When HIV Meds Are Locked Up: The Challenge of Adherence in Jails and Prisons

Kerry Thomas already knew that he was HIV-positive when he entered the Idaho State Correctional Center (ISCC) in Boise. So did prison officials, both from his health records from a previous prison term and from the publicity of his HIV criminalization case. When he arrived, however, prison medical staff said that they did not have his antiretroviral medications and were unsure when they would be able to provide them.

Fortunately, Thomas maintains a good relationship with his doctor in the outside community, a connection not dampened by his imprisonment. He called his doctor to ask if he would send his medication to the prison until its clinic could provide it. In response, the doctor called the prison and asked why Thomas was not being provided his medication. Half an hour later, Thomas was called into a prison office and, he recalled, "somewhat reprimanded because I called my doctor in the community versus just waiting." But his call worked. "They were motivated from that point on to have the medication."

In Rhode Island, Dr. Timothy Flanigan, a professor of medicine at Brown University's Alpert Medical School, developed the HIV Core Program, which provides care to people with HIV in that state's prison system and links them to community-based resources upon release. He has seen people enter prison with the name and phone number of their pharmacy memorized, enabling the prison's nurses to call and confirm the medications immediately. "It's important to know where you got your meds and the phone number of the pharmacy," he emphasized. Otherwise, patients may experience a gap in medications.

In many U.S. jails and prisons, people with HIV face similar institutional obstacles in adhering to medication regimens. Thomas described the ISCC process for refilling prescriptions: "You get a 30-day supply of the medications. Then, for the last 10 to 14 days left on the medication, you submit a request to let the clinic know that you're almost out." But medical staff do not always order a refill before those 30 days are over. When that happens, Thomas explained, the patient must put in a request for a medical visit, a process known as "sick call," which can take up to 48 hours. At sick call, the nurse refers to the patient to a medical provider, which takes another week. When the patient sees the provider, he is often told: "Your prescription has expired. We'll have to reorder it." Then he must wait another several days before his order comes in.

The result, said Thomas, is "almost a two-week turnaround."

Gaps in medication can have significant consequences. Missed doses can lead to the development of drug resistance, which can make HIV treatment ineffective. Even if they don't result in resistance, treatment lapses can make it difficult to maintain undetectable viral load. One benefit of an undetectable viral load is a drastic reduction in the likelihood of transmission of HIV to others, which could make it a vital HIV prevention strategy in the vast majority of prisons and jails that ban safer sex and injection equipment.

Idaho's prison medication delays are not unique. New York's prisons have the highest concentration of HIV-infected people in the country, amounting to 17% of all people with HIV in state prisons nationwide. In 2009, New York passed the Department of Health (DOH) Oversight of HIV/HCV Bill, requiring the DOH to annually review HIV and hepatitis C care in state prisons, publicly report its findings and mandate improvements so that prison health care mirrors community standards. The DOH found that approximately half of all prisoners with HIV in New York State correctional facilities had not been identified by prison staff. Furthermore, of those identified, only 75% were receiving treatment. But, as Thomas's experience shows, being on the treatment list is no guarantee of uninterrupted adherence. The Correctional Association of New York, which monitors prison conditions, found that a "significant portion" of the people they surveyed had concerns about getting their medications on time, including one person who, four times within a six-month time period, was forced to go without medications for a week, and another who experienced a four-month interruption.

Dr. Flanigan recommends that, if there is a gap, the patient should have his or her viral load checked four to 12 weeks after treatment is restarted to ensure that viral suppression is still happening. If a viral load is detectable even after two weeks of uninterrupted medication, the provider may need to prescribe a new combination, a process that should be undertaken "always with counseling and buy-in from the patient," he said.

Not every prison medical provider is as passionate about ensuring their patients' health and adherence. But that doesn't mean giving up on access to medications. "Know who your medical provider is," advised Thomas. "Know the policies, what treatment you have access to, who your doctor is, who your nurse is, what medication your system approves, what the contract has. [Know] if there's an outside provider that you can contact." Getting this information isn't always easy, he acknowledged, but "what keeps me healthy is taking control of my own condition or my own life in an environment where we have very little control."

If there is a disruption in the medications, Thomas recommends writing a request to get to the prison's chronic care clinic as quickly as possible. "You say: 'This is the medication I'm missing. I ordered this drug on this day and I only have three days left.' If you make it an emergency, it tends to motivate them to order the medication." He said, "I always tell them to write CHRONIC CARE CLINIC on the very top in bold letters."

Dr. Flanigan agreed. He recommends that inmates "put a slip in to see the doctor and ask to have [their] viral load checked." The request typically speeds the process of obtaining medications. "There are times you may have to write the medical director or call your lawyer," he acknowledged, "but I always advocate working within the system first."

Stigma may also prevent people in prison from accessing treatment. In New York, at least 12% of women in state prisons are living with HIV, more than double the 5% rate for men. The Correctional Association found that, while New York's women's prisons provide opportunities to obtain HIV services, myths, negative attitudes and stigma about the virus remain pervasive among both staff and women who are imprisoned. The stigma is frequently compounded by violations of medical confidentiality, leading to discriminatory treatment, fear and harassment.

But avoiding treatment can have fatal consequences. Dr. Flanigan pointed out that, in 2015, not taking medication is the main cause of HIV/AIDS-related deaths behind bars. He said, "We need to be counseling people on the importance of taking their [antiretroviral treatments]."

At the same time, Dr. Flanigan urges doctors and medical staff to ensure that their patients are fully informed. He said: "All patients -- whether inside or out -- need to feel empowered that they can beat this virus, that even though we don't have a cure, [through treatment] we can put this virus on ice."