One day the grandfather decided to entertain Savely and seated him on a horizontal bar. Savely took hold of the bar, but it was his right hand only that managed to hold onto the bar, and the left hand let go of it hanging helplessly. Savely could not explain what happened.
Photo: Êèðèëë Òóëèí
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Death Ministry Norms
// An eleven-year-old boy is denied medicine costing $3,000 per ampoule
Savely Nedvetsky needs medicine costing $3,000 per ampoule
The boy is 11. He has brain cancer. Malignant glioma of the right cerebral hemisphere. Unfortunately, it is inoperable. He is treated with temodal, but the glioma won’t yield to the medicine. He is treated with X-rays, which is a clumsy method: after X-ray therapy at least a tiny part of the tumor remains, quickly growing again. He needs avastin – a medicine the state gives for free to anyone who has breast cancer or rectal cancer. But the Russian Healthcare Ministry regulations do not mention the fact that avastin helps counter glioma, which is why the state doesn’t give Savely avastin.
Savely sits on his bed in the children’s ward of the Radiology Institute and looks sadly through the window. It’s raining. His neighbor Andrei jumps merrily on his bed and says, “Savely, let’s play!”
“No,” Savely replies. “We won’t play.”
“Why?” Andrei is surprised to see a boy who doesn’t want to play. He simply can’t understand this.
“We just won’t.”
“Let’s talk then.”
“No, we won’t talk either.”
“Then let’s…”
“No.”
Andrei’s head is completely bold, and there is a crimson scar at the back of his head, which is good. The scar means that the tumor has been operated on. The bold head means that he has undergone a series of chemotherapy courses. Presumably, the treatment is going on according to the plan.
Savely has no scars on his head, which is bad. It means that the tumor is so located in the brain that neurosurgeons are unable to reach it. Instead of a scarf, Savely has the right half of his head bald. It is because of radiation. Without a scar the bold spot on his head looks gloomy (if only you have ever seen people with cancer, You will understand me).
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“I can’t help talking,” Andrei exclaims jumping on his bed. “My mouth won’t close.”
“We won’t talk,” Savely repeats, and I can see tears in his eyes.
He actually attempted to talk. In summer, when he went to his grandparents’ country-house, near the city of Novokuznetsk. He tried to tell them that he can’t control his left hand. But the adults thought Savely meant he simply couldn’t write with his left hand.
One day the grandfather decided to entertain Savely and seated him on a horizontal bar. Savely took hold of the bar, but it was his right hand only that managed to hold onto the bar, and the left hand let go of it hanging helplessly.
“What’s wrong? Hold onto it with both hands!” the grandfather said.
But Savely could not understand what happened with him.
One day the boy went with his mother from a shop. She gave her son a box of milk and a glass jar. Savely took the plastic bag in his left hand and went on. And as he walked, his hand suddenly loosened, the bag fell down, the milk spilt, and the jar shattered.
Savely couldn’t explain what happened either. And he was sorry to have spilt the milk.
The mother understood there was something wrong with her son. She took him to a doctor. They visited a lot of specialists, in Novokuznetsk, Kemerovo. The boy was examined many times. It was only in Moscow’s Burdenko Institute that they managed to make a final diagnosis. The family had to lay out 70,000 rubles, which is ten monthly salaries of Savely’s mother – the boy didn’t get the quota. Still, I don’t understand how it is possible that there are such quotas on earth, with some children being endowed with the privilege to be treated, and others denied it.
The boy decided not to talk with strangers without any particular need. So he sits with his chin on the metal back of the bed, and looks through the window without uttering a word.
That is why we will speak instead of him. Listen, he really needs avastin. It has been proved that glioma can be cured with avastin. A number of symposiums have been held, with this matter in the spotlight. In the whole world patients with glioma, who were considered incurable and were virtually left to die, have received a chance to be cured. And they return to oncology clinics, where they are given avastin.
The problem is, Russia’s Healthcare and Social Development Ministry is guided by its dozens-year-old regulations when purchasing expensive high-tech medicines. It is so difficult to alter those documents!
No doubt, in a year, or two, or five, the Ministry will review its papers and will start buying avastin not only for women with breast cancer, but also for children with glioma. It surely will.
But Savely has no time.
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1,053,200 rubles needed to rescue Savely Nedvetsky, 11!
According to Boris Kholodov from Moscow’s Radiology and Nuclear Medicine Research Centre, Savely has malignant glioma of the right cerebral hemisphere. “The tumor is diffusive, it is very big, it takes up the entire right hemisphere,” the specialist says. Such tumors can spread widely, and they rarely result in metastases. “Savely has no metastases,” Doctor Kholodov adds. Now the boy has to undergo chemotherapy, and he takes temodal at the same time. “With diffusive tumor, you have hardly any chance to recover with temodal. It does not cure the disease, since it doesn’t block malignant cells’ growth.”
Doctors reckon with avastin. It has been used to treat carcinoma of lung and breast cancer. Three years ago applying it to treat brain tumors gave positive results. According to European research, 29 people, who took this medicine, are alive. Doctor Kholodov thinks that it is too early to make certain conclusions, but so far “avastin is the boy’s only hope”. When taking this medicine, tumor just “melts”. After chemotherapy Savely will have to take avastin and temodal for eight months at least. Doctor Kholodov believes that the tumor will vanish.
The course of avastin costs 1,315,200 rubles. As always, Russian Aid Fund’s permanent partner the Kapital investment group will donate 262,000 rubles (see the details at www.rusfond.ru). So, to rescue Savely, another 1,053,200 is needed.
Dear friends! You can transfer donations to the bank account of Savely’s mother, Olga Nedvetskaya, or our permanent provider ILAN pharmacy. You can find all the details with the fund. It is also possible to pay with credit cards or web-money via the e-payment system (find more information at www.rusfond.ru). We appreciate every ruble you may donate.
Russian Aid Fund experts
Valery Panyushkin, specially for the Russian Aid Fund
All the Article in Russian as of Oct. 13, 2008
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