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New Group To Fight For Cancer Patients
A new cancer patient advocacy group that held its founding conference in St. Petersburg last month has launched a campaign against the restricted access to effective and innovative cancer treatment available in Russia.
The Movement Against Cancer “was created with the aim of defending patients’ rights to access anti-cancer treatments, to campaign for an increase in the state budget covering the purchase of medicines, equipment and organization of public screenings,” said Anna Larionova, a cancer patient and the leader of the St. Petersburg branch of the organization.
Doctors across the country welcomed the patients’ initiative.
“Similar movements have proved effective in Europe and the U.S.A.,” said Vladimir Semiglazov, director of the St. Petersburg Oncology Institute.
Earlier this year a number of Russia’s top oncologists admitted at a conference in Moscow that Russia’s current healthcare system cannot cope with the scale of what they see as a cancer epidemic in the country.
Each year in Russia, 300,000 people die of cancer. Around 2.5 million Russians suffer from cancer, and more than 450,000 new cases are registered annually. The average age of cancer patients in Russia is 63.3 years old for men and 62.9 for women.
Mikhail Davydov, the president of the Russian Academy of Sciences, called for a special service aimed at combating cancer to be created that would be directly responsible to the government and parliament.
Both Russian and international pressure groups dealing with the rights of cancer patients stress that not only access to medicines is often restricted for sufferers but they remain in the dark about the range of treatment methods and medicines.
The movement is collecting appeals from patients that are being denied adequate treatment.
In the meantime many pressure groups have criticized the government for making careless decisions in the field of healthcare.
In theory, drugs for certain illnesses — including some forms of cancer — are free with a prescription. According to government estimates, about 5 million people can technically benefit from the free drug system. But the government divides cancer patients into categories eligible and not eligible for the free prescriptions, depending on doctors’ estimates of their condition. And even with a free prescription in hand, many patients are unable to get the medicines because pharmacies do not have the drugs.
The government does not pay the suppliers on time, which creates shortages of vital medicines.
Pressure groups also accuse government officials of irresponsibility when signing contracts to import medicines. In October 2007, Russia replaced a Swiss-made kidney medicine Mycophenolate mofetil with a cheap generic alternative from India.
Irina Khristova, the chairwoman of the The Right To Live non-governmental organization that unites kidney patients on a nationwide level, said her organization this year polled 350 kidney specialists and transplant surgeons worldwide about the drug. Only one specialist said he was familiar with it.
“Our organization sent information requests about the effects of the medicine to hundreds of clinics in the EU, the U.S., Canada and the Commonwealth of Independent States [of former Soviet nations] and none of them neither knows or uses the generic drug,” Khristova said. “Why is it being tested on the Russian patients? Why has the efficient Swiss medicine been replaced? Wrong decisions made within government may claim many human lives.”
“Why on earth do people have to risk or even pay with their lives to prove to the Health Ministry that the officials made a mistake,” Khristova said. “Even from a purely economic point of view it is cheaper for the government to buy the medicines that have already proved effective than to take the risk of a patient losing a kidney after inefficient treatment and then requiring dialysis.”
For cancer sufferers the market price of drugs can be far greater and well beyond the reach of all but the wealthy. A course of the anti-cancer drug Avastin can cost as much as $10,000.
The late Russian writer Igor Alexeyev, a resident of the southwestern city of Saratov who suffered from advanced intestinal cancer and died in March, chronicled his illness in a weekly blog. He described insomnia and intense pain as he endured endless journeys along rutted provincial roads trying to get treatment and medicines.
Many readers of the blog responded by sending Alexeyev donations, which he used to pay for his Avastin courses. The drug had been prescribed to him but it was never available at pharmacies. On one occasion Alexeyev reported his amazement at actually being able to get the medicine from his local pharmacy.