WILTON, Conn. – To watch 7-year-old Carlos Salguero practice cartwheels and sprint across his back yard, the effects of his successful battle with childhood leukemia are impossible to detect.
Yet when Carlos is in his second-grade classroom, his concentration problems and other cognitive difficulties are a reminder of the intensive chemotherapy that saved his life – at the cost of impairing his brain development.
Expensive tests have long been available to gauge the effects of cancer treatment on young patients, especially as survival rates have jumped and long-term effects on the brain can be measured.
But until now, insurance companies could refuse to pay for the tests.
That changes on Oct. 1, when a new Connecticut law requires insurers who do business in the state to cover the cognitive tests for children with cancer. State lawmakers and the Leukemia & Lymphoma Society’s state chapter say it is believed to be the first law of its kind in the nation.
The state’s subsidized HUSKY plans for uninsured children in low-income families already have been changed to include the tests.
They are administered as soon as cancer is diagnosed, during the chemotherapy or radiation, and again later, at significant developmental milestones throughout childhood.
“Most of the impairments and side effects can take years to become evident, but physicians before now have often been reluctant to urge parents to go for the tests because it was so difficult to get (insurance) coverage,” said Phyllis Osterman, patient services manager for the Leukemia & Lymphoma Society’s Connecticut chapter.
“What’s really starting to be addressed now is that with survivorship come a lot of other problems. Earlier intervention will really benefit these kids as they grow up,” she said.
For Carlos Salguero, the tests help pinpoint how chemotherapy affected his learning abilities, and help his parents and teachers determine how to compensate.
When he was diagnosed with leukemia at 2 years old, his parents were warned that the upcoming 2 years of treatment would do more than sap his physical strength.
“The doctor said, ‘I have to tell you, one of these drugs is known to have long-term cognitive effects.’ Coming right as we learned that he had cancer, that was like another punch in the stomach,” recalled his mother, Liz Salguero of Wilton.
Since the cognitive tests were not covered by insurance, the Salguero family spent more than $5,000 for a battery of exams.
With information from those tests and follow-up reviews, Carlos’ parents and teachers have compensated for his difficulties with steps such as giving him a front-row seat in class, and ensuring he has a quiet area without distractions when he reads and writes.
“The good news after the treatment is that he’s going to have a long and happy life,” Liz Salguero said. “The not-so-good news is that he will have some struggles in school, but knowing that, we can get the resources and support to help him.”
The cognitive problems occur because the same knockout effect that chemotherapy and radiation have on growing cancer cells can cause collateral damage to growing brain cells.
For children, who experience the majority of their brains’ growth up to age 5, that can affect memory, focus, attention, fine motor skills, ability to judge spatial relationships and other skills.
Dr. Nathan Hagstrom, director of hematology and oncology at Connecticut Children’s Medical Center in Hartford, hailed the new law as a message that the state values the potential of children who are fighting or recovering from cancer.
“We want to preserve their potential so they can go on to live happy lives and do great things,” Hagstrom said. “None of that is possible without knowing what their neurocognitive impairments are, and you can’t do that without doing the detailed testing.”
Unlike some proposed laws seen as adding costs to private industry, the bill requiring insurance coverage of the cognitive tests did not face strong lobbyist or corporate opposition last spring, said state Rep. Christel Truglia, D-Stamford, its principal sponsor.
On the contrary, she said, it moved quickly and without controversy through several legislative committees. The state Senate and House of Representatives both approved it unanimously, and Gov. M. Jodi Rell signed it as soon as it reached her desk.
“Cancer can take away two of three years from a child’s development, and that’s why this testing is so incredibly important,” Truglia said. “I think everyone saw that it’s really a prevention measure in the long run. We didn’t want any child to lose any precious time that they have to learn.”
AP-ES-09-23-06 1153EDT
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