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Lack of cures combined with minimal viable treatments compounds increasing health and caregiving costs
May 27, 2021 (WASHINGTON, D.C.) The Partnership to Fight Chronic Disease (PFCD) today released a literary review and infographic data on Alzheimer’s disease and related dementias (ADRD), Parkinson’s disease and motor neuron diseases, specifically amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA). The data review examines specific disease burden, economic burden, individual costs, and caregiver burden for these neurodegenerative diseases. The annual cost for these conditions in the U.S. was $655 billion in 2020, including direct medical and non-medical costs and indirect costs from lost productivity and uncompensated caregiving hours.
Neurodegenerative disease arises when nerve cells in the brain or other parts of the nervous system lose function and eventually die. While there are some viable treatments currently available that may relieve some of the associated symptoms, only SMA has disease-modifying treatments available. Collectively, these diseases affected 4.7 to 6.0 million individuals in the U.S. between 2016-2017, were responsible for more than 272,000 deaths and more than 3 million disability adjusted life years in 2016.
“The enormous burden of these illnesses is felt not just by the patient but also their families and caregivers,” emphasized Ken Thorpe, PFCD Chairman. “The vulnerability of people living with these conditions, the increasing demands of their illness and the prevalence projections we are seeing all point to a dire need for reforms to support those diagnosed and their caregivers and to encourage and prioritize research and innovation that leads to new treatments and cures.”
The data review notably highlights:

  • Ethnic, demographic and education metrics,
  • Direct and indirect medical costs,
  • Specific health care cost components,
  • Progressive productivity losses, and
  • Unpaid caregiving costs.

“The very nature of neurodegenerative disease commands a greater understanding of the growing numbers, the increasing needs and related costs for people living with these types of health conditions as research continues for urgently needed treatments,” said Dr. Allan Levey of the Department of Neurology and Goizueta Alzheimer’s Disease.
For the full literature review and infographic overview on related issues, please visit:  
The Partnership to Fight Chronic Disease (PFCD) is an international coalition of patient, provider, community, business and labor groups, and health policy experts, committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease.