Nov. 12, 2025 - Epoch Times
01:58
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| Time | Text |
|---|---|
| In 1983, the Orphan Disease Act was introduced. | |
| 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. | |
| And they came up with these rules and regulations, stimulations. | |
| They gave 50% tax credit to people who would invest in clinical trials for orphan diseases. | |
| Today it's 25%. | |
| They would give all sorts of stimulation through finance, et cetera, to companies who would dedicate themselves to curing rare diseases. | |
| And it was a wonderful legislation. | |
| And that there's 6,000 rare diseases. | |
| 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. | |
| 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. | |
| You have to have different rules. | |
| But it was a wonderful piece of legislation. | |
| And that's why they were called rare diseases. | |
| In the end, they were orphaned by big pharma, supposedly. | |
| And that's why today they call them orphan diseases as well as rare diseases. | |
| And how many companies are there that are trying to go after some of these? | |
| Yeah, so up until 1983, there weren't a lot of them. | |
| 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. | |
| So now there's hundreds and hundreds of companies that are going after these rare diseases. | |
| I would say how many of them are successful. |
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