ALTERNATIVE THERAPIES
Fear of losing sight drives the desperate to Russia
November 30, 2009
Patty Winsa
STAFF REPORTER
What would you do if you had an incurable eye disease that was slowly making you blind?
Like a growing number of GTA residents, would you travel to Russia to get your eyes injected with a substance made from cadaver cartilage, called Alloplant, that a doctor there says can halt the progression of your disease?
That's what Roman Chebotarov has done for four years, after he was diagnosed in his 30s with dry macular degeneration; after he began to lose his night vision and couldn't drive and made the panicked rounds of specialists at Toronto hospitals; and, after he went to San Francisco to seek out an Asian self-healing school.
Now 53, Chebotarov has made the pilgrimage to the Russian Eye and Plastic Surgery Center seven times, even though he says his doctors here don't believe in the treatment.
"I'm losing my vision every day. I have nothing to lose," says Chebotarov, a former mechanical engineer who had to quit his job when his vision began to deteriorate. The North Toronto resident estimates he spends $5,000 in flights, treatment and accommodation each time he goes to Russia.
Over the years, as word spread, his travel companions have grown to include others with the disease: A 70-year-old Thornhill woman who is blind in one eye and losing sight in the other; a 37-year-old New York doctor; and a 23-year-old Mississauga man who lost his sight when optical nerves were damaged during surgery.
All are searching for a cure even though North American doctors have told them there is none.
Optical experts here also question the veracity of the Russian clinic's claims regarding Alloplant.
"Alloplant is totally not documented and it's been around since the '70s," says Dr. Robert Devenyi, ophthalmologist-in-chief for the University Health Network and a retinal specialist at Toronto Western Hospital, one of the largest retinal departments in North America.
"The (medical) world is a very small community. And anything that really works is used throughout the civilized world and documented in peer reviews," he says. "We have meetings all over the world. There's no such thing as one country having this brilliant treatment and no one knowing about it."
Chebotarov says clinic staff has never claimed that the treatment would improve his vision, only that it will stop the slow-progressing disease from getting worse.
The clinic told Pavlo Strashko, the 23-year-old Mississauga man who lost his sight at age 11 when a brain tumour was removed in 1997, that the Alloplant transplants he had in April and injections in the fall would strengthen his optical nerves and prevent them from dying.
Age-related macular degeneration – there is both a wet and a dry variety – is the leading cause of blindness in Canada. The more common dry variety is caused by an accumulation of cellular metabolic waste deposits in the layer of the eye just under the retina. Eventually, the light-sensitive cells in the centre of the retina – called the macula – break down and sufferers lose their central vision.
A recent study suggests eating green leafy vegetables reduces risk, but clinical trials of drugs to treat the dry variety have failed and there is no proven treatment.
According to the Russian eye clinic, Alloplant can cure upwards of 30 diseases.
Invented by the clinic's founder Ernst Muldashev in 1970, the engineered material is said to attract stem cells which transform into other cells, causing tissue to regenerate, the centre's website states. It also says Alloplant can be implanted without rejection, can regenerate tissue and stimulate the growth of blood and lymphatic vessels.
Muldashev made headlines in 2000 when he claimed medical history by performing a combined eye transplant – using the retina and cornea from a corpse – on a 37-year-old woman using Alloplant. Experts quoted at the time called the claims barely credible.
In response to emailed questions from the Star regarding Alloplant, Muldashev said he has visited 53 countries and "during those visits I was also met with distrust and unconcealed rejection" of Alloplant.
Muldashev said more than 1.5 million surgeries have been performed with Alloplant and more than 500 clinics in Russia use his material.
Anis Khusnutdinov, the clinic's director of foreign relations, said in a telephone interview that there are published studies of Alloplant, but they are in Russian.
However, Emily Chew, chief of clinical trials at the U.S. National Institutes of Health eye institute, has never heard of Alloplant.
"We're not aware of it," said Chew, who has worked at the institute for 23 years.
While the science surrounding Alloplant is slim, there is nothing marginal about the clinic.
Located in Ufa, a city of 1.5 million in central Russia, the centre's building is large and modern. According to Khusnutdinov, about 20 surgeons work there.
Since his first visit in 2005, Chebotarov has had a series of "small" surgeries – injections of Alloplant into the back of his eye beneath the retina – and "big" surgeries, where his eye is cut open and the material transplanted. Originally around $1,000 an eye, injections are now charged in euros, a 50 per cent rise. "You come to me a little bit late, but I will try my best to save what you have," Chebotarov says Muldashev told him on his first visit. "I cannot cure this disease. I cannot convert dead cells to live ... my fight will be the ones that are alive or infected," he says he was told.
Chebotarov says doctors at the clinic said his vision improved with the first treatments, but deteriorated in 2007. He decided then that he didn't want further treatment. But he has gone back, despite one of his Toronto specialists saying he was being taken advantage of.
"I went there out of fear ... fear that if I don't go, it will get much worse."
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Toronto Star