I'm sorry to say that Brandy, hippievamp passed away 2 1/2 years ago.
I knew Brandy for a long time and the only time she did well was when she was able to go to Canada to get Ferriprox in a program that eventually changed to not allow non-Canadians to take part. Brandy died before Ferriprox was finally approved in the US. How may others like Lisa, also died because the drug was not approved, even though it had been used since the late 1980's in India, keeping patients alive?
I have previously stated my views about this. See http://www.thalassemiapatientsandfriends.com/index.php/topic,1855.msg15589/highlight,miriam.html#msg15589
Oh, it literally turned my eyes into tears. She was really a cheerful lady. I was reading her posts the day of posting this topic. How I feel sad because I could not get to talk to such a wonderful spirit. Same like Lisa, Sajid and many others. It eats and hunts down my heart somewhere, deep down, its like even knowing them but not knowing them. All I could do is now read their previous posts preserved in memory of those heavenly souls. I'm really disheartened to hear that.
I'd say Brandy was forcefully left to die. She has not died, she has been murdered, by US politics, by US pharmaceutical companies and FDA. I did indeed read your thoughts on that post, the same day. They literally left people in past just to die, how cruel human race could be? Do we pass this to our new generation?
All the time I knew Brandy, I also knew people from India like Poirot and Isis who both have used kelfer for a couple decades. I saw them doing well, while Brandy struggled in the country that is supposedly more advanced. Advanced in allowing corporation profits over the lives of people.
I used Kelfar too for around 13 years. Had joint pains but overall its really great. Too bad it could not suit me now. My foot bones are a bit de-shaped (as well as the leg joints, like a little bigger) due to it I guess. Although have no problem due to it in walking or even running.
I believe I was protected from Diabetes only till I was taking Kelfar. In May 2008, I started exjade. And unfortunately, I only took 400mg dose (not as per my weight, foolish me, we didn't concerned it with doc) and so I guess while from that time to January 2009, iron accumulated very well in my pancreas and I got caught up by diabetes.
I'd take back that mistake in a second if I could. My whole life has been turned into two parts. Life before diabetes and osteoporosis, and life after the same. Good things happened before diabetes only, so I always get reminded or think of things as what if this was that and what if that was this and what not. Anyway.
I very much commend over your thoughts and feelings.
Perhaps that's what USA's FDA and drug companies should learn from third world countries like us? Valuing morals and one's life? Yes, we're backward perhaps in many parts and areas of development, technology, but one thing, we're way ahead and valuing people's lives more over than money. This is my feeling towards the USA's government and FDA and not towards any of its citizens, so please do not be offended and I pardon if I offend anyone. I know the citizens are struggling a lot too because of this. it's only people like you and me, after all.
I recently watched a documentary named "Cancer is a serious business" where a doctor (I forgot name, perhaps was from some Russian or Ukrainian) even found cure in early 90s about cancer and is fighting till date with FDA to release his drug and research but only because the companies won't let someone ruin their business, it has never been neither would approved by FDA, you bet.
India is a bit good in that matter. Recently the Supreme Court of India did passed an action against Novartis for filing a lawsuit against Cipla for releasing some cancer drug similar to Novartis which was more than 10 times costly. So now you can see what these companies in today's word are at.
However, certain companies, such as Purtian are really god sent which prices well and supplies quality nutrients. But I guess these giant players like Novartis and as such won't be coming down from their cunning anytime in future.
Just my two cents.
-P.