Press release from the American Kidney Fund
MELROSE, Fla. – Melrose resident Sue Reale traveled to Washington, D.C., on September 11 as an Ambassador for the American Kidney Fund. Reale, who has autosomal dominant tubulointerstitial kidney disease (ADTKD), a genetic kidney disease, spoke to the staff of five legislators, including Congresswoman Kat Cammack, Senator Rick Scott, and Senator Ashley Moody.
Reale said, “I am passionate about spreading the word about rare kidney diseases, including ADTKD. We spoke to the fact that some ‘rare’ diseases might not be so rare once more people become aware of them or are diagnosed with the disease. Thus, it is more likely a drug will be developed and research conducted about the rare disease.”
Reale is also an avid volunteer Events Director at the Rare Kidney Disease Foundation, a nonprofit that supports and searches for patients with ADTKD, so they can eventually participate in human trials for a treatment that is in the works.
Members of AKF’s Rare Kidney Disease Action Network (RKDAN), advocates with the Foundation, and healthcare professionals met with lawmakers and urged them to support key legislation that, if passed, would significantly improve healthcare services for people with rare kidney disease, increase awareness of rare kidney disease, ensure living donors can take time off work to donate an organ, and protect living donors from insurance discrimination.
“There are approximately 150 different rare kidney diseases and not nearly enough resources dedicated to improving understanding and knowledge of these conditions. People with rare kidney disease often struggle to receive an accurate diagnosis or access quality healthcare, so our efforts focused on garnering support for the New Era of Preventing End-Stage Kidney Disease Act, which would address these issues and more,” said LaVarne A. Burton, AKF President and CEO. “We are also continuing to push for passage of the Living Donor Protection Act. Living organ donors are often discriminated against by insurance companies or not able to take the necessary time off from work after they donate an organ, which may discourage future living kidney donors from giving the gift of life.
“By passing these bills, Congress will help ensure that healthcare professionals will have the knowledge and information they need to provide personalized, quality treatment to people living with rare kidney disease and living kidney donors will have the support they deserve, which will ultimately save lives. We are proud to work alongside members of AKF’s Rare Kidney Disease Action Network and the IgA Nephropathy Foundation to champion these critically important bills.”
“Our Hill Day, in partnership with the American Kidney Fund, is a powerful reminder that the patient voice is the most compelling force for change,” said Bonnie Schneider, director and co-founder of the IgAN Foundation. “By advocating for the Living Donor Protection Act and the New Era Kidney Disease Act, we are directly addressing the legislative barriers that stand between our community and a longer, healthier life.”
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