Johannes
New Member
I tried to figure out how much it would cost to try Rituximab and, if it works, keep taking it.
The dosing is based on body surface, which for me is 1.82 m2 (I'm on the tall and skinny side). The dose I would need is therefore 900mg, which costs about $10k. I believe the 2015 Rituximab study by Flugge/Mella used about 6 doses of Rituximab, which would end up costing about $60k
However, it seems like most people who respond to Rituximab, already respond after two doses. I am concluding this from the fact the the rate of responders in the first 2-dose Rituximab trial from 2011 was very close to the that in the second 6-dose trial. The main difference between the first and the second study was that with 2 doses the results didn't last as long as with 6 doses. Therefore, $20k might be enough to see if Rituximab works. Then, if it works, the next step would be to raise enough funds to keep taking it.
Once patients have established with a $20k trial that the drug works for them, they might have more success raising funds for ongoing treatment, which would ensure that the results last. According to the 2015 study, it takes about 6 doses at a cost of 60k to stay well for two years, which comes down to a cost of 30k/year. That's still a lot of money, but people who are lucky enough to have middle-class friends or relatives, it might be able to raise those funds. If Rituximab works well enough for patients to return to work, they might even be able to pitch in themselves toward the cost of 30k/year. Unfortunately, many people with ME/CFS don't have the network of support to make this possible, but this may at least be a way for those who do.
In a few years time there might be a biosimilar to Rituximab, which might reduce the cost by maybe 50%. From what I read about biosimilars, they don't reduce the cost as much as generics, as it takes a lot to manufacture them. For example, patents for Rituximab have already expired in some countries, but still no company has successfully been able to copy it. They seem close though (google "rituximab biosimilar").
The dosing is based on body surface, which for me is 1.82 m2 (I'm on the tall and skinny side). The dose I would need is therefore 900mg, which costs about $10k. I believe the 2015 Rituximab study by Flugge/Mella used about 6 doses of Rituximab, which would end up costing about $60k
However, it seems like most people who respond to Rituximab, already respond after two doses. I am concluding this from the fact the the rate of responders in the first 2-dose Rituximab trial from 2011 was very close to the that in the second 6-dose trial. The main difference between the first and the second study was that with 2 doses the results didn't last as long as with 6 doses. Therefore, $20k might be enough to see if Rituximab works. Then, if it works, the next step would be to raise enough funds to keep taking it.
Once patients have established with a $20k trial that the drug works for them, they might have more success raising funds for ongoing treatment, which would ensure that the results last. According to the 2015 study, it takes about 6 doses at a cost of 60k to stay well for two years, which comes down to a cost of 30k/year. That's still a lot of money, but people who are lucky enough to have middle-class friends or relatives, it might be able to raise those funds. If Rituximab works well enough for patients to return to work, they might even be able to pitch in themselves toward the cost of 30k/year. Unfortunately, many people with ME/CFS don't have the network of support to make this possible, but this may at least be a way for those who do.
In a few years time there might be a biosimilar to Rituximab, which might reduce the cost by maybe 50%. From what I read about biosimilars, they don't reduce the cost as much as generics, as it takes a lot to manufacture them. For example, patents for Rituximab have already expired in some countries, but still no company has successfully been able to copy it. They seem close though (google "rituximab biosimilar").
I would be interested to learn why biosimilars are so different from generic drugs or to put it another way why drugs like Rituximab are so much more difficult to copy...
