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Desert Companion

Community: ‘What Would You Do?’

pediactric-3.jpg

Pediatric AIDS
Photo Illustration by Brent Holmes

The angry loved one of a child with HIV fights UNLV’s changes to a life-saving pediatric program

Elena Ledoux has known her close friend since they were kids growing up together abroad, so it’s not unusual that the friend’s daughter sees Ledoux as a second mom — especially the last couple years, since Ledoux has been helping the girl get critical medical care for her HIV. (The child, deemed by her treatment team too young to process the information, doesn’t know she has the virus. She and her parents are anonymous here to protect their privacy.) That role recently thrust a reluctant Ledoux into the spotlight, as she has agitated for straight answers from UNLV about why two doctors who were caring for the daughter, and some 60 other children, were let go in September.

“This is not something that I wanted to do,” she says. “I’m a small business owner. I don’t need the negative publicity. But these are sick children. … What would you do?”

Ledoux and the mother’s paths parted ways when Ledoux came to the U.S., where she eventually went to law school. Ledoux married, had two kids of her own — both boys — and lived in Hawaii and Europe before moving to Las Vegas about five years ago.

Meanwhile, the daughter contracted HIV while receiving a blood transfusion at a hospital in her home country when she was 2 years old. She had various health issues for years, but wasn’t diagnosed as HIV-positive until age 8, when painful sores broke out all over her body. Around the same time, her parents were arranging to immigrate to the U.S. The mother contacted her friend Ledoux, whom she’d kept in touch with through the years, knowing she could help the family settle in.

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Their first priority was getting the daughter to a doctor. Ledoux contacted Aid for AIDS of Nevada, or AFAN, which referred her to a local pediatric HIV clinic funded by a federal grant. The daughter qualified for free care there, due to her immigration status. Overseeing the clinic’s medical program — the clinic also includes counseling, food stamps, and other services for people with limited access to such things — was pediatrician Echezona Ezeanolue (“Dr. Eze” to his patients) and nurse practitioner Dina Patel.

“Dr. Eze and Dina saved (my daughter’s) life,” the mother tells me, with Ledoux translating from their native language. “When we went to see them, she was blue, not growing, skinny, had tuberculosis, and couldn’t use one of her arms. The virus was taking her over. I had resigned to bury my daughter.”

Under Ezeanolue and Patel’s care, the daughter blossomed. They matched her with the right prescriptions and, most importantly, “they protected her and calmed her,” her mother says.

For about two years, the daughter’s care ran on auto-pilot: easy routine visits; automatic prescription refills. Then, in mid-October, it came to a screeching halt. A dentist required a doctor’s clearance before doing some necessary work on the daughter’s teeth. When the father went to see Ezeanolue and Patel, their office in the UNLV Pediatric Clinic was closed. (It turns out their services had been suspended since September 15.) More important than the dentist visit, the daughter was running low on the anti-viral medication that she takes daily to stay contagion-free.

The dire need for this medication is what launched Ledoux into action. She made dozens of phone calls, she says, including to UNLV’s School of Community Health Sciences Dean and School of Medicine Acting Dean Shawn Gerstenberger, and UNLV President Len Jessup, whose offices she also visited personally — and where she threatened to camp out until she got some answers. Down to the last pill in his daughter’s prescription, the father persuaded their regular pediatrician to give them an emergency one-month refill. By that time, Ledoux had connected with other parents whose children had been getting care from Ezeanolue and Patel. They staged a protest of sorts, using the public comment period of the Board of Regents’ October meeting to air their grievances.

Over the next few weeks, each side dug in its heels. On October 20, UNLV issued a statement saying that an administrative audit was underway and referring patients to a case manager for help finding alternative services. Ledoux, who tried this approach, said the case manager wasn’t helpful, since the services available didn’t include a pediatric HIV specialist, but, rather, a doctor in a clinic filled with adults, free condoms, and literature on HIV/AIDS — not an appropriate environment for kids. The mother of one patient, who’d been hospitalized due to complications from her HIV, hired an attorney, Jacob Hafter, to sue for reinstatement of the program. In their reply to the lawsuit, attorneys for Gerstenberger and the university said that Ezeanolue and Patel refused to complete necessary paperwork, and that they withheld patient information. Hafter claimed that Gerstenberger made discriminatory remarks to Ezeanolue, who filed complaints with both the university’s compliance office and the state’s Equal Employment Opportunity Commission. As backlash, Hafter says, the dean had the physicians terminated and escorted off campus, barring their access to documents and e-mails that could corroborate their side of the story.

On November 8, during a state district court hearing, an attorney for UNLV told Judge Nancy Alff, in essence, that the legal action had been rendered moot by the university getting (that very morning) approval for David Di John, a pediatrician who specializes in infectious diseases, to take over the HIV program. Alff said the court would take them at their word that patient care would be restored. Nevertheless, she set an early-December date to hear the two sides argue the case further.

Perhaps Alff had some of the same questions Ledoux still has; namely, why did the university wait until October 20 to publicly address a problem that began September 15? Why were Ezeanolue and Patel relieved of the program that Ezeanolue had started 10 years earlier? The federal grant had been awarded in August; what related documentation was so important (and so complicated) that it couldn’t be worked out internally and necessitated a service suspension? What is the status of Ezeanolue’s discrimination complaint against Gerstenberger?

The health and medical schools, and the compliance office, along with the NSHE Board of Regents, referred inquiries to the UNLV public information office, which said it doesn’t comment on personnel matters, though it did say in a press release that “the lawsuit has no merit and is based on inaccuracies and misinformation.” The EEOC said it’s forbidden by law to share complaint information with the media. Just before press time, the Review-Journal reported that 10 women had complained about Gerstenberger’s conduct to a state faculty association.

On the other hand, Ezeanolue and Patel’s respective medical boards show that their licenses are active, and they have no malpractice claims or disciplinary actions pending against them. 

The most important question remains: What will happen to the children who were being treated through the program? Gerstenberger told Desert Companion, “We apologize for any inconvenience this may have caused patients. Getting patients the care they need and deserve is our number one priority, and we are putting tremendous time and effort into that.”

Ledoux, who has met Di John, fears for the daughter’s well-being in the care of someone who doesn’t specialize in HIV. “He was nice,” she says. “But UNLV told us this is not his area of expertise. How would you feel if it were your child?” 

Correction: In the December 2017 print edition, attorney Jacob Hafter was misidentified as Jacob Shafter.

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