems as apparently intrinsic to the correctional system. What would change this systemic inertia?

JC: Well, we're in a bureaucracy where it's very difficult to get the staffing we need. Another problem is that there are relatively few physicians willing to immerse themselves in HIV care. At a lot of institutions, the resident doctors and nurses have refused to even look at inmates with HIV needs. It's the same problem on the outside, only worse in here.

GM: One out of every three African-American men in California between the ages of 18 and 40 are involved at some time with the prison system. Well over half of the patients we see are men of color. Yet, poor people of color get better medical care in prison than they do as free citizens in the street.

JD: The key is prison reform. For instance, there must be ways of dealing with nonviolent crimes other than spending billions of dollars of our limited budget imprisoning people, usually resulting in a permanent revolving door in and out of prison.

DS: It must be oppressively daunting for people already facing incarceration for much or all of their future to also face the troubles of fighting HIV progression, or the trauma of full- blown AIDS infections.

JD: Oh, we have one guy who survived a terrible bout of cryptococcal meningitis, his first AIDS-defining diagnosis. His mother came to California to visit but she died unexpectedly before he saw her; then his ex-wife and his daughter both died, we believe of AIDS. But he has maintained the most positive attitude. He even takes care of other sick inmates. He's been through all of this, and he's a joy to be around.

GM: There are people here who are decent human beings, who have been through hell, and no matter what happens, they will not be broken.

Prison Issues Resources

AIDS TREATMENT NEWS staffer Thom Fontaine has been collecting prison-related information and letters sent to us from people in prisons around the U. S. for over three years. He is willing to send an information packet, including a list of HIV- related periodicals, to any correctional facility that wants to set up an HIV treatment library. Most inmates cannot afford individual subscriptions to AIDS periodicals, and the resulting lack of knowledge effectively constitutes a deprivation that can lead to unnecessary illness and worse. Thom feels that every correctional facility should take the responsibility to subscribe to sources like the AmFAR Directory or AIDS TREATMENT NEWS or Treatment Issues. If treatment information is uniformly available, inmates and prison personnel can educate themselves, and save lives and money by working cooperatively with institutions on health concerns. Interested persons should call Thom or leave a message at 415/255-0588.

At least three chapters of ACT UP are working on HIV/prison issues. Following are the contact numbers we were able to verify:

* ACT UP/Los Angeles, Prisoners With AIDS Advocacy Committee United, 213/669-7301.

* ACT UP/New York, Prison Issues Working Group (ask for Ioannis Mookas), 212/564-AIDS.

* ACT UP/San Francisco, Prison Issues Committee, 415/563- 0724.

The only national organization addressing the needs of prisoners with AIDS is the American Civil Liberties Union. Judy Greenspan is the AIDS Information Coordinator of the ACLU's National Prison Project, and she has offered to facilitate connections between people who would like to work on issues of AIDS in prison. She cannot solve individual problems for prisoners, but she can send them a packet of resource information. Interested persons may call 202/234-4830, or write to the ACLU National Prison Project, 1875 Connecticut Ave, NW, Suite 410, Washington, D. C., 20009.