Sanford and NIH raise awareness on the cost of rare diseases
Contact:
Jon Berg
Sanford Health Media Relations
605-366-2432/Jon.Berg@sanfordhealth.org
SIOUX FALLS, S.D., Nov. 2, 2021 — A new study published recently found health care costs are three to five times greater for people living with a rare disease. Sanford Health joined the study along with the National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS), Oregon Health & Science University and a health insurer in Australia.
The retrospective study examined medical and insurance records for people with rare diseases and found medical costs for those with rare diseases are similar to those for cancer, heart failure and Alzheimer’s disease.
Data from NCATS found that rare disease patients spend, on average, anywhere from $4,400 – $19,000 on medical care in a five-year period compared to an average of $2,200 for those without a rare disease.
“The diagnostic journey for those living with a rare disease is often long, difficult and expensive,” said Dr. David Pearce, president of research, innovation and world clinic at Sanford Health. “Our international rare disease registry, CoRDS (Coordination of Rare Diseases at Sanford), monitors the advancement of research into more than 7,000 unique disorders to help clinicians make diagnoses more quickly, connect people living with rare disease to clinical trials and find better treatments.”
“There needs to be greater public awareness of the large and growing medical footprint of rare diseases in society,” said senior author of the study Anne Pariser, M.D., director of the NCATS Office of Rare Diseases Research. “Only about 10% of rare diseases have an FDA-approved therapy for their treatment. The findings underscore an urgent need for more research, and earlier and more accurate diagnoses of and interventions for these disorders.”
Most of the approximately 7,000 to 10,000 known rare diseases disproportionately affect children, adolescents and young adults.
Learn more about rare disease research at Sanford Health.
About Sanford Health
Sanford Health, one of the largest health systems in the United States, is dedicated to the integrated delivery of health care, genomic medicine, senior care and services, global clinics, research and affordable insurance. Headquartered in Sioux Falls, South Dakota, the organization includes 46 hospitals, 1,500 physicians and more than 200 Good Samaritan Society senior care locations in 26 states and 10 countries. Learn more about Sanford Health’s transformative work to improve the human condition at sanfordhealth.org or Sanford Health News.
About the National Center for Advancing Translational Sciences (NCATS): NCATS conducts and supports research on the science and operation of translation — the process by which interventions to improve health are developed and implemented — to allow more treatments to get to more patients more quickly. For more information about how NCATS helps shorten the journey from scientific observation to clinical intervention, visit https://ncats.nih.gov.
