Discussion Forums > Thalassemia Major

Financial assistance for Thalassemia patients.

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Baron6:

We are currently in the process of adopting a five year old girl with Thal. Major from Albania. 

We are told her treatment in Albania consists of blood transfusions every 3 weeks and she wears a pump for the Chelatin (sp?) therapy.
We have also been told that her treatment has been less than what she really needs (not sure what this means) and that her life span may be affected.

My biggest concern is the financial side of caring for a child with a chronic health condition.  We have excellent insurance right now but that could change in the future. 

Is there any type of medical cost assistance for treatment of this condition?

What is the best treatment facility near our home in Michigan?

Any insight or advice would be very helpful.

Thanks!

Andy Battaglia:
Hi Baron6 and welcome,

For many of your questions, you should contact Eva Chin, the Patient Services Manager at the National Cooley's Anemia Foundation (CAF). eva.chin@cooleysanemia.org and/or phone 800-522-7222.

http://www.thalassemiapatientsandfriends.com/index.php?topic=42.msg300#msg300


--- Quote ---CAF is a great resource of help for all thalassemia patients and their family members.  We have a variety of programs such as the Pump Program and Patient Incentive Awards.  We also have and insurance consultant to help with insurance issues/questions.

Here at CAF we're dedicated to helping thalassemia. For more information on our programs please view our website at www.cooleysanemia.org.  I hope to hear from you!
--- End quote ---

At age 5, the damage from poor treatment may refer to skeletal changes if the transfusion regimen was significantly less than it should be. However, much damage can be prevented if she is soon in an environment where quality care is available. This is nearly impossible in Albania. If she was to be put under a regular treatment program,  her health will improve considerably and she will most likely be able to carry on a fairly normal life. I would not agree with an assessment that her lifespan has already been affected. She is still quite young and proper treatment before the onset of puberty will help avoid numerous problems that can come from thalassemia when it is not well treated.

The chelation pump is for desferal, the medicine that removes the excess iron that is absorbed from regular transfusions. In the US, there is also now an oral medicine, Exjade, that is approved for age 2 and up. Eva Chin may be able to help you find care in your area, but it would also be wise to make an annual visit for a checkup and testing at Chicago Children's Memorial Hospital.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Children’s Memorial Hospital
Chicago, IL
Ph: (773) 880-6381
Fax: (773) 880-3223


I would also ask you to read some of the posts on this site to get some real life experiences about living with thal and raising thals.

§ãJ¡Ð ساجد:
:welcome to the family!

Hats off to you Baron! You are doing an amazing deed! :clap I really applaud your decision to adopt a child that really needs better care than she is already having.

I salute all people who have and are willing to adopt Thalassemic orphans to provide them a chance to live a long and better healthy life.

God bless you.

Baron6:
Thank you,  this site has had a lot of valuable information.
I will contact Eva Chin on Monday.
Any other advice/information about care of children with Thalassemia would be much appreciated.
I want to be as informed as possible so I can make Antonella's transition to the US medically as smooth as possible.

Baron6:
Andy,

Do you know what the typical treatment for Thalassemia is in Albania and how that might differ from the treatment Antonella might receive in the US?

Thank you so much for your information!!

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