The Littlest Lobbyist
Five-year-old Lili Whitaker goes on a mission for health care
The late Senator Everett Dirksen had a much-pirated favorite saying on the power of grassroots advocacy, “When I feel the heat, I see the light.” This past June, 5-year-old Lili Whitaker and her mother, Julie Newland, were in Washington, D.C., advocating on behalf of the University of Michigan C. S. Mott Children’s Hospital as part of the National Association of Children’s Hospitals Family Advocacy Day.
The trip was organized by the Children’s Advocacy Initiative at Mott, which is committed to providing a persuasive and influential voice for children and advancing the health status of children through active advocacy. Lili and Julie, along with representatives from more than 35 other children’s hospitals, were there to make sure that members of Congress felt the heat. At stake was the fate of crucial legislation that would protect the range of services currently covered by Medicaid.
Medicaid is the single largest health insurer for children and the single largest payer of care delivered by children’s hospitals. Consequently, it is essential to children’s health and children’s hospitals. Medicaid is also what enabled Lili to get a kidney transplant from her mother. Lili was diagnosed with Potter’s syndrome before she was born and with end-stage renal disease at just five days old. Lili’s story is a powerful argument for protecting the public health coverage that makes success stories like hers possible.
The mother-daughter team was a force to reckon with and their visits made the front page of Roll Call, Washington, D.C.’s premier political newspaper. Walking into the congressional offices, with one hand holding on to her mother and the other swinging her prized purple purse, Lili claimed the head of the table for most of the meetings. And while Julie, a member of Mott’s Patient and Family Advisory Council, described to her congressional delegation the care they received at Mott and the need to protect Medicaid, Lili won Hill staffers over with the sheer power of dimpled charm. As for the legislation, it passed in the U.S. House on the same day Lili and Julie made their Hill visits, and was signed into law at the end of June.
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