Adrenal Alternatives Foundation is an active representative in the Rare Disease Legislative Caucus, where we are a voice for all adrenal disease patients. We are currently proposing the expansion of the No Patient Left Alone Act, originally passed in North Carolina.
Legislative Proposal: Expanding the SB 730 – No Patient Left Alone Act
BILL ANALYSIS: S730 contains the “No Patient Left Alone Act” which ensures the visitation rights of hospital patients during a period in which a disaster, emergency, or public health emergency has been declared.
GOAL: Proposing expansion on the No Patient Left Alone Act, originally passed in North Carolina. We are proposing a standard protocol outlined in a legislative bill that will mandate nationwide protocols that allow chronically ill patients to have a caregiver with them during medical procedures/treatments.
SOLUTION: Standard legislation that mandates medical centers must follow existing guidelines in Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section1557 of the Patient Protection and Affordable Care Act (ACA). There needs to be legislation that allows chronically ill patients to have a caregiver with them during medical procedures, treatments and surgeries even during a pandemic.
Many current COVID restrictions are crossing moral grounds in many cases, which there are thousands of patient testimonials to support. In patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, they are now forced to be alone during these already difficult treatment sessions, therefore increasing the suffering and adding potential mental health implications, which then can adversely impact their overall health and wellbeing. The increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present, should be of great concern not only to patients and caregivers, but to medical professionals as well. Facilities, hospitals and treatment centers are citing covid as the rationalization behind restricting visitor access and not complying with the requirements of the Americans with Disabilities Act (ADA) which clearly states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. These accommodations can include visitors who provide the patient with necessary support services, including communication support, behavior support, and support managing anxiety and other unique needs. There are several federal disability civil rights laws that can apply to hospitals – Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of these statutes protect people with disabilities, and yet facilities, medical centers and hospitals across the nation are denying chronically ill patients a basic human rights of support and comfort of a loved one during medical experiences, citing Covid19 restrictions as the reasoning. The ADA, RA, and ACA are not suspended during the COVID-19 pandemic. The United States Department of Health and Human Services’ Office for Civil Rights issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.
PLEASE SIGN THE PETITION TO SUPPORT THE EXPANSION OF SB730
sponsored by the Adrenal Alternatives Foundation a 501(c)3 nonprofit patient advocacy organization.
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