research questions

  • 5 Replies
  • 6848 Views
*

Offline cagammill

  • *
  • 6
  • Gender: Female
research questions
« on: November 02, 2006, 01:49:43 AM »
Hi,
I am a college student writing a research paper on thal major. I am confused about the treatment options that are available. I know oral chelators are avaiable in some countries, but are they available in all countries? (I am in the United States) Most of the research I have found is outdated, so I wasn't sure what the status of oral chelators is in the US. Any help would be appreciated!
Also, any other links or information you have about current research on treatment options would be great!
Thanks for any help you can give!
Carrie

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: research questions
« Reply #1 on: November 02, 2006, 05:22:31 AM »
Hi,

The latest breakthrough on oral iron chelation is Exjade which is available in US and EU as of now. You can get all the info about it from www.exjade.com

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline cagammill

  • *
  • 6
  • Gender: Female
Re: research questions
« Reply #2 on: November 02, 2006, 05:51:52 PM »
Thanks! Do you have any idea when exjade became available to patients in the US?

*

Offline Narendra

  • ****
  • 461
  • Gender: Male
Re: research questions
« Reply #3 on: November 02, 2006, 06:17:31 PM »
Quote
Do you have any idea when exjade became available to patients in the US?

I think it was available roughly around Feb 2006. Here is the link which mentions some users started in Feb:- http://www.thalassemiapatientsandfriends.com/index.php?topic=75.0

Although, the clinical trails might have started much earlier

-Narendra

*

Offline Andy Battaglia

  • *****
  • 8750
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: research questions
« Reply #4 on: November 02, 2006, 06:20:00 PM »
The FDA approved Exjade for use in the US in November of 2005. Since then it has slowlly gained approval in many countries around the globe, although because of its exorbitant price, it is basically only available to those who have insurance.

Before Exjade, the only iron chelator approved in the US was desferal which has to be administered subcutaneously through a needle inserted into the skin through which desferal is pumped over at least a 10 hour period, 5 or more nights per week.

There is another oral chelator, L1, which is known as Ferriprox or Kelfer, but it has never received FDA approval in the US, thus depriving US patients of a much needed drug. The reasons for it not being approved in the US are debatable, and a good book named The Drug Trial, by Dr Miriam Shuchman, has been written detailing much of the events that have led to it not being approved in the US and Canada.  L1 has been accepted around the world as a superior chelator for removing stores of iron in the heart, and also recognized as an integral component of combination therapy, but it is still not available to patients in North America. It is likely that many patients, including the founder of this group, have died because the medicine was withheld from patients. Lisa often lamented the fact that L1 was not available to her and felt that it may have been able to save her life, as desferal caused her much pain, and she was not able to be fully compliant with its use.

No chelator works for all patients, so the need for an arsenal of drugs is great. Hopefully research will bring us yet better drugs to remove the excess iron that kills thalassemics.
Andy

All we are saying is give thals a chance.

*

Offline cagammill

  • *
  • 6
  • Gender: Female
Re: research questions
« Reply #5 on: November 02, 2006, 06:33:49 PM »
Thanks so much! You all are very helpful!

 

SMF spam blocked by CleanTalk