The director of the National Institutes of Health apologized Saturday after a curator at the institute’s hospital objected to hanging one portrait in a scheduled exhibition depicting people with rare diseases, leading the organizers to cancel the show. Dr. Francis Collins called the founder and CEO of the group coordinating the exhibit, Patricia Weltin, on Saturday to apologize.
The apology came after an outcry on social media and the publication of a critical opinion piece on STAT by the mother of a child with a rare disease.
“It was a lovely conversation — what kind of a leader stands up and takes responsibility and calls and apologizes. It was wonderful,” Weltin, whose group is called Beyond the Diagnosis, told STAT.
The director confirmed the call on Twitter, writing that he called to “express my apologies & chart a path to continue our valued partnership, including displaying their portraits for Rare Disease Day and a future showing at the Clinical Center.”
I spoke w/Ms. Weltin from @BeyondtheDx to express my apologies & chart a path to continue our valued partnership, including displaying their portraits for Rare Disease Day and a future showing at the Clinical Center. #NIH remains deeply committed to the rare disease community.
— Francis S. Collins (@NIHDirector) December 9, 2018
The show had been slated for a two-month stay beginning in January at the NIH Clinical Center in Bethesda, Md., but the hospital’s art curator said she feared one of the portraits might evoke negative emotions in patients. Weltin has already begun talking to two alternate venues interested in hosting the show during that time period.
But Beyond the Diagnosis has agreed to bring part of the exhibit to NIH — albeit only for a day. “We agreed to bring about five or six portraits to their Rare Disease Day event,” Weltin said.
“I’ve seen the portrait the NIH wanted removed, and all I saw was a happy, vibrant young man,” wrote Annette Maughan, the chief executive officer of the KBG Foundation, in a STAT First Opinion piece published Thursday. (Maughan is Weltin’s friend; both are parents of children with rare diseases.)
That particular portrait had already been shown at the Food and Drug Administration and the Broad Institute in Cambridge, Mass., Weltin said. “And no one has ever said anything.”
“We want to be there every year,” she said. “They need to see us. This is the biggest research institute in the country — we need to be in front of them.”
The mother of two children with Ehlers-Danlos syndrome, Weltin’s work on the Beyond the Diagnosis art exhibit began in 2015 — and one of her first few stops was the NIH. But until this year, the center’s art curator had been able to pick which portraits would be shown, Weltin said — which wasn’t possible this year because of high demand.
Weltin’s options were to pull the entire show or remove one portrait. “I had a really visceral reaction,” she said. “I spent the weekend — in my mind there was no other decision at all. It’s either all of us or none of us.”