WASHINGTON D.C. — Kandi Pickard is a proud mother of four children. Her youngest son, Mason is 11 years old and lives with Down syndrome.
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“We’re very lucky to be part of this incredible community that is very supportive of each other,” said Pickard.
While he’s healthy now, she worries about his care later in life.
“Individuals with Down syndrome have an elevated lifetime risk, higher than 90% for developing Alzheimer’s disease,” she said.
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Pickard shared her story on Capitol Hill last year as a mother and the president of the National Down Syndrome Society.
She wants Congress to pass the Protecting Health Care for All Patients Act. It would ban federal health programs like Medicaid from using the quality-adjusted life years (QALYs) calculation.
Insurance plans use it to figure out whether its cost effective for them to cover a treatment. She said this can led to discrimination against people with disabilities.
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“I think about Mason, his access to and coverage of these lifesaving or life altering treatments are paramount for our community and for Mason,” said Pickard, president and CEO of the National Down Syndrome Society.
Lawmakers are considering the bill in the House Rules Committee this week. But there is some concern about the legislation.
Leaders from Families USA, a national non-partisan health advocacy organization, worry about the ripple effect of this bill.
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“This legislation is a giant loophole to allow the greed of drug companies to continue and would like other elements of our corporate healthcare sector continue to price gauge unchecked,” said Frederick Isais with Families USA during a congressional hearing last year about the bill.
During this hearing, Isasi told lawmakers that part of the Inflation Reduction Act already outlines several guardrails against discrimination.
“It explicitly and unambiguously bars measures that treat extending the life of an elderly, disabled or terminally ill individual as a lower value,” said Isasi.
We reached out to the Centers for Medicare and Medicaid Services about this proposal and an agency spokesperson said it doesn’t comment on draft legislation.
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