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Children with hereditary anemias have been provided with Exjade

Hereditary anemias (beta-thalassemia major and congenital Blackfan-Diamond aplastic anemia) are fairly common among Russian children, especially in southern regions of our country (Dagestan, Ingushetia, Stavropol krai, Krasnodar krai), and less frequent in other regions. Without donor RBC transfusions, the life expectancy of such patients is about three to seven years.
A complication of life-saving treatment of these diseases is iron overload, which significantly deteriorates the condition of all organs and systems, leading to early death of such patients at an age from 10 to 17.
To cope with this dangerous complications, so-called iron chelators are used. These drugs remove the excess iron from the organism. Two of such medications have been registered in Russia: Desferal in the form of solution for injections and Exjade in the form of dispersible tablets (Novartis, Switzerland). Iron chelators should be administered throughout any patient's life. Therefore, the drug in tablets (Exjade) is significantly more advantageous for children.
None of these drugs are presently included in the list of vitally important medications to be provided for free in Russia, and the parents have to buy them for their own money. As a result, children receive the necessary drugs very rarely and their treatment becomes a great deal less efficient; children suffer from early disabilies and die at a young age.
Presently it has been proposed to include this drug in the list of vitally important drugs provided to Russian citizens for free, but so far it has not been done.
Exjade is manufactured in the form of 250-mg dispersible tablets, 84 tablets per pack. Each pack costs about 43,000 roubles ($1680).
Specialists of the Russian Children's Clinical Hospital regularly examine 17 children of different ages with grave hereditary anemias. These patients receive treatment at the Out-Patient Department and Department No. 19 of our hospital in the form of monthly RBC transfusions.

Hematologist, Head of Out-Patient Department, Russian Children's Clinical Hospital
N.S. Smetanina

News

22.11.2009 In 2008, your help allowed to provide Exjade to 12 hospital patients with hereditary anemias. Since January 2009 , the firm producing Exjade provided this drug to children free of charge, within its own charitable program. Now, unfortunately, Novartis has ended this program, and the patients will have to search for money to buy Exjade since December 2009. Therefore, we are resuming the fundraising to purchase it.

23.12.2008 Money has been raised to pay fo the treatment of Andrei Chipilev, Dasha Belous and Zamin Nabiev. For Zamin, 2 packs of Exjade worth 172,287.92 roubles ($5940). have been bought. Andrei Chipilev and Dasha Belous will get this drug within a special Novartis program since January 2009.

19.11.2008 Money has been raised to buy Exjade for brothers Roman and Artem Grigoryan. We thank the Finstroi company and Svetlana Gustas, who transferred 86,000 roubles ($3125) for the boys.

8.11.2008 We are completing the urgent fundraising for treatment of Serezha Bizyaev. Many thanks to all who took part in helping this boy, especially to Sergei, who donated 100,000 roubles ($3630), the major part of the required sum. Two packs of 500-mg Exjade tablets have been ordered for the boy. This amount of the drug will be sufficient till the end of the year. Since the beginning of 2009, the children are to receive iron chelators free of charge within a charitable program launched by Novartis.
But three more children also need urgent help and cannot wait till New Year. Exjade is vitally necessary for them right now. Roman Grigoryan needs two packs of Exjade worth 172,000 roubles ($6250), his brother Artem needs one pack worth 86,000 roubles ($3125), and Zamin Nabiev also needs two packs worth 172,000 roubles ($6250).

31.10.2008
For the time being, we are interrupting the fundraising for the benefit of Aisel Mikailova, Marina Revenkova, Anastasia Rodina and Gevork Khandzhan: these children have been provided with the necessary amount of Exjade for three months.

9.09.2008
We remove the story of Anna Novikova from the first page of our Web site. Special thanks to Elena, who provided money for a complete two-month course of Exjade therapy for Anna.

15.08.2008
Fundraising for Renat Gamzaev has been completed. The amount of Exjade sufficient for one year has been provided. We thank everybody who helped this little boy.

7.06.2008
Exjade worth 130,083.72 roubles ($5310) has been bought for Adian Ashkaev.

30.04.2008
The money raised by the Vremechko TV program for Marina Revenkova was used to buy 4 packs of Exjade (500 mg N 84). This amount will be sufficient for almost 1 year.

Elena brought 3 packs (500 mg N 84) of Exjade from Germany for Anastasia Rodina. This amount will be sufficient for six months.

They have helped
I have a son named Zamin Nabiev. He is 8 years old. He has a very grave illness: β-thalassemia. Exjade, the drug that is necessary for him, costs 30,000 roubles (over $1000) per month, and my salary is 22,000 roubles... It is barely sufficient to cover the daily expenses of our family: wife and two children. My wife has no job now, because our younger child is only 1.5 years old. And our elder child is ill.
Please help us if you can!

With hope and respect,
father of Zamin Nabiev

The doctor's comment

Zamin Nabiev, b. 1999, has been under observation at the Russian Children's Clinical Hospital since 2000. Diagnosis: β-thalassemia major.
The boy receives regular monthly RBC transfusions. Because of these transfusions, he has developed secondary iron overload and consequent complications. Now he should receive treatment with drugs removing extra iron. The necessary dose of Exjade is 500 mg/day, 370 tablets (500 mg) per course.

Hematologist M.V. Krasilnikova.
My sons Artem and Roman Grigoryan need Exjade.
There are four children in our family. Two of them are disabled. We also take care of my mother (80 years old). We cannot buy this drug by ourselves, because my salary is verey low and my husband cannot find a permanent job with a good salary. Also, I have to go to hospital for blood transfusions to my children each month, and my entire salary goes to pay for these journeys. Our life is very difficult, and we just cannot pay 1,100,000 roubles ($42,300) to buy the necessary amount of the drug for our two children.
Please help us!

Mother of Artem and Roman Grigoryan

The doctor's comment

Roman Grigoryan, b. 1993, diagnosis: thalassemia major. Secondary iron overload. Secondary cardiopathy. As a result of monthly RBC transfusions, the child has developed second iron overload and, owing to it, serious complications (cardiopathy, delayed physical and sexual development, formation of liver cirrhosis). The child needs treatment with Exjade in 500-mg tablets: 730 tab per course of therapy.
Artem Grigoryan, b. 2000, diagnosis: thalassemia major. Secondary iron overload. Since the child has developed secondary iron overload and complications (symptoms of cardiomyopathy) as a result of regular RBC transfusions, he needs therapy with Exjade: 370 tablets per course.

Hematologist M.V. Krasilnikova
My daughter Dasha Belous needs Exjade. She has been suffering from Blackfan-Diamond aplastic anemia since birth. However, she is very talented at her 10: she is an acknowledged young painter in our region, and her art works have won various prizes.
We need 750,000 roubles ($28,800) to buy the amount of this drug necessary for the treatment course. I am unable to raise such a sum all by myself, and Dasha's father, my former husband, does not help us at all. I am a personnel manager, but I can't save much money, because I often have to take my child to hospitals in Togliatti and in Moscow.
I would be very happy if you could help my daughter cope with her illness.

Tatiana A. Belous

The doctor's comment

Dasha Belous, b. 1997, has been receiving examinations at the Russian Children's Clinical Hospital since 1998. Diagnosis: congenital Blackfan-Diamond aplastic anemia. Since the child receives regular RBC transfusions and has developed secondary iron overload, treatment with Exjade 1000 mg/day is necessary. The course of therapy includes 730 tablets (500 mg).

Hematologist M.V. Krasilnikova

I am asking for financial help in buying Exjade for my son Andrei Chipilev, four years old. He has been suffering from Blackfan-Diamond anemia since birth. He needs regular RBC transfusions, which lead to iron overload, and this extra iron should be removed with Exjade.
Unfortunately, our family is far from rich. I am a single mother (Andrei's father left us as soon as he learned our son's diagnosis and understood how difficult further treatment will be), and, besides, I cannot get a permanent job, because I often have to accompany my son to hospitals. And now we must somehow find 370,000 roubles ($14,500) to buy Exjade.
My son and I, we both hope that your help will come in time!

Valentina Chipileva

The doctor's comment

Patient Andrei Chipilev, 4 years old. Diagnosis: congenital Blackfan-Diamond aplastic anemia. After frequent RBC transfusions, the child has developed iron overload, which is harmful for his organs. The boy needs 360 tablets of Exjade 500 mg. The total cost is 370,000 roubles ($14,500).

Hematologist N.S. Smetaninia

My son Sergei Bizyaev has been suffering from thalassemia for 10 years. He regularly receives washed RBC transfusions, and excess iron has accumulated in his body. He has leg pains now and even walks with difficulty. Sergei is still optimistic and tries to convince me that he will be all right. But, to feel all right, he needs Exjade, and this drug is very expensive. Our family has no extra money: we have two more children, and their father has died.
Please help us buy Exjade if you can. My child wants to live and to be happy, just like all other children.

Sergei's mother
Tamara Bizyaeva

The doctor's comment

Our patient Sergei Bizyaev, 10 years old, has thalassemia major. He needs 180 tablets of Exjade 500 mg and 900 tablets of Exjade 250 mg. The total cost of the drug is 650,000 roubles ($25,500).

The child URGENTLY needs this drug. As a result of RBC transfusions, the child has developed iron overload, which is harmful for his heart and liver.

Hematologist N.S. Smetanina
My daughter Anna Novikova suffers from hemolytic anemia. She needs Exjade, a very expensive drug. She is to have a two-month course of this therapy, and we hope that it will remove the excess iron accumulated in her organism owing to this disease. It is very difficult for me to buy this drug myself, because I am disabled and 240,000 roubles (about $10,000) is an enormous sum for me. I rely on your help and kindness!

O.I. Novikova

The doctor's comment

Patient Anna Novikova, 11 y.o., is ill with hereditary hemolytic anemia owing to abnormal unstable hemoglobin; secondary iron overload. She needs 180 dispersable tablets of Exjade (500 mg).

Hematologist of out-patient center N.S. Smetanina

 

Marina Revenkova

Anastasia Rodina

Renat Gamzaev

Gevork Khandzhan

Aisel Mikailova

We need your help in purchasing Exjade, a medication needed by the following patients:
1. Anastasia Rodina, 14 years old, needs 1095 tablets for one year's treatment
2. Renat Gamzaev, 4 years old, needs 365 tablets for one year's treatment
3. Marina Revenkova, 12 years old, needs 730 tablets for one year's treatment
4. Adyan Ashkaev, 1 year old, needs 200 tablets for one year's treatment
5. Gevork Khandzhan, 17 years old, needs 1460 tablets for one year's treatment
6. Aisel Mikailova, 11 years old, needs 730 tablets for one year's treatment

The total amount needed by all these children for the next year costs about 2,000,000 roubles ($83,330).


Many thanks to all who have responded!