Epoch Times - Why There Was Virtually No Research into Cures for Rare Diseases before 1983
Aired: 2025-11-12
Duration: 01:58


=== Orphan Disease Act Revolution (01:57) ===

[00:00:01]  In 1983, the Orphan Disease Act was introduced.
[00:00:05]  Marlene Hafner, who at the time they called the godmother of the Orphan Disease Act, who's a wonderful woman who I speak to today even, they said there's no money going into curing the diseases because there's no money in it, because there's too few of them.
[00:00:20]  And they came up with these rules and regulations, stimulations.
[00:00:24]  They gave 50% tax credit to people who would invest in clinical trials for orphan diseases.
[00:00:29]  Today it's 25%.
[00:00:32]  They would give all sorts of stimulation through finance, et cetera, to companies who would dedicate themselves to curing rare diseases.
[00:00:42]  And it was a wonderful legislation.
[00:00:45]  And that there's 6,000 rare diseases.
[00:00:48]  I believe that the 1983 Act needs to be revisited, to be quite honest, because I think there needs to be some kind of separation.
[00:00:56]  Because you have a disease like sickle cell disease where 100,000 patients can't be treated like a disease leukocyte adhesion deficiency, excuse me, where you only have like 100 patients.
[00:01:14]  You have to have different rules.
[00:01:15]  But it was a wonderful piece of legislation.
[00:01:20]  And that's why they were called rare diseases.
[00:01:23]  In the end, they were orphaned by big pharma, supposedly.
[00:01:28]  And that's why today they call them orphan diseases as well as rare diseases.
[00:01:33]  And how many companies are there that are trying to go after some of these?
[00:01:38]  Yeah, so up until 1983, there weren't a lot of them.
[00:01:42]  But in the 90s and then the 2000s, a lot of companies realized there was huge money in the orphan diseases created by the Orphan Drug Act.
[00:01:51]  So now there's hundreds and hundreds of companies that are going after these rare diseases.
[00:01:56]  I would say how many of them are successful.