My name is Mindy Cameron and I am the Advocacy Director of Little Hercules Foundation and the mother of an 18-year-old who lives with Duchenne muscular dystrophy. Many genetic diseases, including Duchenne, leave patients very vulnerable to life threatening and deadly outcomes from respiratory viruses like CoVid19. During a pandemic situation with community spread, it is necessary for such patients to self-isolate earlier and longer than typical people, including ending contact with non-family personal care attendants. In these circumstances, it is necessary for a family member to live in isolation with the patient in order to provide personal care needs like toileting, showering, eating, dressing, administering medications, attending to ventilation support systems, and more. Family caregivers in these situations should be given a period of paid leave from their jobs and this should be specifically included in the Families First Coronavirus Response Act.
Idea No. 2048