Financial assistance for Thalassemia patients.

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!

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

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!

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.

to the family!

Hats off to you Baron! You are doing an amazing deed! 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.

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.

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!!

Treatment is Albania is rudimentary at best. Blood and desferal only, and the safety of the blood supply is suspect. Thal children need regular testing and observation and as they grow, things like hormonal treatments may be necessary, depending on how well chelation has gone. As Antonella gets older, she will need care that will not be available to her in Albania, but is readily available in the US. The comprehensive care programs followed by the major thal centers in the US are light years beyond the treatment found in eastern Europe. Things like liver MRI's and bone density scans are a must for assessing a patient's health.

The difference in care can be summed up in this sentence. In the US, thal is treated as a manageable chronic disorder and in Albania it is basically an eventually fatal illness.

Andy,

Your information has been so helpful.  You have definately fueled our compassion for this little girl.

Do you or anyone else know what kinds of developmental issues thalassemia might cause ie. growth, mental, motor etc?  Can kids with this disorder be picked out in a crowd as having Thalassemia based on appearance, physical ability etc.?  I have read a lot of the internal effects and have not noted much about any external ramifications.

This site has been one of many blessings we have experienced on this journey.

Thank you so much.

Untransfused or under-transfused thals will have skeletal malformations due to the expansion of the bones. This is due to the excessive bone marrow activity that occurs when the body tries to manufacture more red blood cells. The bone marrow increases, which expands the bones. This is often noticeable in protruding teeth and foreheads and can also cause damage to the bones throughout the body, rendering them much weaker than normal. Sufficient transfusion will prevent this from happening. Thals also tend to be shorter in stature but their mental development is normal and you will find that thals are often higher in intelligence than average. Perhaps the greatest danger to thals is the accumulation of iron that takes place from frequent transfusions. This can lead to developmental problems along with organ damage. Diligent chelation can prevent this also. With current treatments, so many of the problems of thal can be avoided or minimized. The prognosis for a thal today is much better than ever before and with compliance to treatment, a thal today can expect to live into their 50's or even 60's, with the lifespan constantly extending, due to improvements in treatment.

Welcome Baron6,

As always Andy is right on

With proper medical treatment and love Antonella will thrive.  I salute your compassion and willingness to take this journey. 

A question to ask Eva Chin-Li at CAF, would be if she could put you in communication with other families who have adopted children with thal.  A few have attended the annual TAG (Thalassemia Action Group) conferences.

This is a wonderful event to attend (sponsorship is available for this event), Drs from the thal centers present medical information, there is a parent sessions where parents share information, etc. there is a children’s session where they play games, do arts & crafts, and they could ask questions about the pump, transfusions, medicine etc. 


God bless.


ThalGal

Baron6 - It is amazing that you are adopting a child with thal major. You will have a profound impact on the quality of her life. I think ThalGal's idea of contacting others who have adopted already is really a good one. I met such a couple at the only TAG conference I attended. Good luck to you, Jean

Hi Baron6,
Thats great of you  wanting to adopt,there needs to more people like yourself out there!
Just from reading your post i gathered i think they meant her treatment was less then what she really needs,means  in albania she probably isnt getting the best care there and probably more could be done for her but from what i know albania is a poor country & going to Americia she will probably recieve better treatment there & therefore will be in better health & she can have a long lifespan if all her treatment & medication is done from  an early age and all the time,dont let thalassemia put you off adoption.Thalassemia patients these days with proper treatment can live till there 50 or 60.

Please confirm this information from a source on international adoption.

She says children with Thalassemia, that is undertreated, are ALWAYS growth retarded.  The fact that our little girl is tall means she may be older than she is.
She says Thalassemia eventually leads to diabetes and liver failure in the 20's and 30's both which can be treated but complicate life.
She says Thalassemia results in delayed puberty or issues with puberty in general.

Please let me know if this information is accurate.

Thanks!

By the way I did find out the answer to the original question about finances, there is assistance available and her care should not cost us anything at least until she is 18.

Those statements about thalassemia are true ONLY when the patient is under treated. The fact that she is tall may mean she has been properly transfused. It is the lack of blood that is the biggest impediment to growth when young. Diabetes and liver failure are both a result of iron overload and both can be avoided with proper chelation. Delayed puberty is also a result of iron overload and its effect on the pituitary gland. Chelation compliance is absolutely necessary for good health in thalassemics. Recent research shows that diabetes can even be reversed in thals if caught early enough and intense chelation intervention takes place. I can show you thals in their late 30's with very low liver iron concentrations because they chelate and keep their iron so low.

It is so frustrating to see the incorrect information given out by so many people, including doctors, about thalassemia. Treatment for thal has changed dramatically in the last 3 decades and the lifespan of thals has also lengthened by decades. With compliance to current treatment, a thal can now live a long productive life and even having children is no longer impossible. We have several thal majors women in this group who have 2 children.

And the future looks even brighter with trials for a gene therapy cure on thals ready to begin in the US next year, and also continuing research into new and better and safer treatments taking place.

Hello Baron6,

From my perspective I would say this info is pretty much very basic and old text book info.
 
IF untreated, yes, the chances are high of being short stature.  Iron overload with out proper chelation therapy does affect the organs - heart, liver, and pancreas. 

Here is a link to “About Thalassaemia” published by the Thalassaemia International Federation; Eva Chin-Li may have a hard copy to mail to you.
http://www.thalassaemia.org.cy/MyData/Books/About_Thalassaemia.PDF[/url]

There are patients in their 50s & 60s, there are patients who are professionals, married with families.  With proper treatment and strong family support anything is possible.

Also, check with you State for eligibility for disabled children - Social Security Disability.

Eva Chin sent me many of the excess thal books when CAF moved. I've got tons of books but no money for postage. If anyone in the US wants any of these books, message me. If you can pay the postage they are yours.  The books are:

About Thalassemia

Guidelines for the Clinical Management of Thalassemia

Prevention of Thalassemia and other Hemoglobin Disorders

All are published by TIF.

If you send me your zip code and which books you want I can tell you the postage.