TodayOne family’s struggle helps many to hope
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Article RatingToo many people today believe it’s impossible for one person to make a difference. In fighting for her son, however, a Carlisle woman refused to give in and took her cause to Washington last summer.
Now, Sen. Arlen Specter, R-Pa., is preparing to introduce a bill titled the “Nino Act of 2008” to ensure that thousands of children who receive treatment from the National Institutes of Health, a leading provider of experimental medicine, continue to receive it if they must leave the federally funded program.
The woman is Lori Todaro, and Nino is her 9-year-old son, who nearly all his life has suffered from periodic fever syndrome, a genetic disorder that can lead to uncontrolled inflammation throughout the body.
Nino benefited from experimental treatment provided through the NIH. But federal budget cuts force the NIH to drop several projects, including clinical trials in several areas of cancer research and into rare disorders such as Nino’s.
Because Nino’s treatment was classified as experimental, even though it was proven effective, the Todaros’ insurance wouldn’t cover it and they were left to come up somehow with the $10,000 to $12,000 for the drugs that gave Nino a normal life. This added unimaginable stress to the task of keeping their son healthy and active.
“It just never lets up,” Todaro told The Sentinel last week. “You’re just constantly finding what’s covered or not.”
Last spring, Todaro and three other Pennsylvania mothers whose children suffer from forms of PFS met with Specter, who sits on the Senate Appropriations Committee, which oversees NIH funding. They also lobbied Sen. Bob Casey.
Specter’s office intervened and NIH granted Nino another year of coverage. But the threat remained that other children dependent on the NIH could find themselves in the same plight if it no longer could support their treatment.
And that is no idle worry. While NIH research has made significant discoveries in the treatment and prevention of heart disease, diabetes, hypertension and infectious diseases, ranging from measles and pneumonia to HIV/AIDS, its budget has declined, forcing it to make hard choices about what lines of research to continue and which to abandon. The NIH pays for the majority of the country’s biomedical research. Its work ultimately affects every American but is the last, best hope for hundreds with rare conditions.
If Specter’s bill becomes law, Medicaid will cover the treatments provided by the NIH, meaning thousands of children and their parents will be spared the anxiety Nino and the kids in the PFS program endured.
For this, Lori Todaro and those who fought with her for the “Nino Act” should be proud of how their refusal to accept things as they will potentially make a dramatic difference for not only their families but for people they may never know.
