Advocacy for Patients with Chronic Illness, Inc. uses its day-to-day work for and with patients to inform our public policy agenda. The Chronicity Project has two main goals: to redefine the definition of "disability" to include chronic illness; and to ensure that public policy debates about health care and health care finance reform include the voices of patients with chronic diseases.
When the disability rights community did the incredible work they did to arrive at the Americans with Disabilities Act (ADA), they and Congress were thinking about people in wheelchairs and other visible disabilities. However, we know that the ADA was not designed to help patients with chronic illness who need flexible work hours, work at home, and other accommodations that affect our presence in the workplace. In fact, the courts have interpreted the ADA to provide NO protection from termination of employment due to absence from the workplace. This must change if the needs of patients with chronic illnesses are to be met.
Second, The Chronicity Project is committed to participating in the public debate over health care and health care financing reform. Since patients with chronic diseases have more interaction with the health care system than any other group of people, if there is to be meaningful health care reform, patients with chronic illnesses must have a place at the table. Right now, that is not happening. Advocacy for Patients has created The Chronicity Project as our public policy arm so that we can put out the word that patients with chronic illness have specialized needs that must be met in order for meaningful health care reform efforts to succeed.