"The Judge Gave Me Ten Years. He Didn't Sentence Me to Death.".

Inmates with HIV deprived of proper care

In prisons and jails across the country, inmates with HIV or AIDS are being denied proper treatment. In many cases, guards and medical staff have blocked inmates from getting their vital drug regimens, sometimes for months at a time, or have prescribed regimens that are dangerous. Such negligence can lead to drug resistance. It can also lead to death.

"We routinely get letters from people who are not getting their medications," says Christine Doyle, research coordinator for Amnesty International, U.S.A.

The mistreatment appears to be widespread and may affect thousands of inmates.

It may also be illegal. The Supreme Court has ruled that prisoners must receive adequate medical care. The 1976 decision in Estelle v. Gamble states, "Deliberate indifference to serious medical needs of prisoners constitutes the `unnecessary and wanton infliction of pain' ... proscribed by the Eighth Amendment. This is true whether the indifference is manifested by prison doctors in their response to the prisoner's needs or by prison guards in intentionally denying or delaying access to medical care or intentionally interfering with the treatment once prescribed."

Since 1996, combinations of three antiretroviral agents, including one protease inhibitor, have dramatically improved the health of many people with HIV and AIDS. The basic government recommendations for HIV and AIDS medications, as outlined by the National Institutes of Health at the Department of Health and Human Services, urge three-drug combination therapy for "all patients with symptoms ascribed to HIV infection." Using a combination of two drugs, or one drug alone, is strongly discouraged.

But some state systems are denying inmates the three-drug regimen as a matter of policy. For years, the Mississippi State Prison at Parchman required inmates with HIV or AIDS to prove they could handle a two-drug regimen for six months before they were allowed access to expensive protease inhibitors. This prison-wide policy applied even to those inmates who had successfully followed a three-drug regimen outside prison.

On March 5, 1999, ten HIV-positive patients at the Mississippi State Prison at Parchman filed a motion for a preliminary injunction as part of an ongoing class-action lawsuit at the prison. They alleged that the medical care they were receiving was endangering their lives.

U.S. Magistrate Jerry Davis responded by filing a preliminary injunction ordering the state of Mississippi to provide its HIV-positive inmates with triple-combination therapy and the standard of care established by the federal government.

"The court finds that the HIV-positive inmates are entitled, at a minimum, to the degree of care outlined in the guidelines of the National Institutes of Health," reads the court's Memorandum Opinion of July 19, 1999. "Simply because they are incarcerated should not subject these inmates to a level of care that will significantly lower their chances of surviving with the virus, especially since the treatment that will give maximum suppression is known."

"In case after case I reviewed, prisoners were deliberately denied the standard medical treatment for HIV infection," Robert Cohen testified for the plaintiffs. "It is my professional opinion that the grossly inappropriate care currently being provided is resulting in unnecessary pain and suffering and will be responsible for unnecessary deaths for patients who would respond to appropriate treatment."

Cohen, a medical doctor in New York, has worked in the field of prison health care for twenty-five years. He served as the director of the Montefiore Rikers Island Health Service, where he oversaw health care for 13,000 prisoners, and he has reviewed medical care for the Department of Justice.

"What they were doing [in the Mississippi State Prison at Parchman] was barbaric," he says.

Cohen filed a "Report on the Medical Care of Prisoners with HIV Infection at the Mississippi State Prison Parchman Farm," dated February 25, 1999. "There is a policy at Parchman, clearly stated within the medical records, that patients cannot receive [the protease inhibitor] Crixivan until they have received two medications alone for six months," he wrote. "Adding one new drug to a failing two-drug regimen assures the early development of resistance. This is almost always the wrong approach, and it is the only approach taken at MSP/Parchman."

One inmate whose medical records he examined was mistreated for more than a year. "Contrary to standard practice, the patient was started on two medications, AZT and 3TC" on September 16, 1997, Cohen wrote. Beyond that, the inmate had trouble getting any care at all, even when he developed potentially serious symptoms.

"The abysmal care this patient received, and continues to receive, is shocking," Cohen wrote. "He is left to waste away in his cell, constantly having seizures and uncontrolled diarrhea, while the medical staff ignore him, refuse to examine him, make no effort to find out what is wrong with him. When they discover a serious abnormality in the brain, they ignore it. He receives inadequate doses of medication to control his seizure. He complains of loss of vision, and no evaluation takes place. He was intolerant of his medications, yet no effort was made to give him medications which he could tolerate."

Cohen documented another patient who "had been treated on Crixivan, AZT, and 3TC for two years prior to his incarceration." Once this inmate got to Parchman, he was not allowed Crixivan. Three months later, his viral load "was found to be 38,113," wrote Cohen. Viral load refers to the amount of virus in the blood. Even with the patient's elevated count, which indicated resistance, the prison continued to give him the medications that had been proven ineffective.

The inmate's written notes to the medical staff reveal his anxiety over not receiving his medications. "I was taking Crixivan, before I got to prison, in the free world for two years, but since I got to Parchman I have not been able to get my Crixivan," he wrote on September 8, 1998, according to Cohen's report. "I request once again for my Crixivan. I have been out now for almost three weeks. Please refill my medication."

The inmate received this reply: "You will be started on Crixivan after you have been proven compliant on Combivir (AZT and 3TC combined in one pill) for six months" (emphasis is in the original).

Cohen's conclusion: "This is almost unbelievable. A patient doing well on standard combination therapy is taken off his effective treatment. Why? The reason is the MSP/Parchman standing policy that you must take six months of therapy with two drugs before you are eligible to get a protease inhibitor. In this case, stopping the Crixivan resulted in the predictable development of resistance. Even with the results of the viral load available, he was restricted on medications which weren't helping him, and he was still denied access to medications that would help him. This is reprehensible."

The Mississippi Department of Corrections disputed Cohen's conclusions. "It is our position that he was incorrect, that he just didn't have enough to go on," says Leonard Vincent, a lawyer for the Mississippi Department of Corrections. He says that Cohen "came in and looked at sixty to eighty records in one day."

However, the Department of Corrections did agree with the judge who ordered the preliminary injunction. "It was our position all along" that health care for inmates with AIDS and HIV needed to change, says Vincent.

The situation at Mississippi State Prison at Parchman is not unique. According to a March 2000 South Carolina Legislative Audit Council report entitled "A Review of Medical Services at the South Carolina Department of Corrections," the state's approach "begins with a two-drug regimen with the addition of a third drug as needed." That policy, warns the Legislative Audit Council, "is not generally recommended."

Since that audit, the department has asked the South Carolina Department of Health and Environmental Control to review HIV and AIDS care in the prison system, says John Barkley, spokesman for the South Carolina Department of Corrections.

In California, two women's prisons, Central California Women's Facility in Chowchilla and the California Institution for Women in Frontera, were sued in the mid-1990s over allegations of medical negligence and other abuses. Among the plaintiffs were HIV-positive women who claimed they were denied necessary care and medications. In an August 1997 settlement, the prisons agreed to drastic changes in medical care and to award the plaintiffs' attorneys $1.2 million in fees.

Keith Carter, an HIV-positive inmate doing time for armed robbery in the Florida corrections system, says he got his medications. The problem was, he got them at meal time. In late 1999, he was housed at the Tomoka Correctional Institution in Daytona Beach, Florida. One of his drugs was Crixivan. "I can't eat till an hour after I take it," says Carter. "If I eat, I have to wait two hours. For the longest time, they would wake us up at 8:30 in the morning, give us our medication, then take us directly to breakfast."

Crixivan is made by Merck. According to company literature, eating a heavy meal with the drug can lessen its absorption by 77 percent. One of the drug company's guidelines for administration of Crixivan reads: "Do not take Crixivan at the same time as any meals that are high in calories, fat, and protein (for example--a bacon and egg breakfast). When taken at the same time as Crixivan, these foods can interfere with Crixivan being absorbed into your bloodstream and may lessen its effect."

"So he had a choice of not taking the medication or he could skip breakfast," says John Doellman, who holds power of attorney for Carter.

Carter had carefully researched his medications before he started to take them. Fearing he would become resistant if he did not follow the manufacturer's guidelines, he decided to start skipping breakfast. He says he began to buy extra food from the canteen.

At night, the medication came at the wrong time again. "So I would keep it in my cheek and not swallow it, then get out of there and put it in my pocket, he tells me over the phone. "I did this for months. It was very risky. I could have been locked up in disciplinary confinement for trying to save my own life."

In this way, Carter says he managed to take his medications according to the manufacturers' directions. But he says some of his fellow inmates weren't so wily. "Those guys, a lot of them, don't have people on the outside. They're ignorant--they don't know they're risking their lives taking those meds at the wrong time. Some of them don't realize they're killing themselves. Others think they're dying anyway, it's not worth it. Others don't want to put themselves forward. They're frightened."

Doellman finally contacted Jackie Walker, AIDS coordinator of the ACLU's National Prison Project. "I am writing to you on behalf of Keith E. Carter, #417290, a prisoner living with HIV incarcerated at your facility," wrote Walker to the superintendent of Tomoka Correctional Institution. "I am deeply concerned about reports regarding access to medication for Mr. Carter.... He is faced with the difficult choice of abstaining from meals or eating but knowing insufficient levels of Crixivan are reaching his bloodstream. Because of this problem, he skips breakfast and seldom eats lunch. In June, he was diagnosed with anemia, and vitamins were prescribed."

"It took only one letter from Jackie on the ACLU National Prison Project letterhead to straighten that situation out," says Doellman.

The Florida Department of Corrections said that it could not comment on Carter's case.

Carter, who now lives at a halfway house, remains concerned about his health. He says that, despite his efforts, he missed several doses during his time at Tomoka. "It's a terrible, terrible feeling to be powerless over your own life," he says. "The judge gave me ten years. He didn't sentence me to death."

According to the Bureau of Justice Statistics, 25,483 U.S. state and federal prisoners were HIV-positive in 1998 (the latest numbers available). Not all of these showed symptoms that would require the three-drug regimen. But many who did failed to get the care they needed.

In September 1999, the University of Pittsburgh and Stadtlanders Pharmacy (the largest pharmaceuticals supplier to prison systems in the United States) released a study that examined "pharmacy records for all inmates on active antiretroviral therapy receiving medications through Stadtlander Corrections Division between 2-1-99 and 2-28-99." The study, which looked at prisons and jails, found that 36 percent of inmates receiving medications during that month were "on not generally recommended or not recommended antiretroviral regimens," as established by the U.S. Department of Health and Human Services. The study suggests that more than 1,200 inmates who received medications from Stadtlanders were not being treated in the preferred manner. According to Grant Bryson, vice president of operations for Stadtlander Corrections Division, the pharmaceutical company provides drugs to 330,000 inmates, or approximately 17 percent of the total market of 1.9 million.

If Stadtlanders's sample holds true for the rest of the jail and prison population, then approximately 7,400 HIV-positive inmates were not receiving recommended treatment at the time of the study.

But the number may have been much higher. The Stadtlanders study considered only those inmates who were prescribed inadequate regimens. It did not begin to consider cases where prisons or jails failed to deliver medications to inmates or cases where inmates received their medications but did not get them at the appropriate time.

Cary Chrisman, clinical director of Stadtlander Corrections Division, says that treatment rates are improving. Currently, he says, 10 percent to 13 percent of inmates are not receiving the preferred drug regimens.

Advocates and health experts say the problem with delivery of AIDS medications appears to be worse in jails than in prisons.

People who end up in jail often do not have their medications in their possession at the time of arrest. Sometimes, their friends and family members are prevented from bringing those medications to them. Advocates also say that jails have more trouble than prisons establishing regular medical regimens for people with AIDS or HIV because inmates stay in jail for short stints or are transferred to other institutions.

There is an "attempt being made" to practice adequate health care for patients with HIV in the prisons, says Ronald Shansky, a physician who monitors health care in correctional facilities all over the country. "I think you're finding a much bigger problem when they get into a small jail." Shansky cites common jail policies of "confiscating personal property, including medicine," as a problem.

On October 12, 1998, sixteen inmates submitted a grievance letter to the Fulton County Jail in Georgia. "This is an urgent matter related to blatant neglect of AIDS/HIV inmates housed in 3 South 500. We are not receiving adequate medical treatment," they wrote. "We are not receiving antiviral drug therapy medication as prescribed by infectious disease clinics protocol, nor are we being taken seriously about our AIDS related complication.... Our lives are being placed in high risk environment as well as grave danger."

The letter was signed, "The Entire 3500 (3S500) Zone."

"Basically, people are entering the jail at their own risk," says Tamara Serwer, a lawyer with the Atlanta-based Southern Center for Human Rights. Serwer represented inmates in a 1999 lawsuit against Fulton County. Many of these inmates were denied their HIV medication for weeks.

"During the intake process on May 25, 1999, I slept on the floor in an overcrowded, filthy holding cell for two days containing no mattress. I did not receive any medication until July 7, 1999," reads the affidavit of Willie Bass, an inmate at the Fulton County Jail.

The suit led to a settlement agreement to improve jail health care, including adequate treatment for inmates while in the jail and several days' worth of medicine upon release.

Robert Greifinger, a former head medical officer at the New York State Department of Corrections and the New York City jails, now serves as the monitor for the court. On March 2, he filed a quarterly document entitled "Report on Medical Care for HIV-Infected Inmates at Fulton County Jail, Initial Assessment."

"I reviewed the mortality report on inmate W, who died during 1999 with HIV infection," he wrote. "Even after months in custody, he never got to an HIV specialist, and never got medication. His death may be attributable to this delay in access to care. In the case of H, who also died during 1999, there were serious lapses in care. For example, physician orders for medications were never picked up by the nursing staff, and the inmate did not get medication."

Greifinger also looked at the medical care received by women at the jail. "I reviewed the medical care of two HIV+ women who had been sent to the emergency room during the few months preceding my visit," he wrote. "Patient CS had known HIV infection for fourteen years. It took eleven days for her to get her physical examination and then more than 3.5 months to get to the HIV specialist. There is no documentation as to the reason she was not given medication. She was not immunized against pneumonia, as recommended for HIV+ persons. One consequence of this delay was a hospitalization for pneumonia for a week."

Greifinger concluded: "The medical care for HIV-infected inmates at the Fulton County Jail does not meet the expectations set out in the Final Settlement Agreement." On March 13, Greifinger's report led to a consent order to correct "gross inadequacies of medical care."

Shortly after this report, Greifinger filed another, observing that the Fulton County sheriff had replaced Correctional Healthcare Solutions, Inc., formerly in charge of health care at the jail, with another company, Correctional Medical Associates, Inc., and that the place appeared cleaner and better run. The jail was again ordered to improve care. The monitoring process is ongoing.

The new medical provider "is doing what the judge has ordered" so that inmates who are sick when they come to the jail don't "leave us sicker and still untreated," says Captain David Chadd, public information officer of the Fulton County Sheriff's Department.

Meanwhile, a similar suit in nearby DeKalb County, Georgia, is just getting started. "HIV-positive inmates receive a virtual death sentence immediately upon incarceration at the DeKalb County Jail, especially those who are being treated with anti-viral drug regimens prior to their incarceration," says the complaint filed by fourteen inmates. "Such inmates are routinely deprived of such regimens for days, weeks, and even months despite repeated requests for medical attention and despite having made proper jail personnel aware of their HIV-positive status."

The DeKalb County Sheriff's Office denies the charges. "No inmate is deprived of any medical care once incarcerated in the DeKalb County Jail," says Cherlea Dorsey, the public information officer.

Robert Sullivan, of Tacoma, Washington, says a few days in the Pierce County Jail destroyed his health. Sullivan is in the final stages of AIDS. Both he and the jail told the court in a recent lawsuit that he did not receive his medications for at least two days. His wife was finally permitted to bring them in on Sullivan's last day in jail.

"The virus had time to mutate," Sullivan tells me by phone from his home in Tacoma. "I've tried eight different drug combinations since then. Consecutively, the drugs have failed." Sullivan sued Pierce County.

Sullivan, who is 6'2", now weighs 115 pounds. According to his lawyer and his case worker, he came close to dying in early January and was taken off of life support. He is bedridden.

"I don't know how you can tie [the drug failure] to two days in jail without your medications," says Frank Krall, Pierce County deputy prosecuting attorney. "I have a specialist from Swedish Medical Center in Seattle, Washington, who testified that two days didn't do anything to Mr. Sullivan."

Krall agrees that Sullivan did not get his protease inhibitor and antiretroviral medications for two days, but he says that did not result from deliberate indifference. "People need to know that we tried to get Mr. Sullivan his drugs," says Krall. "He got to see a nurse within minutes of getting there. He got to see a doctor within four hours. We contacted his physician."

On April 21, the United States Court of Appeals for the Ninth Circuit overturned a previous decision, which had dismissed Sullivan's lawsuit against Pierce County. The jail had claimed that since it did not stock Sullivan's medications, it was under no obligation to provide them to inmates. The court soundly rejected that argument.

"It is undisputed, that, for at least forty-eight to seventy-two hours, Sullivan was deprived of his medication, although PCDCC [Pierce County Detention and Corrections Center] medical officials knew that Sullivan was in the final stage of AIDS and that he was in dire need of that medication--in particular, his protease inhibitor, Invirase," wrote judges Stephen Reinhardt, David Thompson, and Thomas Nelson. "Both Doctors Flemming and Bay [Dr. Flemming is Sullivan's physician. Dr. Bay is the head physician at the Pierce County Jail], as well as Joyce Newlun, booking nurse at the PCDCC, testified that it was common medical knowledge that an AIDS patient taking protease inhibitors as part of an AIDS cocktail had to remain in strict compliance with that regimen at all times and without exception, lest the cocktail become ineffective."

"It would have been so simple for them to do the right thing," says Sullivan's lawyer, B. Michael Clarke. "All they had to do was have his wife bring in the medicines. And if they had a problem with that, they could have gone down to the drug store. He'd been literally given his life back, and the jail took it away."

Why do some jails and prison persist in providing substandard care?

"Interviews with staff and prison advocates in several major correctional systems indicate that a combination of factors--including high medication costs; inmate reluctance to seek testing and treatment based on denial, fear, and/or mistrust; and uneven clinical competence and lack of uniform treatment standards--may limit the availability of appropriate HIV treatment regimens to inmates," says a July 1999 report sponsored by the National Institute of Justice, the Centers for Disease Control and Prevention, and the Bureau of Justice Statistics.

The U.S. government estimates that costs for antiretroviral therapy run approximately $12,000 per inmate per year.

Says Cohen: "These medications are so expensive that in many cases there is a tremendous incentive to miss them. There should be no financial incentive to limit access to medications or to medical care."

Anne De Groot, co-chair of the HIV Education Prison Project at Brown University, is staff physician at a number of women's correctional institutions. "The system just constantly fails," she says. "It fails because the medicines are not delivered to the prison--so prisoners will get one or two of three drugs. Or the medications will be rationed by inconvenience" when staff have trouble following complicated protocols for obtaining the drugs. "Meanwhile, the treatment is in suspension," and the inmate does not receive medicines.

"I'm giving you examples from some of the places where I work," she says. "I happen to work in some of the best places on the East Coast for care. I don't even want to think about what goes on elsewhere."

De Groot mentions one doctor, whom she describes as "excellent." However, that single doctor, she says, is responsible for all the prisons in a single state system on the East Coast. "If you're taking care of 300 people [with HIV or AIDS] in one prison, then 300 in another, there's no way you can do anything but put out brush fires."

Mistreating HIV-positive inmates can be devastating to the afflicted. But the effects are not confined behind prison walls.

"Failure to adhere consistently to the regimens may have serious public health consequences if drug-resistant strains are transmitted to others," says the July 1999 report from the National Institute of Justice, the Centers for Disease Control and Prevention, and the Bureau of Justice Statistics.

"This is going to create an enormous public health crisis on the outside--as well as inside the prisons," says Cynthia Chandler, director of the Women's Positive Legal Action Network in Oakland. "It would not surprise me if we start finding large amounts of drug-resistant HIV as a result of people coming back into their communities after having been denied their medications while in prison."

Anne-Marie Cusac is Managing Editor of The Progressive. This article was made possible in part by a grant from the Fund for Investigative Journalism, Inc. `