Hospitals are paid today according to an antiquated system set up in 1983, the same year the Orphan Drug Act was passed to incentivize the development of orphan disease treatments. We’ve come a long way in getting those treatments, but nothing about hospital reimbursement has changed in all that time. The more extremely rare a condition and patient, the more a hospital may want to turn them away with minimal care.
Please sign this letter to kick off an effort to change this almost 35 year old inpatient hospital payment system so that hospitals are able to care for rare patients like the ones we serve.
Please email Monica Weldon at firstname.lastname@example.org if you have questions and/or would like to sign this letter.