- The Washington Times - Sunday, March 25, 2007


Susan Belfiore will tell her story to a Senate committee tomorrow, putting a human face on an issue best illustrated by the people it affects: children getting medication not approved for them.

Whether September 11 heroes or Alzheimer’s caregivers or consumers saddled with credit-card debt, people have tales of loss, suffering or financial hardship to tell — and when personal woes fit political ends, Congress is happy to listen.

Mrs. Belfiore, a mother of five from Princeton, N.J., is expected to tell lawmakers tomorrow about her daughter, Mihaela. One of the four HIV-positive children whom she and her husband adopted from Romania, Mihaela initially did not get the right medication to control the disease, which causes AIDS.

Marilyn Blum of Owings Mills, Md., talked last week about caring for her husband, Steve, diagnosed two years ago at 60 with early onset Alzheimer’s disease. She urged lawmakers to double federal spending on Alzheimer’s research.

Wes Wannemacher of Lima, Ohio, described earlier this month how his credit-card company turned a $3,200 debt into a $10,700 tab after tacking on interest and fees. He was $200 over the limit when this happened.

There are many ways that House and Senate committees find people who can illustrate their issues: through their own research or investigative work, by word of mouth or from lawmakers’ constituents.

Advocacy and interest groups often put committees in touch with people who may be willing to share their stories. Some enterprising souls end up before Congress on their own.

Mrs. Belfiore’s scheduled appearance before the Senate Health, Education, Labor and Pensions Committee stems from her advocacy on the issue of safe medicines for children and her family’s work with the Elizabeth Glaser Pediatric AIDS Foundation. She supports renewal of a law requiring that certain drugs be tested in children, mostly new medicines coming onto the market.

In 1990, Mrs. Belfiore and her husband, William, adopted the four Romanian children who had been placed in an orphanage after they were found to be HIV-positive. But back home in New Jersey, one of the girls was not getting the right medication in the right amount to control the disease, mostly because many HIV drugs at that time had not been tested for use in children.

Mihaela, 17, is getting the right medicine now.

“She’s gone from a very sick child to a very healthy child,” Mrs. Belfiore said.

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