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CAL Undiagnosed Diseases Act of 2013

CAL Undiagnosed Diseases Act of 2013.

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CAL Undiagnosed Diseases Act of 2013

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  1. CAL Undiagnosed Diseases Act of 2013 • In 2006, a young boy by the name of Cal passed away when he was five years due to an undiagnosed disease. During his short life, Cal developed many unexplained medical problems such as neurological difficulties, cerebral atrophy, migraines, and seizures. Doctors handling Cal’s case could only tell his parents what diseases he did not have, and tragically Cal’s parents never received a confirmed diagnosis. • If there had been a medical database, where symptoms of rare diseases could be shared; doctors could have collaborated on Cal’s case and confirmed a diagnosis. • Currently, there is no database like this that is available, and the only way to compare cases is by word of mouth.

  2. Facts about Undiagnosed Diseases: • According to the Department of Health and Human, undiagnosed diseases are considered to be disorders with long-standing symptoms or signs that have not been diagnosed; despite extensive clinical investigation. • Undiagnosed diseases include rare diseases that less than 200,000 individuals in the US have, yet-to-be-described disorders, or rare variants of more common diseases. • According to the European Organization for Rare Disease, 25% of diagnoses are delayed between 5-30 years. This delay in an accurate diagnosis can be costly by involving numerous tests, medications, therapies, travel, and special diets. These expenses can leave the patients and loved ones emotionally and physically drained.

  3. CAL Undiagnosed Diseases Act of 2013 • Ever since Cal’s untimely passing, Heather, Cal’s mother, has made it her mission in life to help create a rare disease database. This database would allow doctors to share patient symptoms and effectively collaborate with one another. • Congressman John “Judge” Carter was inspired by Cal’s story and Sponsored H.R. 1591 the CAL Undiagnosed Diseases Act of 2013. H.R. 5191 outlines the CAL Network, in order for it to be successful. The CAL Network would provide physicians with a way to search for similar cases of undiagnosed diseases.

  4. The CAL Network: • This network would help determine factors that contribute to undiagnosed diseases (i.e. age, race, gender, family history). This network would also help identify reason for misdiagnoses, and allow the Secretary of Health determine if additional undiagnosed disease programs are needed. • The CAL Network would additionally be beneficial for veterans returning home. Currently, there is a long list of veterans with undiagnosed diseases. Since, more and more veterans are returning home, this already long list could increase in number and ultimately be detrimental to our brave men and women.

  5. Implementation of CAL Network: • The CAL Network implementation would require two critical phases. The first phase would be a study period. • The study period would last up to one year after the date of enactment in order for any necessary study and research necessary to implement the CAL Network. • The implementation phase would require the CAL Network to be up and running on September 30, 2015. The CAL Network Bill would authorize 5 million from the FY2014 to FY2019 appropriations to fund the CAL Network.

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