A federal prisoner in Indiana set for release next month stopped receiving treatments for a rare blood disorder after prison officials accused him of attempting to make unauthorized contact with a healthcare worker.

Demitrius Manderfield, 29, has not received blood transfusions for sickle beta thalassemia since January, when officials at the U.S. penitentiary in Terre Haute said he tried to pass a message to a specialist providing treatment, according to medical records and other documents reviewed by WFIU/WTIU News.

Read more: How federal prisons stonewall grievances

"I signed my own death certificate when I did that," Manderfield wrote in an April letter from the Special Housing Unit, or SHU, where he has been in disciplinary segregation. "I know I'm not going to make it, if I feel this bad now," he wrote.

The night before, Manderfield wrote, medics transported him to the emergency room at Union Hospital after a cellmate alerted staff that he had collapsed after complaining of severe chest pain. Manderfield had a seizure, he wrote, and corrections officers wheeled him to a holding cell around midnight. He waited about eight hours until medical staff clocked in the next morning.

After determining he had dangerously low blood pressure, medics transported him to hospital, he wrote. More testing found Manderfield had low hemoglobin levels but he still did not receive a transfusion.

Graphic by Joanie Dugan

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WFIU/WTIU News

Over the past nine years in federal custody, Manderfield was usually able to receive them about every three weeks, even at Terre Haute. He once went without transfusions for a shorter period about 10 years ago while in pre-trial custody in Michigan, where he later pled guilty in federal court for his role in a scheme to sex traffic a minor.

The discontinued procedure, called red blood cell exchange, is used to remove faulty, sickle-shaped cells and replace them with healthy ones that can more efficiently transport oxygen throughout the body. Without the treatments, faulty cells build up and can restrict blood flow. Patients may experience severe pain virtually anywhere in the body, among a variety of other symptoms. They also become more susceptible to life-threatening conditions such as strokes or seizures.

"You have to do it consistently. Otherwise, the effect is lost," according to Dr. Andrew O'Brien,  an adult hematologist and co-director of the Lifespan Sickle Cell Disease Center at Indiana University and IU Health.  "Over time, those transfused cells are going to die off, and the patient's own cells are going to come back."

How often transfusions are needed will vary patient to patient but a typical schedule might be every four to six weeks, O'Brien said.

Figuring out that routine is an important element of treatment. But it requires ongoing evaluation by a team of sickle cell specialists, he said. And that level of care is not available even at most hospitals. In prison, it's nonexistent.

"That becomes particularly challenging in terms of being able not only to get them appropriate treatment, but also to be able to have good communication and good insight into what they're dealing with day to day, being able to get them access to appropriate emergency care, appropriate urgent care," he said.

"Those types of interventions are generally not available to people who are incarcerated or even people on parole or house arrest. It can be very challenging," he said.

In letters to family members since March, Manderfield has described experiencing episodes of extreme and uncontrollable pain.

"I just got two letters from Meech saying he is in so much pain that he can barely write. It’s so heartbreaking," Manderfield's mother Tia Sumner said, using his nickname.

Until this year, Sumner said, he received transfusions every three weeks "like clockwork" since he was four years old, with only a handful of exceptions.

"If he skips one, we are talking excruciating pain crisis, strokes, acute chest syndrome," she said. "That blood literally keeps him alive."

Last September, prison staff told her that Manderfield had refused to go to the hospital for a transfusion, according to a copy of an email Sumner provided. At that time, she could communicate with her son by phone or email and pass along information about changes to his condition the same day, although she rarely got a response.

Recently, however, officials stopped allowing them to use phone or email. It also removed other relatives' numbers and email addresses from Manderfield's approved contacts, apparently over Sumner's role in the unauthorized communication incident. According to Sumner, the prison opened its investigation after she sent a message to a Facebook friend of one of her son’s care providers, at his request.

“ I made a grave mistake that I didn't realize was a mistake. He called me and he said, ‘Mom, I met this nice girl up at the hospital that I go to. I would love to be able to get her a phone number.’ And in my mind, ‘Oh, that's so cute. I'm so glad you found someone’,” she said. “I found a friend of hers and I sent her a message and said, ‘My son would love to get your friend's phone number’.”

Sumner said she received a letter about a week later informing her of the investigation, and the prison cut off phone and email access in March. They also removed Manderfield's sister from the approved list, she said.

Sumner said that after learning more about prison policy, she now understands why inmates aren't allowed to communicate with people on social media, especially those they encounter in healthcare settings. But she said that doesn’t justify withholding medical care from someone with such a serious illness.

“You didn't sentence him to death, you sentenced him to 10 years,” she said. “I don't think you get to play the judge, jury and the executioner, you know?”

By April, she and her son were communicating exclusively through written letters, which sometimes took weeks to be delivered in either direction. Manderfield wrote that he was becoming increasingly hopeless the longer he went without the transfusions.

“When he said that he had a seizure, it was pretty bad. In his letter, basically, he was telling us that he was going to die and this was it. And he wanted us to know that he loved us,” she said.  “He thinks this is the end for him, honestly.”

Graphic by Joanie Dugan

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WFIU/WTIU News

Choking back tears, Sumner read from a letter in which Manderfield apologized for the crime that landed him in prison and for the distress his confinement has continued to cause his family. Manderfield wrote that he wished he had had the opportunity to prove that he had changed and was a better person now.

“I’m literally lost, I feel terrible,” he wrote in that letter, dated April 8. “If I feel this bad now, there is no way I’m gonna last three more months.”

A prison bureau representative did not directly address inquiries from WFIU/WTIU News about Manderfield’s condition or explain why his transfusions were being withheld.

In an unsigned email, the sender provided a link to a website with instructions for filing a Freedom of Information Act request.

“I trust this has addressed your concerns,” the person wrote.

Compassionate release

Last month, U.S. officials shared limited information about Manderfield's situation in court filings, much of it under seal.

The filings were in response to a petition for compassionate release under the First Step Act, filed in U.S. District Court in the Eastern District of Michigan, where Manderfield received his sentence.

Judge Judith Levy denied the request on procedural grounds, saying Manderfield had not exhausted all internal grievance procedures. But she left open the option for him to make a new request after finishing the process.

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Before ruling, Levy ordered the U.S. attorney's office in Detroit to explain discrepancies between its representations about the treatments Manderfield was receiving and information in the prison bureau's records.

Earlier, the U.S. attorney, citing information from the bureau, informed the court that Manderfield was not being denied transfusions and, moreover, he had three hematology appointments scheduled for May, June and July.

But Levy noticed that the prison's own medical records showed all three appointments had been discontinued. She ordered the U.S. attorney to explain.

Its office acknowledged that the appointments had been canceled, again noting the information came from the prison bureau, which it quoted in response. It said the bureau canceled the appointments after an outside provider determined Manderfield no longer needed transfusions.

“Inmate Manderfield does have sickle cell thalassemia and does receive regular transfusions. These transfusions often occur during monthly visits to the local hospital, but this is not always necessary,” the response said.

It said the specialist determined Manderfield did not need a transfusion during an appointment in March. And in April, at his visit after collapsing in his cell, the same specialist made the same decision.

The bureau concluded: “As a side note, Manderfield was being investigated for inappropriate communications with medical staff. However, outside providers at Union Hospital would not be aware of that investigation unless informed directly by Manderfield. Furthermore, ongoing investigations have no bearing on whether inmates receive medically necessary care.”

Manderfield's projected release date is July 13.

Cathy Knapp contributed to this report.