March in DC for Iplex 11/11/08

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andyvaughn

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Well, Team Iplex has finally done it. We have written to Insmed, Genentech and Tercica, the media outlets, etc. What we have gotten is a public policy statement by Insmed apologizing that they can only give Iplex to Italian ALS patients. Genentech and Tercica have maintained silence.
Now we are taking the show on the road. On November 11, 2008 PALS and CALS from around the globe are marching on DC, our permits are pulled for the Capitol Terrace, the police have assured us this is a highly visible and accessible area. We are publicly requesting, demanding, begging for PALS worldwide to be given access to Iplex immediately.
If you want to join us, you would be welcomed by all PALS/CALS with open arms. We just want the same rights to pharmaceutical therapy that the Italians are currently enjoying, I don't think that is too much to ask for my husband, or for any PALS in the world...Jim and I will be there, hope to meet many of you there too....
Andrea - wife of Pals Jim
 

linray

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I hate to sound stupid....what is Iplex?
 

andyvaughn

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Not a stupid question at all. In fact, since the drug was pulled from the world wide market in March 2007 - most probably haven't heard of it.
Iplex is a biological pharmaceutical product, it's specific combination is IGF1BP3. What that means is it is Insulin Like Growth factor and Binding protein 3. IGF1 has long been researched in ALS. In the lab dish (in vitro) IGF1 is neuro protective, prevents apoptosis, protects against glutamate toxicity, spurs motor nueron outgrowth, amongst other wonderful properties of IGF. However, in human trials, IGF has had mixed results. A large trial study in American in the late 90's on ALS patients showed that at a dosing of 1mg/kg daily, there was statistically significant slowing of disease progression. However, a second study in Europe failed to produce the same results. I have read multiple abstracts on why the European trial failed, it is thought to be poor controls, poor end points and low dosing (0.5mg/kg daily).
IGF1 has a very short half life, does not cross the blood brain barrier, and has a high side effect profile. However, the addition of the binding protein in Iplex overcomes these obstacles. It extends the half life to 54 hours, increases the area under the curve (time drug is in body) by over 100%, crosses the blood brain barrier, and has limited side effects.
I have the records of 5 patients in Amercia with ALS who took IPlex, ALL of them had significant RECORDED gains in function. I have link after link from the Italian Citizens, who currently enjoy Iplex use for their ALS patients, stating that Iplex has halted their disease progression, improved thier function, and improved their quality of life. The former Ministry of Health, a physician himself, states that it is the ONLY drug he has ever seen to improve ALS patients.
The reason we can't get this drug is a patent settlement agreement removed it from the market, however, as the Italian ALS patients were already on it, the Italian Ministry of Health was able to obtain continued access to Iplex - and their patients enjoy the benefits... while our pals are dying.
This is why we are marching in Washington DC 11/11/2008. Pleas to the companies in question have gone unanswered. My husbands physician even filed an emergency individual use request, and was declined. We won't let this issue rest until PALS world wide have this therpeutic drug.
Andrea - wife of Pals Jim.
 

linray

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Andrea
thank you so much...
 
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