I intercepted an email between some Neuros
"For NEDA to be an effective and worthwhile goal we need
(i) Effective drugs,
(ii) for *all* people with active MS,
(iii) as early in the disease course as possible.
For that to happen we need to overcome the following hurdles:
- Education of pwMS and our colleagues (junior, senior) about the importance of early intervention.
- Individualised medicine yes, but with a drive towards early intervention – we need to make it very clear to pwMS (and colleagues) that if they choose not to go on (prescribe) DMT they are much more likely to accumulate damage and progress.
- Better management of adverse effects so pwMS can be better reassured this is in hand, or even better: effective drugs with fewer adverse effects
- Affordable DMT, otherwise we will not overcome, on a population level, the problem of having to treat so many pwMS at a young age for progressive disease".
Did the EMA/FDA & Merck Serono make a mistake to throw Movectro away?
We think so
What does this say?
No Evidence of Disease Activity means that you can not sense of any clinical worsening and there is no activity on the scans-remembering that scans don't see every thing.
There are cautious MSers and cautious Neuros who will wait and see how things go.
If there is NEDA, then the softly, softly approach maybe appropriate. However, you need to have regular scans to ensure that your MS is kept under control.
We also have to remember that drugs are not 100% effective
But what would the situation be like without aiming for NEDA?
The bad old days?
Unfortunately "affordable" and "DMT" do not appear in the same breath. Until that changes then there will be many, many people in the World who do not get access to DMT. So NEDA for "the haves" and natural history course for the "have nots".
In 2019 the first oral DMT come off patent and the non-biological generics begin to arrive....There are some generics already here that would give currently DMT a run for their money, but they can't be used because of the system in the West. Furthermore because they are not licensed for MS in the West, they won't be used in the East and South
Maybe some brave Neuros may want try to investigate the possibilities of generics, but the system is biased against this ever happening unless there is a patent and pharma in place.
Maybe because of the move to find treatments for Progressive MS, The International Community will find a way to develop generic drugs for pwMS.
Should we be holding our breath.....this is the Challenge