Sorrow and joy: Bubble Boy's legacy inspires Medicare reform

THE WOODLANDS, Texas -- David Vetter was born 44 years ago, but his life and legacy will live on for generations.

Lovingly referred to as ‘Bubble Boy,’ David’s story gained international attention after he was diagnosed with severe combined immunodeficiency, or SCID, by doctors at Texas Children’s Hospital.

David grew up inside enclosed, sterile habitats that protected him from any outside infections or pathogens, spending his entire life inside the “bubble” in his family’s home in Shenandoah, Texas or inside a smaller bubble at Texas Children’s.

At 12-years-old, David underwent an experimental bone marrow transplant from his sister, which infected David with Epstein-Barr virus -- resulting in lymphoma, which ultimately took his life.

Carol Ann Demaret, David’s mother, said she is proud of her son's fight and the lasting effects of his death on SCID research and legislation.

“Sorrow and joy,” Demaret said. “It’s the sorrow that never leaves because David is no longer with us but it’s the joy that I feel when something positive like this happens as a result of David’s good name and what his fight has done for science and the improvements that have been made since he passed away for the immune deficient patient.”

On July 25, 2017, the House unanimously passed bipartisan legislation that was introduced by Congressman Kevin Brady (R-TX 8th District) to improve Medicare Part B programs for patients like David who face significant health challenges.

“Importantly, H.R. 3178 extends and improves Medicare home infusion services, which allows patients to receive personalized care in the comfort of their own home,” said Congressman Brady, Chairman of the House Ways and Means Committee. “Allowing these vulnerable patients to receive treatment from the safety of their own home can not only improve the quality of the care – it can greatly enhance their quality of life. It can give a kid a real chance to be a kid.”

The bill will now travel to the Senate and will hopefully be unanimously passed like it was in the House, Demaret said.

“Congressman Kevin Brady has been a champion for the immune deficient patients for many years since I first met him,” Demaret said. “He understands the unique needs of the Medicare beneficiary.”

David’s family celebrates the contributions his life made to science and continue to be advocates for patients suffering from immune deficiencies.

Although David is not here to see the impact of his fight, his mother knows he would be overjoyed with the progress his legacy has inspired.

“David would always watch the news and was always taken aback by children who were suffering,” Demaret said. “I always thought that was very kind because he was just a child himself. I think, now, that David would be very proud of the contributions that his gallant life and death have made. He would be very proud of how science has advanced.”

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