Res. No. 211
Title
Resolution declaring the last day in February as Rare Disease Day in New York City.
Body
By Council Member Eugene
Whereas, According to Global Genes, a rare disease patient advocacy organization based in California, a disease is considered rare in the United States (U.S.) if it affects fewer than 200,000 persons; and
Whereas, There are approximately 7,000 different types of rare diseases and disorders; and
Whereas, Ten percent of the U.S. population, or 30 million people, are living with rare diseases and it is estimated that 350 million people worldwide suffer from rare diseases; and
Whereas, Eighty percent of rare diseases are genetic and approximately 50% of the people affected by rare diseases are children; and
Whereas, Rare diseases are often prevalent in pockets of ethnic minorities due to their genetic origin; and
Whereas, For example, sickle cell anemia is rare globally but an estimated 1 in 11 African Americans is a carrier and a person of 100% Ashkenazi Jewish descent has a 50% chance of carrying one of several rare genetic diseases, according to the Genetic Disease Foundation; and
Whereas, According to an April 2013 Shire Rare Disease Impact Report, it takes an average of 7.6 years in the U.S. for a patient with a rare disease to receive a proper diagnosis; and
Whereas, A patient typically visits up to eight physicians and receives two to three misdiagnoses before the correct diagnosis is made; and
Whereas, The Shire report finds that rare disease patients in the U.S. face considerable financial hardship, including 55% of survey respondents stating that direct medical expenses were not covered by insurance, 37% had to borrow money from family and/or friends to pay for expenses, 34 percent sought help from charity or public assistance and 32% reported a negative impact on their credit score; and
Whereas, The economic strains and lengthy diagnosis process, as well as the...
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