“What happened to me has elements of both a sexual crime — it’s inhibiting my reproductive rights — and elements of a racist crime — I feel I was targeted because I suffer from a genetic condition that predominantly affects African Americans.”
These are the words of Zacharie Liman-Tinguiri, who was nine months old when he was first diagnosed with sickle cell disease. In 2015, as an adult, he was admitted to a clinical trial led by Dr. Javier Bolaños-Meade at Hopkins Hospital with hopes of being cured. The treatment, however, did not end as he expected.
In August of 2017, Liman-Tinguiri was diagnosed with primary testicular failure. Although he was cured of sickle cell, Liman-Tinguiri believes that he was intentionally sterilized in the process.
He originally published his story online. In an email to The News-Letter, Vice President of Communications for Hopkins Medicine Kim Hoppe noted that the Hospital is aware of Liman-Tinguiri’s website, which is anonymous.
“We take very seriously any allegations of inappropriate care and rigorously review protocols, informed consent documents and communications as well as outcomes,” she wrote. “The study referenced on this website involved an informed consent process including a discussion about possible risks and resulted in the following reported outcomes.”
The Hospital has not acted on Liman-Tinguiri’s request for an investigation.
Due to the intimate nature of fertility, Liman-Tinguiri was initially hesitant to go public with his story. He did, however, share the website with Bolaños-Meade. As of publication, Bolaños-Meade has not responded to Liman-Tinguiri.
In addition, The News-Letter reached out to the team that treated Liman-Tinguiri — Bolaños-Meade, as well as Dr. Stephanie Terezakis and Dr. Omar Mian. They did not respond to The News-Letter’s request for comment, as patient confidentiality ethically and legally prevents them from recounting their version of events.
The Me Too movement and subsequent Black Lives Matter movement inspired Liman-Tinguiri to share his experiences with The News-Letter by name.
“I would not be doing everything I’m doing currently if the message had been ‘You're going to get cured of sickle cell, and you’re going to be permanently infertile,’” he said. “I have been deceived. It’s a betrayal of trust.”
The Search for a Cure
Liman-Tinguiri’s search for a cure began in 2012 while working in London. However, in the U.K. curative procedures for sickle cell were only beginning to be developed for children; Liman-Tinguiri was too old.
He then traveled to France, where doctors were experimenting with bone marrow transplant (BMT) protocols for sickle cell patients. Once again his case was rejected because it was not considered severe enough to qualify for an experimental trial. At this point Liman-Tinguiri took his search to the U.S.
When Bolaños-Meade of Hopkins Hospital admitted him into the clinical trial in 2015, Liman-Tinguiri was ecstatic. Over the course of the trial, he underwent total body irradiation (TBI) as well as chemotherapy to prepare for the eventual BMT that ultimately cured him.
Liman-Tinguiri was especially excited to be a part of this trial because none of the donors in the bone marrow registry were matches for him, and both his siblings were only half matches for him. Without an exact match, Liman-Tinguiri would have been at risk for complications during the BMT. In Bolaños-Meade’s trial the use of TBI and chemotherapy was meant to mitigate those risks.
However, Liman-Tinguiri never thought the procedure would leave him infertile.
He was aware, he said, of the impact TBI can have on a patient’s fertility and that he signed an informed consent form on this issue. He reported, however, that his doctors frequently told him that he would eventually regain fertility.
“At no point was I told ‘This will cure you of sickle cell and make you permanently infertile.’ Having seen hundreds of doctors in my life, I am perfectly comfortable hearing the hard news,” Liman-Tinguiri said. “Any honest surgeon is going to start by telling you everything that could go wrong.”
“I was deliberately misled”
Knowing that TBI could impact his fertility, Liman-Tinguiri hoped to store his sperm in a sperm bank, where it would remain frozen as a fallback option for having children later in life if the procedure did leave him infertile.
Liman-Tinguiri was surprised when his doctors informed him that the Hopkins sperm bank was full and that he would be unable to store his sperm. His family had already traveled internationally to be with him in Baltimore, since the BMT had been planned for six months.
Liman-Tinguiri decided to proceed with treatment; he was not willing to postpone his procedure for months until the next availability.
“I was surprised for a few reasons: Why would a sperm bank be full? How can a sperm bank reach capacity overnight?” he said. “The element of surprise for me was that I was told the sperm bank was full at a time when I did not have much time to prepare other alternatives.”
However, he took it upon himself to research alternative measures of fertility protection.
He came across the practice of testicular shielding as a way to preserve fertility in TBI patients. Liman-Tinguiri contacted Dr. John M. Holland, a professor of radiation medicine at Oregon Health & Science University who has published articles on the practice, asking if testicular shielding was feasible in his case.
Holland responded to his inquiry, telling Liman-Tinguiri that testicular shielding was in fact an option. Holland also sent him an article on the practice of testicular shielding, which Liman-Tinguiri shared with his team of doctors at Hopkins.
However, Liman-Tinguiri’s doctors — Bolaños-Meade, Terezakis and Mian — told him that testicular shielding was not a viable option.
“They told me I could not use testicular shielding because it would require that Johns Hopkins build a whole new separate apparatus, a process that would take two weeks, which was beyond the timeframe of my scheduled radiation session. They said to just stick to the protocol,” Liman-Tinguiri said.
Specifically, they told him that using a testicular shield during TBI could lead to autologous reconstitution of his bone marrow, which would interfere with the effectiveness of the treatment. Because of this, coupled with timeline concerns, Liman-Tinguiri agreed to continue with the treatment without additional protective measures.
It is only because of conversations with physicians since the clinical trial that Liman-Tinguiri has come to believe that the information his doctors at Hopkins gave him was false.
“I was deliberately misled in being told that the shield was going to interfere with the treatment,” he said. “My current physician explained that for nonmalignant cases, testicular shielding is routinely used, and it does not compromise on the outcome of the process.”
In an email to The News-Letter, Holland highlighted that the 2007 study referenced in his paper found that standard external beam testicular shielding, which uses a two-sided clamshell, can increase the risk of losing fertility in TBI patients because the apparatus causes scatter radiation that can increase radiation dose to the testicles.
However, the study found that for patients undergoing TBI, a single five-centimeter lead shield can be used to shield the testicles effectively.
Furthermore, Liman-Tinguiri has since discovered that the Hopkins Hospital offers testicular shielding to its patients.
“When I had shared his article with my doctors at Hopkins, they pretended that they would need a special build, but apparently it is standard technology across U.S. hospitals, including Johns Hopkins,” he said. “That is the moment when I really felt that I had been deceived.”
Hoppe noted that while the Hospital does have shielding technology, it is offered in cases where the radiation is targeted at a particular part of the body.
In an email to The News-Letter, Assistant Professor of Radiation Oncology and Molecular Radiation Sciences Dr. Jennifer Vogel emphasized that, despite its appearance on the website, testicular shielding is not standard at Hopkins Hospital for TBI patients.
“There is no universal technique to provide testicular shielding during total body radiation and no long-term clinical data that shows improved fertility outcomes with testicular shielding as compared to without,” she wrote. “Given these considerations, we typically encourage patients to pursue fertility preservation prior to any transplant.”
In Liman-Tinguiri’s case, pre-operation fertility preservation in the form of a sperm bank was also unavailable. Liman-Tinguiri feels deceived by his team at Hopkins.
“This is their life’s job. They are smart individuals,” he said. “I cannot believe that they believed what they told me was true in good faith.”
Because his doctors told him that the sperm bank was full, and knowing that testicular shielding is regularly provided and would not have caused autologous reconstitution of his bone marrow, Liman-Tinguiri believes that he was purposefully and unnecessarily sterilized by his doctors at Hopkins Hospital. Their intent, he argued, was eugenic in nature.
“If I try to understand why they would deliberately tell me things that are false, that would permanently damage my fertility, then I have to explore the possibility that they believe that I should not have any fertility,” he said. “I do believe that there is a eugenic motivation in the amount of misinformation and the withholding of medical technology that I experienced.”
Liman-Tinguiri noted that the U.S. has a complicated — and recent — history of allowing eugenic practices. He highlighted Buck v. Bell, the 1927 Supreme Court case that ruled Carrie Buck could be legally sterilized on the claim that she was “feebleminded.”
“It’s not something that has been resolved, in the sense that the Supreme Court decision that upheld the legality of the sterilization of Carrie Buck has still not been overturned,” he said. “Prominent lawyers and physicians participated in the eugenics movement.”
Just this month, several women came forward alleging to have been sterilized without consent while in U.S. Immigration and Customs Enforcement custody in Georgia.
Liman-Tinguiri noted that doctors in the past have told him not to have children on the grounds that sickle cell is an inherited disease. However, he said his children would not necessarily inherit the disease, especially if their mother does not carry the gene.
“Everyone in my family is a sickle cell carrier. We all carry the gene,” he said. “It has made me extremely sick as someone who inherited two copies of the sickle cell gene, but it has not impeded my siblings’ potential in any way because they only have one copy of the gene for sickle cell disease.”
Liman-Tinguiri shared his story in an attempt to raise awareness for future patients of Bolaños-Meade. He also noted that his impression of the Hospital was based on experiences with a few individual doctors, not the entirety of the medical staff.
“I do not want any other patients going to Hopkins seeking care not being aware that their trust might be violated,” he said. “When people do things that are morally reprehensible, you have to hold them accountable.”