David Vetter's mother discusses son's impact on science, health care

Thirty-three years after his passing, David Vetter, 'the boy in the bubble' is still discussed in the world of science and most recently, health care legislation.

"Every parent who has lost a child wonders if their brief life has meant something to the world. Others have said to me 'yes, David has made a difference,'" said David's mother, Carol Ann Demaret.

Vetter was born Sept. 21, 1971 with Severe Combined Immunodeficiency, a genetic disease which dramatically weakens the immune system. He lived his entire life in an isolator, or bubble, in Shenandoah until he died at the age of 12 in 1984.

Demaret has since served as an advocate for the Primary Immunodeficiency Community and serves as a board member with the Immune Deficiency Foundation.

Improving Medicare

In 2012, Rep. Kevin Brady, R-TX introduced legislation creating the Medicare IVIG access act, which allows patients with weakened immune systems to receive in-home care. As written however, the bill only provided Medicare coverage for the immunoglobulin product and not the items or nurse services needed to conduct the infusion.

The bill was signed into law by President Barack Obama in 2013.

To correct the voids created in the original bill, this legislative session Brady introduced HB 3178, "The Medicare Part B Improvement Act."

According to Brady, the bill expands access to high quality care, improves efficiency in care delivery and eases administrative burden on providers, allowing them to spend less time on paperwork and more time with patients.

Additionally, the bill extends and improves Medicare home infusion services and extends the IVIG demonstration program-both aspects that hit close to home for Demaret.

"As I learned from Carol Ann Demaret... life with a severely weakened immune system can be an incredible struggle-and for children especially-it can be a daily fight just to survive," Brady said in a statement to the House of Representatives. "Allowing these vulnerable patients to receive treatment from the safety of their own home can not only improve their quality of care-it can greatly enhance their quality of life."

The House of Representatives unanimously passed HB 3178 on July 25 and the bill will now go to the Senate floor.

"Our community is so grateful to Chairman Brady for taking the lead once again to introduce HB 3178," Demaret said. "We hope and pray that the vote will be the same (in the Senate) so that our vulnerable patients will have the important site of care that is so necessary for their life saving therapies."

Worldwide effects

In addition to HB 3178, Vetter's life has also changed the course of science in other ways. Because Vetter provided doctors with the information they needed to detect SCID, Texas, along with 45 other states, now conduct SCID screenings on all newborns.

Vetter's death in 1984 also confirmed what science had long-suspected, linking viruses to cancer, Demaret said.

"Within several months of David's passing, what science had always suspected was that cancer could be caused by a virus; David's passing confirmed that," she said. "David put science on a path that made them understand the immune system and how it functions and the necessity of it."

Today, Demaret volunteers at Texas Children's Hospital in The Woodlands, where the David Clinic, an extension of the David Center at Texas Children's Hospital Houston, is located.

She said she hopes to continue making strides for members of the Primary Immunodeficiency Community to honor the legacy of her son.

"I am very proud to volunteer at Texas Children's Hospital The Woodlands," Demaret said. "The site of the hospital is not very far from where my David slumbers. When I walk into this hospital, I feel a warm reminder of the past and I have great expectations for the future-that's what this hospital does for me. I owe a great debt because I feel that Texas Children's (Hospital) gave us 12 years with David that we would not have ordinarily had."

Information from our partners at Community Impact Newspaper

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