de 87:
Now, there are actually many potential immune agents in existence. We
talked about this at the NIDS Board meeting and some of you have heard me present this
before. Unfortunately, IVGG has been thrown at a large number of children out there. IVGG
given as a bolus is basically a massive immune modulator. The trouble is, for this type of
phenomena, it certainly does not in general seem to be the right idea. You’re giving
a bolus; it wears off. You’re giving another bolus; it wears off. You are not evening
out the system; you’re hitting it up and down. So for the vast majority of children
it has not been successful. Discussed at the meeting was the fact that there may be a
small group of your children that IVGG is correct for. But, if it is correct – the
information was filled in from the expertise there –you would do it by an entirely
different protocol than is being done with your children.
Steroids are being thrown at your children right and left. The trouble
with steroids is that they shut down the immune system, and also destroy a child’s
body. They are not a safe, long-term answer for any of your children.
Chemo-therapeutic agents. The NIH, as I said, is talking neuroimmune.
They have a disorder called PANDAs, which is a strep-induced OCD. But, what are they
thinking about is treating those children with penicillin, chemo-therapeutic agents. What
I would say to all of you, again, is we’re dealing with children. We have got to
creatively look at new choices and new ideas to give them a healthy brain and body, not
agents that are going to hurt them.
Interferon is a potent immune modulator. It has actually not been
successful in many things done, but as discussed at the NIDS Board meeting, there may be a
small segment of children that it would help. But unless you identify who those children
are, you’re not very likely to have success.
Immune Modulators. Kutapressin, which I presented before, is what I term
an antique model – it was licensed in the late 1940’s. It’s derived from
pig liver. It will never go through pure new FDA trials. The company that owns it is long
past the patent on it. They’re not going to invest millions to re-license it. But
thankfully, it’s legal. Thankfully many of your children are doing well with it. And
it at least helps to buy some time until we can get to the new agents.
What I’m hoping we can do to change the choices medically is that
by giving the right markers and the right approach to the pharmaceutical companies, we can
bring into play new agents that have evolved because of HIV research and other immune
research in the last few years. They are basically sitting on the shelves. They
haven’t been licensed so I can’t even as a doctor electively write prescriptions
for them. But, if we can get them into trials, I believe a number of them will have the
ability to help the children.
