Imagine being handcuffed by police, waiting to be whisked away by a patrol car, with your life-sustaining diabetes supplies just out of reach…

Or think about already being in custody behind bars, without access to the insulin and rescue glucose you need to live. What if you were screaming for help, but your calls for medical assistance were ignored by the uniformed people standing guard?

Unfortunately, these situations are very real and not uncommon. They’re being highlighted more often these days, not only with #BlackLivesMatter protests pushing for police reform, but also in some high-profile lawsuits challenging that jails and prisons are not equipped to handle diabetes care appropriately — which can be life threatening depending on how long the experience or incarceration lasts.

In fact, police discrimination and excessive force against those with diabetes and other disabilities has been a long-standing issue, even reaching the Supreme Court of the United States (SCOTUS) with a landmark 1989 court case involving alleged mistreatment by police officers of a Black man with type 1 diabetes (T1D) who was experiencing a low blood sugar incident at the time.

But 2020 has brought this to the forefront again, with the COVID-19 pandemic and widespread protests to reform police departments across the United States. Now, some cases of people with diabetes suffering during arrests and incarceration are making the news once again.

During the early protests following the brutal police murder of George Floyd in Minneapolis, the story emerged on social media of 20-year-old Alexis Wilkins in Cincinnati, who was arrested but couldn’t get her medical bag with needed pump supplies and insulin.

As she and some friends were being detained by officers, she apparently told the officers about her T1D and need for insulin, kept in her bag that was still located in the nearby car. But they didn’t immediately listen, and though she was separated from her bag for only about a half hour, the incident highlighted the dangers of what could’ve happened had those officers not later listened and allowed her access to the supplies, especially if she was taken into custody for a longer period of time.

Wilkin’s story and the potential consequences later went mainstream in this August 2020 article in The Nation, written by a fellow T1D advocate named Natalie Shure.

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A video of Alexis Wilkins’ arrest in June 2020 went viral. Image: Cincinnati Enquirer

In late July, the Minneapolis Police Department and local paramedics entered the fray with horrible treatment once again. They sent a man named Max Johnson to the ICU for two days after injecting him with the powerful sedative ketamine, not recognizing that he was experiencing a diabetes-related seizure at the time due to a low blood sugar.

His girlfriend called 911 about the low blood sugar reaction, but the police and paramedics instead resorted to violence and sedative use, accusing Johnson of drug use rather than listening to his girlfriend explain it was a medical emergency.

“This happened because Max is a 6’5” Black man,” his girlfriend wrote in a Facebook post about the incident. “My whiteness was not enough to save him from the Hennepin Healthcare EMS and MPD’s egregious racism and life-threatening decisions.”

Many believe that people with diabetes face clear and present danger when it comes to facing police — especially people of color living with diabetes.

Of course, the handcuffs and initial arrest are just the first part of the story. Once you’re behind bars, things oftentimes get a whole lot worse.

There is no definitive data on how many people with diabetes (PWDs) are part of the prison and jail population across the United States. But a decade ago, the American Diabetes Association (ADA) estimated that of the total 2 million individuals incarcerated nationwide, there were likely 80,000 living with diabetes.

The ADA points out that diabetes care is often denied to people in short-term custody, but that it’s even more problematic for those in long-term incarceration within the prison system. Stories have popped up in the news for years highlighting examples of this, and in 2019 the Atlantic Journal Constitution newspaper published a first-of-its-kind investigation finding a dozen diabetic ketoacidosis (DKA)-related deaths in Georgia jails and prisons, most likely a result of inadequate diabetes care.

In 2017, a trio of federal lawsuits were launched against the country’s largest private for-profit prison company, CoreCivic. That company runs the Trousdale Turner Correctional Facility, one of Tennessee’s newest and largest prisons, and the place where several incarcerated PWDs made accusations of not receiving adequate care; a few even died.

The ADA tried to intervene in these lawsuits, saying they could represent all the other PWDs out there who currently do or possibly could face similar situations across the country. But the federal judge denied that request for the ADA to get involved, setting a precedent for limitations on how advocacy organizations can get involved when claims of this sort arise.

In the respective lawsuits against CoreCivic, many of the claims mirrored each other.

In a lawsuit filed in 2018 over the prior year death of inmate Jonathan Salada in Tennessee-based Trousdale Turner Correctional Facility, autopsy records filed with the court show he had dangerously high blood sugars that any PWD or medical professional knows can lead to excruciating pain. Yet, his official cause of death is listed as an overdose of a prescription opioid painkiller, while diabetes is noted only as a contributing factor. Salada’s family filed the lawsuit alleging that prison staff left him screaming in DKA-level pain for hours in his cell, without access to insulin in the days before his death.

Eerily, he’s not the only PWD who has died in that same facility over the past few years, and the official reports of both point to drug use as the main cause of death. Inmate John Randall Young was found unconscious in his cell in March 2018 and died soon after at a nearby hospital, following similar claims about inadequate D-care in that prison. But after his death, he was removed as a plaintiff in the lawsuit over healthcare, because his autopsy showed drugs in his blood, including meth and antidepressants.

Meanwhile, the main lawsuit the ADA asked to join involved PWD inmate Douglas Dodson at Trousdale, a lead plaintiff in a class-action lawsuit filed in the Middle District of TN court. The group suing CoreCivic alleged that 60 PWDs incarcerated there at one point -— and by extension, any inmate with diabetes -— faced daily risk to their health because of unhealthy food, unpredictable meal times and unreliable access to insulin shots. They claimed the wait-time for insulin alone could be hours beyond when PWDs are supposed to receive injections, a result of both insufficient staffing but also frequent lockdowns when routine medical care is suspended.

One hand-written letter within the court filings described in detail the kind of insufficient D-care happening at that federal prison facility:

“For the past two-and-a-half weeks we have been on lockdown, and it has been several evenings that we have not been called in to the clinic to get our insulin,” Dodson wrote on his prisoner complaint form, an exhibit included in the lawsuit. “I know my insulin is keeping me alive and I really need it every day. This has went on long enough here at this facility.”

A third case filed in 2016 involved former Trousdale inmate Thomas Leach, who had similar claims to the ones Dodson’s group made in their lawsuit.

In all three lawsuits, CoreCivic denied doing any wrongdoing. The Dodson case was closed in July 2019, with the prison company being required to properly train staff and correctional officers — language was inserted into employee training manuals — and to ensure that inmates were escorted to a separate area 30 minutes before each mealtime for a glucose check and any needed insulin dosing or other medications. CoreCivic was also required to pay the inmates’ attorneys’ fees and costs associated with the case.

Amazingly, the private prison company insisted that the PWD-plaintiffs in these class action cases are responsible for their own diabetes complications. That’s an incredible assertion to make, given that prisoners have so little freedom or access to needed care or medications.

“Just as children depend on adults to assist with their diabetes care, individuals who are incarcerated are at the mercy of prison staff to provide them with access to the health care tools, medications, and reasonable accommodations necessary to manage their diabetes,” the ADA’s litigation director Sarah Fech-Baughman said in a news release. “These individuals do not have access to appropriate medical care and have been subjected to discrimination on the basis of their diabetes. The ADA challenges both of these issues on behalf of this vulnerable population.”

In trying to get involved in these cases, the ADA hoped it would be allowed to participate on behalf of all PWDs who might be at risk for this type of poor care behind bars. The ADA pushed for a ruling that would set standards to force all CoreCivic locations to improve diabetes care for all prisoners — at their more than 65 state and federal facilities across the United States.

But in the end, the ADA was not allowed to intervene, and CoreCivic got little more than a finger-wave as a consequence. Clearly this issue of shoddy diabetes care in prisons and jails across the country remains.

Previously, DiabetesMine talked with a D-Mom named Laura (last name withheld) in Minnesota, who was facing the heartache related to her son’s incarceration. She shared the story about an alleged lack of diabetes care in a federal correctional facility in Milan, Michigan, where her son J was the only inmate with T1D imprisoned there. At the time she shared her story in 2018, her son was in his mid-30s and had been behind bars for 5 years for an armed robbery sentence.

Diagnosed with T1D at age 8, her son had maintained good care of himself with A1Cs in the 6 percent range before incarceration. But prison pushed that A1C above 8 and later into the double digits, and he experienced several severe bouts of hypoglycemia requiring prison paramedics. J regularly struggled to get even basic glucose checks and insulin injections, because the prison didn’t administer insulin more than twice a day; they also did not have rapid-acting insulin, only the older regular (R) insulin that is more volatile and takes longer to work. It took her son 5 months to be allowed insulin at lunch time, Laura explained, after repeated requests verbally and officially in writing.

“As long as he is walking and breathing they see nothing wrong with him,” she says.

Due to these circumstances that she described as “bare minimum” care behind bars, her son developed diabetes complications — compounded by the reality that proper eye exams and dental care were also an issue, she said.

“This is a huge problem. Law enforcement and prison systems operate in their own closed system and seem to answer to no one. Every day, I am scared for my son’s life because of the lack of understanding about type 1 diabetes in these systems,” Laura said.

While the Federal Bureau of Prisons (BOP) does have a document outlining clinical guidelines for the management of T1D and type 2 diabetes (T2D), the practical aspects of care to be offered by correctional facility staff are minimal, and that certainly doesn’t appear to be universally enforced or tracked.

The answer from some of those who monitor this within the D-Community: not nearly enough.

“Unfortunately, it’s a hodgepodge of progress and it’s all over the place,” the ADA’s legal advocacy director, Katie Hathaway, told DiabetesMine previously. “It’s hard to assess if there’s been a lot done, but what I can say is that this problem certainly isn’t fixed.”

Way back in 2007, the ADA released a 20-minute training video to help address the issue of police encountering diabetes emergencies (available on YouTube in three parts). That video stemmed from a Philadelphia lawsuit settlement and served as a jumping off point for the advocacy organization to target this topic nationally. Many police departments did request the video and used it in training, but those requests eventually dwindled.

Essentially, all the 2007 video covers are the basics about what officers should know about how to recognize the signs and symptoms of hypo and hyperglycemia, and differentiate those from the effects of alcohol or drug use. The video includes two “real-life” scenarios:

  • One features a woman sitting in the passenger seat of an SUV after the driver has pulled over in front of a school and jumped out to get some juice for her D-friend (leaving her by herself to encounter police in a confused fashion, of course).
  • A second example shows a man being arrested and taken to jail, and questioned there about his diabetes. He later has a high blood sugar episode (hyperglycemia) due to lack of insulin and needs to be taken to the hospital.

What the video does not feature, though, are the most common situations police officers might face dealing with PWDs. For example, making on-the-fly decisions about what’s happening when someone is swerving all over the road, or if they come up against a seemingly violent, arm-swinging individual (who happens to be hypoglycemic).

The ADA told DiabetesMine that over the past decade, its policy training resources on these topics reached 400+ law enforcement agencies in 30+ states by sharing, and they’ve also educated attorneys around the country on the legal issues involved through focused webinars. The org also compiled comprehensive printed materials for both law enforcement and for lawyers.

Given the civil activism wave of 2020, PWDs may want to check out the American Civil Liberties Union (ACLU)’s resource guide for those protesting, to know your rights when encountering police. See also: Beyond Type 1’s Guide to Protesting Safely with Diabetes.