New York City-based Human Rights Watch ( HRW ) and InterACT—a Sudbury, Massachusetts-based advocacy that works on behalf of intersex youth—on July 25 launched a report at Center on Halsted documenting the extent of medically unnecessary surgeries being performed on intersex children.
The report was launched in Chicago because associations like the American Medical Association ( AMA ) and the American Academy of Pediatrics ( AAP ) are headquartered here, panelists said; AAP has issued a statement in support of the 160-page report's findings.
Kyle Knight, an HRW researcher, said that the report was the culmination of "25 years of painstaking work" as researchers and advocates documented cases where medical professionals were overeager to perform surgery that might not have been necessary for the wellbeing of their intersex patients. Possible side-effects resulting from such surgery, according to an introductory video played before the forum, include scarring, nerve-damage, incontinence and infertility.
The panelists agreed that surgical remedies are best left until a patient has reached an age when they can play a meaningful part in their medical decision-making.
"It's time for these surgeries to stop," said Kimberly Zeiselman, InterACT's executive director. "… I can tell you that these youths are just fine the way they are."
Eric Lohman, an InterACT board member, spoke about his experiences when his daughter, Rosie, was born with Congenital Adrenal Hyperplasia, an intersex condition. When he and his partner expressed misgivings about a surgical remedy Rosie's physician offered, their reluctance was dismissed as concerns about the doctor's competence, not the underlying ethics behind the procedure. But the couple still elected not to proceed with the surgery.
"We have continued to allow her to be what she wants to be," Lohman said of Rosie, who is now five-years-old.
Philadelphia urologist Ilene Wong Gregorio, MD, called the surgeries "one of the most profound failures of modern medicine." She dismissed misgivings expressed by medical institutions about the lack of data regarding other, non-surgical interventions for intersex children. She noted that, within her own discipline, mounds of data were required to facilitate shifts in treatment even for prostate cancer, the most common cancer among American men.
Intersex individuals make up a much smaller number in the population, Gregorio said, so such extensive data will likely be hard to come by; medical professionals, she noted, must stop downplaying "the power of anecdote."
Gregorio added, "It's been 20 years, and they haven't been able to generate even a fraction of the data required."
One audience member noted the irony many that transgender adults have difficulty securing transition-related treatment, while intersex children who cannot give their own consent are subject to life-altering, irreversible procedures.
"Doctors who perform these things are really afraid of sexual difference," said Bo Laurent, founder of the Intersex Society of North America. "So they insist on inflicting these practices on infants to try to make them normal. When they're confronted with a transsexual person, they think that the transsexual person will be less normal with these interventions, so they resist."
"We just want the medical community to refocus its efforts," said Knight. "Stop putting so much attention and [so many] resources to these early surgeries where the kid can't consent and refocus on adolescents and adults who want some interventions, care and expertise that the medical community has built up over the years."
Lynnell Stephani Long, InterACT's vice-president, also spoke at the forum, which was introduced by Jackie Kaplan-Perkins, HRW's Chicago and midwest director.
The HRW-InterACT report is at www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us .
Related coverage at the link: www.windycitymediagroup.com/lgbt/US-Surgery-on-intersex-children-unnecessary-risks-lifelong-suffering/59884.html .
