Connecticut Takes a Bold Step to Meet the Needs of Childhood Cancer Survivors
June 29, 2006
Beginning October, 2006, both private and state insurance in Connecticut will have to cover neuropsychological testing for children diagnosed with cancer on or after January 1, 2000. A licensed physician must order the testing to “assess the extent of any cognitive or developmental delays in such child due to chemotherapy or radiation.” Neuropsychological testing in Connecticut costs between $2,000 and $3,500. The bill mandates that prior authorization from state or private plans will not be required.
Half of all childhood cancer survivors have diseases and/or treatment that result in long term learning problems that emerge after treatment is completed. This bill will allow testing to determine the patients learning abilities prior to treatment and assess potential late effects years after treatment. Few educators are aware of the educational late effects related to cancer treatment. The late effects often appear years after treatment is completed and frequently are misdiagnosed or ignored all together. Typically, once the learning challenges are recognized they can be overcome through classroom modifications. Neuropsychological testing will provide the necessary documentation for children to receive special education services and enable the school to develop a plan to maximize the child’s learning potential.
This initiative was the result of months of hard work by the Leukemia and Lymphoma Society and was spearheaded by Patient Services Managers, Phyllis Osterman and Jennifer McGarry. In July of 2005, Osterman formed an advocacy committee consisting of a neuropsychologist, two mothers of young Acute Lymphoblastic Leukemia (ALL) survivors, an advocacy volunteer, and a CancerCare social worker. They determined that coverage of neuropsychological testing was a crucial piece of survivorship that many patients did not have access to because of the cost. As a result, they made it their goal to ensure all childhood cancer survivors would have access to neuropsychological testing.
After extensive research, the committee met with Connecticut legislators. Representative Christel Truglia (D), the Assistant Majority Leader, was eager to write a bill ensuring that childhood cancer survivors’ educational needs were met. Each time the bill was in front of a committee, the group’s advocacy volunteers would provide supportive documentation to the appropriate legislators. It passed unanimously in the House and passed by consent in the Senate. The bill was signed by Governor Jodi Rell in June.
This is an excellent demonstration of the power of a small group advocating for the rights of childhood cancer survivors. Osterman explains that the key is finding a legislator who is passionate, has the experience, and is respected amongst other legislators. We applaud the efforts of the Fairfield County Chapter of The Leukemia & Lymphoma Society and the valiant efforts of Representative Truglia.
Related Web sites:
Fairfield County Leukemia & Lymphoma Society
Connecticut State Representative Truglia
<< Back
June 29, 2006
Beginning October, 2006, both private and state insurance in Connecticut will have to cover neuropsychological testing for children diagnosed with cancer on or after January 1, 2000. A licensed physician must order the testing to “assess the extent of any cognitive or developmental delays in such child due to chemotherapy or radiation.” Neuropsychological testing in Connecticut costs between $2,000 and $3,500. The bill mandates that prior authorization from state or private plans will not be required. Half of all childhood cancer survivors have diseases and/or treatment that result in long term learning problems that emerge after treatment is completed. This bill will allow testing to determine the patients learning abilities prior to treatment and assess potential late effects years after treatment. Few educators are aware of the educational late effects related to cancer treatment. The late effects often appear years after treatment is completed and frequently are misdiagnosed or ignored all together. Typically, once the learning challenges are recognized they can be overcome through classroom modifications. Neuropsychological testing will provide the necessary documentation for children to receive special education services and enable the school to develop a plan to maximize the child’s learning potential.
This initiative was the result of months of hard work by the Leukemia and Lymphoma Society and was spearheaded by Patient Services Managers, Phyllis Osterman and Jennifer McGarry. In July of 2005, Osterman formed an advocacy committee consisting of a neuropsychologist, two mothers of young Acute Lymphoblastic Leukemia (ALL) survivors, an advocacy volunteer, and a CancerCare social worker. They determined that coverage of neuropsychological testing was a crucial piece of survivorship that many patients did not have access to because of the cost. As a result, they made it their goal to ensure all childhood cancer survivors would have access to neuropsychological testing.
After extensive research, the committee met with Connecticut legislators. Representative Christel Truglia (D), the Assistant Majority Leader, was eager to write a bill ensuring that childhood cancer survivors’ educational needs were met. Each time the bill was in front of a committee, the group’s advocacy volunteers would provide supportive documentation to the appropriate legislators. It passed unanimously in the House and passed by consent in the Senate. The bill was signed by Governor Jodi Rell in June.
This is an excellent demonstration of the power of a small group advocating for the rights of childhood cancer survivors. Osterman explains that the key is finding a legislator who is passionate, has the experience, and is respected amongst other legislators. We applaud the efforts of the Fairfield County Chapter of The Leukemia & Lymphoma Society and the valiant efforts of Representative Truglia.
Related Web sites:
Fairfield County Leukemia & Lymphoma Society
Connecticut State Representative Truglia
<< Back
