WASHINGTON – When Susan Belfiore tells her story to a Senate committee, she will put a human face on an issue best illustrated by the people it affects: children getting medication not approved for them.
Whether Sept. 11 heroes or Alzheimer's caregivers or consumers saddled with credit card debt, such people have tales of loss, suffering or financial hardship to tell. When personal woes fit political ends, Congress is happy to listen.
Belfiore, a mother of five from Princeton, N.J., is expected to tell lawmakers Tuesday about her daughter, Mihaela. One of four HIV-positive children 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 about caring for her husband, Steve, diagnosed two years ago at age 60 with early onset Alzheimer's disease. She urged lawmakers to double federal spending on Alzheimer's research.
Wes Wannemacher, of Lima, Ohio, described 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 or 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.
Belfiore's 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, 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 and 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," Belfiore said in a telephone interview.
Blum said the local chapter of the Alzheimer's Association referred her to the Senate's health subcommittee on retirement and aging, which held a hearing last week on the disease.
Blum, who also cares for her 92-year-old father, said she turned to the association for support after her husband's diagnosis.
The group's coordinator submitted her name to Sen. Barbara Mikulski "as someone they might like to hear from and they notified me that I was selected," Blum said before the hearing, which was led by the Maryland senator.
The association also helped draft her statement and arranged transportation to Capitol Hill.
"A member of the committee will be interested in having a particular point of view represented on a hearing panel. Sometimes they know people directly they can call," said Diane Thompson, a vice president at the Elizabeth Glaser Pediatric AIDS Foundation. "Other times they'll go through organizations such as ours," Thompson said.
Sometimes, the committees themselves get lucky.
Wannemacher said that while negotiating repayment with Chase and his credit counselors, he read that Sen. Carl Levin, D-Mich., chairman of the Senate Homeland Security and Governmental Affairs' investigative subcommittee, was interested in looking into credit card industry billing practices.
Levin's staff had sent an e-mail about coming hearings to constituents back home. It apparently ended up on a Web site, where Wannemacher read about it. He contacted Levin's office and was asked to testify — after his story checked out.
Before he could share his story, however, a Chase representative called to say the company had reviewed the account and would forgive the outstanding $4,400 balance. He already had paid $6,300, nearly twice the original debt.
The impact of Wannemacher's testimony — or just the knowledge that he was headed to Congress — was immediate.
Blum will have a longer wait, and the outcome she desires is not assured.
The House and Senate must agree on next year's federal budget, and doubling money for Alzheimer's research to $1.3 billion from $640 million, as Mikulski and Sen. Kit Bond, R-Mo., have proposed in their bill, is subject to negotiation.