Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Andy Battaglia on May 08, 2011, 07:44:35 PM
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I want as many people as possible to bring this up at every opportunity at the TIF conference. If you see Dr Perrine, please ask for her comments, also.
Many have seen the latest updated prescribing instructions for Exjade, along with the bold black box warning near the top of the instructions. This can be seen attached to a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,1928.msg16165.html#msg16165 Many have expressed shock and fear after reading the black box. Obviously, when we talk about chelators, there is still much room for improvement. There is a chelator based on desferal that would require administration by IV once per week for about an hour. Imagine that. A Chelator you use only once per week. No jabbing yourself. No nausea from your oral chelator. No risk of the several dangers present with Exjade. This drug is called S-DFO (starch desferal). This drug went through stage one trials but the company was never able to secure the financing that would allow it to continue trials. As a result, the patent has now been turned over to another company as payment for a loan. This chelator is just sitting while this company hopes for a buyer. The researcher who developed this drug is more than willing to take charge for any new company that wants to buy this patent and move forward. You, the patients need this drug to be developed and made available.
What I am requesting from anyone going to TIF, is to look for every opportunity to raise the question as to why S-DFO is not being developed and what can be done to bring this drug to trials because the patients need a safe easy-to-use chelator. Dr Perrine is on our side in this and should be seen as an ally. She will be presenting the latest info about her hemoglobin inducing drug at TIF, so please try to talk to her. At any chelation talk, please bring this subject up. We need to get it back in the public eye. What happens in the realm of thal treatment should not be decided only by how much money can be made.
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I hope Tariq,Nur,Dore,Ayesha will take a note of that.
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Hmm that indeed is a potential issue to inquire about. We'll see if we get a chance to bring that up in a relevant session.
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did anyone raised this issue in Thalassemia conference that recently took place in turkey ????
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Dore mentioned attending Dr Perrine's talk but she said she understood very little.
I am one of the few non-medical people who can attend the scientific presentations and understand what is being said. I feel that the thalassemia community is doing itself a disservice by not making sure I can get to conferences.
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I did ask about DFO, but they were not interested to reply first.. and they ended the query by saying "They need funds, they doesn't have enough funds" that's it :dunno