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Positive Progress: Improvements in HIV Testing, Treatment and Continuity of Care

By Sue Saltmarsh

May/June 2012

Positive Progress: Improvements in HIV Testing, Treatment and Continuity of Care

From the Centers for Disease Control and Prevention (CDC) to the smallest AIDS service organization in the country, most agree that the first step to stopping the HIV epidemic in its tracks is to get all adults tested and, if positive, into treatment.

Numerous studies have shown that being on antiretroviral treatment suppresses viral load and reduces the chance of transmitting the virus. So being able to test more people would be an "everybody-wins" situation, right? (See "Money Well-Spent" for Dr. Chad Zawitz's take on opt-out testing.)

One thing that HIV/AIDS advocates struggle with is that with opt-out testing in correctional settings, only an estimated 50% of the inmates choose to take the test. But mandatory testing would require a significant trade-off -- the individual inmate's right to privacy vs. the protection of the public health. In the environment of a prison, there's already enough violation of personal privacy going on, so while many civil liberty advocates would find the idea of mandatory testing yet another invasion of privacy, there is still the problem of risk to public health when inmates are released, go back to their communities, and transmit HIV unknowingly to their partner or partners because they opted out of being tested or didn't know their status.


Prison Health Care

Anyone who works in the fields of HIV/AIDS, social work, or law enforcement, as well as anyone who is or has been incarcerated, should know that the condition of health care in our country's correctional institutions is lacking, to say the least.

Here at PA we frequently hear from inmates who are not able to be adherent with their HIV regimen because facility personnel don't understand the importance of uninterrupted treatment with a consistent combination of medicines, or they miss their doses due to being on lockdown, or they develop resistance to one drug, but are not able to change their regimen.

On the other side, prison administrators deal with funding cuts from the state or federal government and are frequently faced with not having the money to pay for enough nurses and doctors, let alone the expensive drugs used to treat not only HIV, but also any other illnesses the inmates live with.

Add to that the high risk behavior that goes on in prison (sex, consensual or not; tattooing; needle sharing; etc.) and it's no wonder that the prevalence of HIV in prisons is up to five times higher than outside the cells, though it is also true that most new infections happen outside prison walls. Unfortunately, other factors associated with high risk for HIV -- poverty, race, drug abuse, and stigma for instance -- are at play in communities that also have the highest crime rates.


Legislative Efforts

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Prevalence of HIV in prisons is up to five times higher than outside the cells, though it is also true that most new infections happen outside prison walls.

However, there are attempts to reduce the transmission of HIV in correctional facilities. On the federal level, Congresswoman Maxine Waters (D-CA) introduced the "Stop AIDS in Prison Act" in December 2011. Besides also providing for opt-out testing in all federal prisons, it goes further, listing the following purposes:

In Illinois, in August of 2011, an amendment was added to the Unified Code of Corrections that provides HIV testing be offered to inmates on an opt-out basis with no co-pay. It also directs that pre-test information be provided to the inmate and informed consent obtained as required in the AIDS Confidentiality Act. The amendment also speaks to the release of inmates from prison, providing that all inmates due to be released receive "appropriate information in writing, by video, or other electronic means, concerning HIV and AIDS."


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John Howard Association

The John Howard Association (JHA) is a non-profit organization that works in Illinois to achieve "a fair, humane, and cost-effective criminal justice system by promoting adult and juvenile prison reform, leading to successful re-integration and enhanced community safety." Teams of four to six trained volunteers led by JHA staff conduct tours of Illinois' state correctional facilities. The observations of the volunteers are recorded in written reports prepared by JHA, focusing on such issues as medical and mental health care, disciplinary procedures, and the physical condition of facilities.

John Maki, Executive Director of JHA, spoke with PA about the state of HIV testing in these facilities. Maki said it was during the monitoring of the Northern Reception and Classification Center -- the nation's largest intake, classification, and processing facility for male inmates in state custody -- that the disparity between the intent of the law and what was actually going on first surfaced. When JHA asked for the lab reports that should have accompanied the testing, they discovered that the testing was not being done.

Maki is concerned that the same thing is happening with hepatitis C testing, in some ways an even greater risk than HIV for inmates.

Maki explained that within the Department of Corrections (DOC), there is often miscommunication and evidently, people on staff at the facility, as well as those at other facilities, thought the tests were taking place when indeed they were not. This would often lead to inmates not being offered the test because the staff thought they'd already had it or it had been done at another facility. JHA was suspicious when the number of new diagnoses was much lower than expected.

One of Maki's frustrations was with the law itself. The way the statute is written, testing is not mandatory -- it says the facility "may conduct" opt-out testing -- so the prison itself can "opt out" of providing it just as the inmates can opt out of taking a test.

There is also lack of clarity in the language of the law about the timing of the testing. According to an internal JHA memo, "Although the amended statutes undoubtedly were born of the best intentions, they are ambiguous as to whether HIV testing must be provided to inmates upon initial entry into DOC, at the point of reception and classification. To provide opt-out HIV testing when an inmate is about to be released from prison (as some facilities do), rather than at the point of initial entry into the system is counterproductive, particularly if the goal is to promote early detection, entry into care, and prophylactic treatment to reduce secondary infection and mortality, and prevent further disease transmission."

The good news is that JHA's investigation of the situation led to pinning down a timetable with the DOC for implementation this spring and Maki says JHA will hold them to that.

The Funding Barrier

Change

Small victories mean a lot and even small changes can be really powerful.

When an inmate is identified as HIV-positive the DOC is legally obligated to provide "medical care while incarcerated, counseling, and referrals to support services." However, the JHA memo states that "implementation [of the statute] relating to treatment is 'subject to appropriation,'" i.e., the legislature actually providing DOC with the funds necessary to fulfill the mandate. So unless the legislature comes up with that funding, there is no duty to implement the statute. There is also a financial disincentive for the DOC to test inmates upon entry rather than waiting to test them when they are nearing release, thereby avoiding the cost of treating them while they are in custody.

And so a vicious cycle of unknown HIV status, risky behavior that results in more infections, leading to more HIV-positive inmates being released without knowing of their infection, ending with ongoing new infections in the community is perpetuated.

With so many states in financial trouble, it seems likely that the same situation exists throughout the country and perhaps in federal prisons as well. And funding for Medicaid, community health centers, and HIV prevention is cut with no thought to the long-term consequences.


Telemedicine

But there is some good news, at least here in Illinois. A partnership of DOC with the University of Illinois Medical School is providing telemedicine monitoring of HIV-positive inmates, a program that Maki is enthusiastic about. Telemedicine allows for an HIV specialist to communicate by computer, via Skype or a similar service, with HIV-positive inmates, monitor their lab tests, and discuss any questions or concerns they may have about their drug regimen.

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"It's getting rave reviews!" Maki exclaimed. "Not knowing anything about telemedicine, when I first heard about it I thought it seemed like a way of cheating on care," he admitted. "But when I really looked at it, I realized that it was really improving the quality of care."

He also pointed out that, though it was not the goal, telemedicine is providing oversight by getting "another pair of eyes" on the medical conditions in DOC. He went on to say that since the implementation of telemedicine, reports have shown improvement in the delivery of meds to inmates and their adherence to their HIV regimens. He would love to see it expanded to serve inmates with other conditions besides HIV, especially since telemedicine enables the prisons to gain the benefit of experts in specific diseases at a fraction of the cost.

"It's really the best of both worlds," said Maki. "You're saving money while you're providing better care."

There is also exciting potential for telemedicine to provide some "infrastructure" that could be used by parole officers to better understand and monitor the medical needs of their parolees. Maki wishes that parole officers and soon-to-be parolees could meet well ahead of the release date in order to establish awareness of the inmate's medical and mental health needs, as well as providing a better foundation for this most important relationship between the inmate and law enforcement. "An inmate is going to live or die by their parole officer," says Maki, so the more the officer knows, the better the outcome for them both.

Maki says that JHA intends to use an upcoming grant to delve into the issue of telemedicine and medical conditions at DOC. Though there are obvious problems, he gave the DOC credit for doing some innovative things, such as their partnering with the AIDS Foundation of Chicago to produce and screen "Outside the Walls," a video educating inmates on HIV treatment and prevention and encouraging them to take charge of their health upon their release (see "Video Readies Inmates for Return to Society").


Hope for the Future

What would Maki ultimately like to see in terms of HIV and the DOC?

"I think the opt-out testing is a good start," he said. "But I'd like to see the DOC really seeing diagnosis and treatment education as part of its mission and that it's really instrumental to public health." He'd also like to see more emphasis on prevention, including condoms being provided.

To Maki, continuity of care is also crucial and that means from the point of entry, through the sentence, to the transition back to the community. He mentioned Sheridan Correctional Center and Southwestern Illinois Correctional Center, the so-called "drug treatment prisons," as places that focus on providing continuity of care. The fact that they focus on treating drug addiction and the other issues that often come with it gives them a somewhat different mindset than other prisons and it encourages a focus on continuity of care. Plus, the drug treatment facilities often have better resources than other facilities.

A man who likes a challenge, Maki admits to being "intrigued" by the "messiness" of the whole situation. He takes the DOC at their word when they say the testing program will be implemented in the spring. While it is just a first step in the right direction, in a system where things are so dysfunctional, he says, "Small victories mean a lot and even small changes can be really powerful."


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