Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: Christine Mary on October 08, 2006, 05:18:59 PM

Title: ONLY $800,000!
Post by: Christine Mary on October 08, 2006, 05:18:59 PM
What is being done to find a cure for Thalassemia?

While there are many promising research areas (fetal hemoglobin induction, gene therapy, cord blood and bone marrow transplant, alternative iron removal therapy, blood substitutes), unfortunately very little funding for medical research is being directed toward finding a cure for Thalassemia. In 1999, the National Institute of Health (NIH) awarded medical research grants worth only $800,000 for Thalassemia research, as compared to $10 million for cystic fibrosis (a genetic disorder primarily affecting Caucasians) and $24 billion for cancer research. The $800,000 supports four researchers with annual grants of $200,000 each. Medical researchers need more funding to assist them in their efforts – currently their hard work is based on their dedication and a minimal research budget.

Title: Re: ONLY $800,000!
Post by: namitha on October 23, 2006, 08:52:39 AM
Hi Christine,

Sorry I am a foul mood today so I must say that nothing much is being done for thalassemia. It is an orphan disease. Check out this link (

I mean how many thals are there globally. Compare it with the number of people who have CF or cancer. Majority wins Christine. Even with something as critical as life saving research, politics rules. We need a really strong godmother or godfather I should think. I hope doctors and researchers read our posts and understand that we really need to find a cure.


Title: Re: ONLY $800,000!
Post by: emersive on October 24, 2006, 04:42:24 PM
How many thals are there in the world?
Title: Re: ONLY $800,000!
Post by: Narendra on October 24, 2006, 05:02:09 PM
How many thals are there in the world?

I do NOT think we can get the exact figure as thousands of thals go undetected and die without knowing what was the cause?

Also, are you talking about Thal(Major), Thal(Intermedia) or Thal(Minor)?

There are countries like India where roughly - 10000 kids are born each year with Thal(Major). An estimated 4% population of the more than 1 billion carry the Thal(Minor) gene

This site might help you with some information on the stats of different countries

Title: Re: ONLY $800,000!
Post by: Andy Battaglia on October 24, 2006, 06:26:35 PM

The most severe form of the disease, beta thalassemia major, affects 300,000 patients worldwide.

I think this number is underestimated. It is estimated that there are well over 200 million trait carriers in the world. Over 30% of the population of Thailand are trait carriers. My own feeling is that most majors in India, Thailand, Pakistan and much of Asia are not counted or treated.

I think that it is a mis-statement to say there are not enough thals to attract the attention needed. I feel the real problem is that most majors live in countries where treatment is scarce and where treatment is good there aren't so many thals. If this was reversed and thal was a major problem in the west, suddenly thal would be important enough to attract attention. Thal is seem mostly as a problem for poor non-whites and doesn't get the emphasis. This is why it becomes our task to find ways to spread the word. Thal is a much bigger problem  than the world realizes. Let's get it the attention it needs.
Title: Re: ONLY $800,000!
Post by: namitha on October 25, 2006, 10:29:49 AM

Andy is 100% right. Thal is concentrated in poor countries like India, Pakistan etc. It makes my blood boil that it is not taken seriously and not much research is being done. If thal populations were to escalate in the first world countries, maybe medical researchers will sit up and do something. Till then, it's the poor cousins' problems. Who cares?

Angry Namitha  :mad