The Biggest Killer - Transfusion hemosiderosis

 This is something I wanted to post from a long time. We are losing our thal majors at an alarming rate due to transX siderosis  . I am a mute witness to my thal mates dying out one by one. Not everybody can afford Desferal. Kelfer is available at a competitive rate of $6 for 50 capsules, but some thals cannot tolerate Kelfer. I am one of those who could not tolerate Kelfer but I am one of the fortunate few who can afford Desferal. I have been on Desf from the past 20 years.

We seemed to have reached a dead end. While our thal mates across the world in the US and Europe have access to the GREAT EXJADE, our thals in Bangalore are miserably waiting. In the process of waiting, our patients are dying. Exjade seems to be the only hope, but the hope is causing hopelessness. Perhaps Exjade will arrive when the market is completely closed and no more thals are there to take it. Sorry this sounds sarcastic, but this is the way I feel and this is what my thal mates at my center feel. I AM THEIR VOICE. Not everybody has access to internet at home or even a computer!

While I am at it, I must tip my hat to CIPLA for Kelfer. It has saved quite a few lives and those who are able to tolerate it are saved. For the rest, either it's Desf or the road to heaven.

Regards,
Namitha

Hello Namitha,

Thank you for sharing that... I am really sorry to hear about the situation where you live. 
I think this frustration is felt in many countries around the world, and by people with many different conditions.  Having a generic drug manufacturer like CIPLA in your country is a bonus at least.  The US is making it more difficult for countries around the world to use generic manufacturers by imposing certian conditions in bilateral trade agreements. 

Health is a human right, and yet companies that make medications are only answerable to their shareholders.  They do not have any moral obligations.  Governments however, do have moral obligations to be caretakers of their people.  I hope that there is a strong voice representing people with thalassaemia to your government to get them to pay attention.  I wish we could find an easy solution to the problem!

Hang in there...  :hug
Sal.

Hi Sal,

Thanx for the support. Health far from being a basic right is a commodity. The more ill health people have, the more money drug companies can make. Patented drugs cost a bomb and few people can buy it. It's a real shame! Besides, in a country like ours with a population of Billion plus, the government already has its hands full of other troubles. Yes, thal associations are trying to have our voices heard. The urgency at the moment is the need for an oral iron chelator - the GRAND EXJADE. We are hoping to get it atleast by June 2007.

Thanx.

Regards,
Namitha

Hi Namitha,

Sad to hear your side of the story. I can understand how it feels when loosing a frnd Thalmate. I've been through it.
Things are not much different at our side though. Some of TranX centers here are doing a great job by providing free desferal, Kelfer and even infusion pumps to needy patients, but still to cover a huge Thal population, much much more resources are required.
But here in Pakistan, uptil now, no news of Exjade coming here. We too are waiting eagerly for it so that we can be free from Desferal pain  once and for all......

Regards,

Tariq.

Hi Tariq,

I am so glad to hear that some centers are providing free stuff for thals. It is a good step to making health care available to all. Unfortunately much needs to be done as not all thals have equal access to healthcare. All of us feel that exjade will eliminate a big problem in thals.

Let's hope for the best.

Regards,
Namitha

Hi,
Here at Bhubaneswar, Orissa (India), a local organisation called TASWELS is also providing free Desferal to the needy one and for those who can afford to pay, the organisation charges only a reasonable amount for the same. Thanks to TASWELS (ORISSA).

Hi!
    Namitha,there is a good news (comparitevely) Exjade has been launched in INDIA!It was launched on 18-19 nov this year. In delhi there was a thalassimia confrence and they launced it but it is quite costly(about 75000/- per month) and they say that it will be avilable in market next year with somewhat low cost.So lets hope for the best

RIYA