“Medical is a joke,” said Davide Coggins, currently imprisoned at Great Meadow Correctional Facility, a maximum-security prison in New York’s Washington County. “Unless you have diabetic issues or something simply attended to, you will suffer and decay before you get some type of treatment, if any.”

The 42-year-old has Crohn’s disease, an inflammatory bowel disease that can lead to abdominal pain, severe diarrhea, fatigue, weight loss, blood clots, colon cancer, and, if left untreated, fatal complications. Three intestinal resections have left Coggins without parts of his colon. He attributes the severity of the ailment to prison conditions. “I’ve had issues in and out of prison,” he told The Nation and New York Focus. “But the vast majority of my complications came while incarcerated.”

Coggins has little control over the food he can access. “I have found, after dealing with this for over 20 years, that the best (and cheapest) way to deal with my condition is to eat five or six times a day and keep things flowing through my digestive tract,” he said. “Things like rice, hot dogs, bread, fish, etc., cause me little to no issues. The right diet could solve nearly all my issues and cost the prison system virtually nothing.”

State prison policy allows for medically modified meals, such as a short-term soft diet for people with gastrointestinal issues, if requested by prison health staff. But Coggins says he is given the same food as everyone else—meals that consist largely of soy-based products and dairy, neither of which he can digest.

Coggins has been scheduled to see gastrointestinal specialists multiple times—often, he adds, months after he requested the appointment. But because of his missing colon, he cannot handle being transported for eight to 12 hours while handcuffed and shackled without reprieve, and has only been able to see specialists twice. At both visits, he said, the doctors had the same recommendation: Transfer him to a medical unit. Nonetheless, he remains at Great Meadow.

Last year, Coggins’s condition worsened, necessitating four different stints in the prison’s infirmary as well as several days at the Albany Medical Center.

“People who need specialized care, individuals who have unique needs or unusual needs, are suppressed and ignored until they learn to live with the regular routine, or just die off,” he said. “Complain, and you are a ‘troublemaker’ and are made even more miserable and are harassed on all levels. That’s just the way it is. And there’s no one to complain to who cares.”

For over a year, Coggins has repeatedly requested transfer to a prison better equipped to address his medical needs. It was not until he filed a notice of intent to sue the prison agency that prison officials told him he had been approved for a medical transfer. But by then, the Omicron outbreaks had halted all prison transfers.

The Department of Corrections and Community Supervision (DOCCS) told The Nation and New York Focus that, while the agency cannot comment on an individual’s medical condition or care, Coggins does not have an existing transfer order.

An Erosion of Care and Trust

Medical care has long been a common complaint in jails and prisons. In 2019, the Correctional Association of New York (CANY), the state’s legally designated independent prison monitor, found that only 32 percent of people in New York prisons were satisfied with the medical care they received. More than half said they left prison medical appointments with their concerns untreated. Among incarcerated women, 71 percent said they avoided medical treatment to avoid inappropriate treatment. And while DOCCS has a policy for transgender health care, the Sylvia Rivera Law Project, an organization representing trans and gender-nonconforming New Yorkers, found that the directive is rarely followed, leaving its clients unable to access gender-affirming care behind bars.

“Medical care has always been perceived as inadequate,” said Jennifer Scaife, CANY’s executive director. For incarcerated people, she continued, these perceptions stem from delays in treatment, being told to take over-the-counter remedies instead of receiving diagnostic tests for potential underlying conditions, being treated for the wrong condition, being treated poorly, and being accused of faking illnesses.

The pandemic further eroded both medical care in prisons and what little trust incarcerated people had in prison staff. In its monitoring visits to eight New York prisons between 2020 and 2021, CANY found that four in 10 incarcerated people reported being unable to access medical care. Nine in 10 incarcerated people said they didn’t trust prison medical staff to make decisions in their best interest or to make medically correct judgments.

For years, lawmakers have sought to improve prison health care by enabling the state’s Department of Health to monitor and oversee more aspects of prison health care. They point to the success of a 2009 law that allows the health department to review prison and jail practices regarding HIV, AIDS, and hepatitis C, and to direct correctional facilities to bring medical policies in these areas into accordance with professional standards. That approach, lawmakers say, has markedly improved HIV care in prisons and provides a model for broader oversight.

In 2019, both chambers of the legislature passed a bill to expand that oversight to a far broader set of incarcerated patients: women, transgender people, people with chronic health conditions, and the elderly. But it was vetoed by then-Governor Andrew Cuomo.

The following year, legislators tried a narrower bill that would permit health department oversight only over “emerging infectious diseases.” In December 2020, Cuomo agreed to sign the bill on the condition that legislators file a chapter amendment further winnowing the health department’s oversight solely to Covid-19. Legislators did so in January 2021.

In March 2021, legislators once again tried to expand health department oversight, reintroducing the 2019 bill. The state Assembly included the proposal in its proposal for the 2022 state budget, though the state Senate did not.

Assembly Health Committee Chair Richard Gottfried, the bill’s lead sponsor, said that current health department oversight is “far too narrow.” Expanded oversight, he said, is necessary to make good on New York’s “moral and legal obligation to ensure high-quality health care for incarcerated people.”

The Benefits of Oversight

In New York City, medical care behind bars is administered by the city’s health and hospital system, the same agency responsible for medical care outside. But that’s an exception to the rule: Health care for the incarcerated is usually administered by jails and prisons themselves.

The 2009 oversight law gave the state health department the ability to not only review policies but also develop protocols and procedures around HIV and hepatitis C (HCV) care. These new responsibilities were delegated to the AIDS Institute, which had already been providing services in New York prisons since the 1990s.

That oversight is widely credited with significantly improving medical care for incarcerated people with HIV. In 2015, the health department matched the health information available about people in state prisons with names in its HIV surveillance registry to identify people who were not receiving care. It found that nearly 90 percent of people with HIV had already been identified by the DOCCS and were receiving care.

The remaining 10 percent comprised 117 people who had tested positive before imprisonment but had not been tested while in prison, and thus were not receiving HIV care. The oversight law allowed health department staff to approach those individuals—independently of prison staff, and without informing prison officials of incarcerated people’s HIV status without their consent—to discuss the importance of testing and treatment to suppress their viral load and thus reduce their risk of transmitting HIV in prison and after release.

That’s a sharp contrast from just two years earlier, when the health department found that at least half of people with HIV/AIDS had not disclosed their status—or sought care from—prison medical staff. That was largely a result of the overwhelming stigma of HIV and AIDS, resulting in ostracism and, in some cases, violence toward people believed to be HIV-positive. The department also cited concerns about the lack of confidentiality, including inadvertent disclosures of a person’s status, and perceptions of poor medical care behind bars.

Now, the viral suppression rate of people living with HIV in New York’s prisons is better than that in the outside community, according to Tracie Gardner, senior vice president of advocacy at the Legal Action Center, a nonprofit litigation and advocacy group for incarcerated and criminalized people.

Hepatitis C care in prisons has also improved in recent years. In 2017, DOCCS began testing all people entering state prisons for HCV, instead of its previous policy of limiting testing to people born between 1945 and 1965 subject to by certain risk factors.

Prisons now offer the most current HCV treatment to those who test positive. In 2018, 1,515 people tested positive and 730 received HCV treatment. In 2019, 43 additional people tested positive, and DOCCS approved 978 people for treatment.

Watchdogs attribute these results to discussions between public health and correctional health officials, part of the health department’s oversight.

“HIV and hepatitis C [treatment] are some of the best elements of DOCCS health care,” said Jack Beck, who spent 14 years monitoring prison conditions as director of CANY’s Prison Visiting Project. “It’s because of the engagement of the health department and the AIDS Institute in creating protocols, monitoring and getting attention to it. There’s a real differential between hepatitis C and HIV care and [care for] other chronic conditions.”

“Having health professionals engaged is better than DOCCS trying to do it alone,” Beck said.

“They Didn’t Drop the Ball on That”

In 1997, 12 years before the oversight law, Ulysses Boyd tested positive for hepatitis C while at Green Haven Correctional Facility.

Earlier that year, he had joined Prisoners for AIDS Counseling and Education, an AIDs peer counseling prison program. Participants actively tried to educate themselves and others about HIV and hepatitis C, inviting outside doctors and health providers to give workshops, then passing that information on to other incarcerated people.

Boyd, then 42 years old, sought treatment. But for nine years, he said, his requests were denied because he was “too healthy.”

In 2006, Boyd went through a combination treatment of Pegasus and interferon, then the standard treatment, which had brutal side effects and a low success rate. The treatment failed.

In 2013, the US Food and Drug Administration approved two antiviral medications (simeprevir and sofosbuvir), which have a 90 to 95 percent success rate. Two years later, Boyd was approved for the new treatment. It worked and he has remained hepatitis-free ever since.

“They did a great job taking care of the people at Green Haven with hepatitis C,” Boyd said. “They didn’t drop the ball on that.”

That wasn’t the case for other medical issues. By the time Boyd was released in September 2021, after being granted clemency by then-Governor Cuomo, the 65-year-old had developed a range of medical problems from over three decades in prison and from the constant delays in medical treatment.

He had contracted Covid and pneumonia, neither of which were diagnosed or treated for a week, despite his constant complaints, he said. They left him with damage in one lung and a persistent cough, he said. He has two cysts in his pancreas, for which the prison never scheduled a colonoscopy, he said, and he also needed but never received knee replacement surgery.

“Overall, the care for those of us in DOCCS—they are dropping the ball,” Boyd said.

A New Governor

Of the roughly 30,500 people currently in DOCCS prisons, about 7,300 are over the age of 50, nearly 1,200 are women, and close to 200 are transgender—all populations that could benefit from additional oversight from the state health department. Among people with chronic conditions in the state’s prisons, over 3,000 have diabetes, 646 have heart disease, and nearly 5,000 have asthma. (These numbers overlap, as some individuals have more than one condition.)

At Great Meadow, Coggins agrees that DOH oversight could improve medical care. “I think it would be a good idea if an outside agency had review authority over DOCCS’s medical,” he told The Nation and New York Focus. “It would likely change some treatments and such for the better. That would depend on how the oversight and involvement was accomplished.”

Although the DOH has the authority to conduct site visits to monitor DOCCS procedures regarding Covid, officials told The Nation and New York Focus that they have conducted no visits, and have not reviewed medical records of individuals who have received care for Covid.

The DOCCS told The Nation and New York Focus that the two agencies collaborated on developing the program in which asymptomatic people are randomly tested for Covid.

The health department is currently reviewing the DOCCS’s most recent Covid-19 pandemic plan, detailing its policies and procedures. The agency noted that the law requires it to create a public report of its review of that plan and to notify the public of any such review prior to when it is conducted.

Gardner expressed optimism that efforts to promote oversight could fare better under a new governor. Cuomo vetoed lawmakers’ attempts to expand oversight; perhaps Kathy Hochul will be more amenable. If so, she said, it would be long overdue.

“There needs to be a discussion of the level and quality of care that people get when inside,” Gardner said. “In New York, that will not be addressed until there is more ownership of health inside by the health care system.”

Correction: A previous version of this article stated that the 2020 oversight law did not require the state’s Department of Health to create a public report and notification period, but the law does in fact require it to do so.