Hayley Wester, a 21-year-old premed student at Stanford and young adult with cystic fibrosis recently flirted with fame when she appeared on a CNN news brief on gene therapy. The spotlight focused on Dr. Phyllis Gardner and Dr. John Wagner, both Stanford University researchers (see CFRI News, Spring 1996 cover story). We interviewed Hayley on her experiences as a gene therapy trial participant.
When Dr. Wagner first mentioned the trials to Hayley, she eagerly signed up as she was just finishing up another study. "I'm basically a very curious person," she told me during our interview. Each participant committed two months to the study which required a baseline CT sinus scan, weekly endoscopic photos of the sinuses, monthly delivery of the corrected gene through a catheter into one sinus (one sinus was treated while the other was the control, the following month they treated the opposite sinus) followed by respiratory isolation for 24 hours, weekly follow-ups to measure potential differences in the treated versus untreated sinuses, and monthly biopsies to ensure adequate gene transference rate. Hayley added cautiously, "It was an interesting study and I'm glad I had the opportunity to participate. I'm still not sure if the things that took place were the placebo effect, but it seemed like it took longer for my sinusitis to recur." She is eager to hear the final results of the study (see editorial note, right).
Hayley won't be participating in any more studies for awhile. She was approved for the lung transplant list last May and signed up as soon as the sinus study was over. Meanwhile, she keeps herself busy. She is continuing her undergraduate studies as a premed student at Stanford University, she performs four IPV airway clearance treatments daily (Hayley said since she started on the IPV last July, she no longer needs oxygen full time), and she needs ten hours of sleep nightly. With this kind of schedule, she is hoping the transplant call will come during summer break! You may see Hayley in another edition of the medical newsbrief since CNN plans to rebroadcast it in the near future. Stay tuned!
Editor's Note: In our Spring 1996 issue of CFRI News, we reported on the Gardner/Wagner Gene Therapy Study of the Sinuses in which Hayley Wester participated. In a statement released October 25, 1996, Dr. Wagner presented the exciting results from this trial which focused on a new site (the sinuses) and included a new vector (a modified virus which produced little to no immune responses) for transference. In the three patients given the highest level of treatment, ten percent to 100 percent of the cells sampled from the treated sinus tissues carried the new, improved gene, researchers reported. "We have been able to observe the transfer of normal CF genes at levels we hypothesize will be successful at fighting cystic fibrosis," Dr. Wagner said. Dr. Phyllis Gardner added, "A randomized, double-blind, placebo-controlled Phase II trial that will assess the efficacy of gene transfer in remediating disease is planned. This brings us one step closer to establishing gene therapy as a valid concept to fight disease." Stay tuned!
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