[QODLink]
Al Jazeera Correspondent

'Pharmaceuticals not people are the priority'

Artyom's MS medication is not covered by the public health system in Russia, and he cannot afford to pay for it himself.

Last updated: 15 Dec 2013 10:31
Email Article
Print Article
Share article
Send Feedback
Artyom is unemployed but because of his MS receives US$200 a month in disability allowance from the Russian government [Al Jazeera]

It took more than six months to get my diagnosis. I had numbness all the way up my body to my chest, and at first the doctor thought I had a compressed spine fracture. The doctor said it was the result of my accordion playing – the wrong sitting position, holding a heavy instrument for long periods of time. MS was last in the list of possible causes of my symptoms.

I was finally diagnosed with relapsing-remitting MS in 2001 at the St Petersburg State Medical University.

MS causes my legs and body to be numb, and my left leg and arm are particularly weak. My left leg sometimes can’t feel water, even hot or cold; I get spasms and it is permanently fatigued.

MS & Me - Extra

The most important consequence is lack of mobility, and then an inability to find work. And now I can’t get the medicine I used to.

The Russian ministry of health wants to support domestic medicine manufacturing, so it has replaced betaferone with a substitute, called ronbetal. Ronbetal was registered without being approved by the State Scientific Research Institute of Standardization and Control of Medical Biological Medicine. This is the national authority that controls medical immunobiological drugs. Ronbetal is much cheaper, but there are a huge amount of side effects. People first refused this medicine, but now it is the only way to get ‘interferon beta 1b’ in Russia for free.

Corruption in Russia is a big issue these days, and it is an issue in the health system too. I suspect that the paperwork is manipulated so administrators can steal money from healthcare. Money – and the corporate interests of Russian pharmaceuticals – are the priority, not people.

The public health system provides only the minimum and low quality healthcare, in defiance of the Russian constitution where it says that medical care is free. Because I refuse ronbetal, I am not taking any medical treatment. Swimming, physical training, mind and mental control, cognition: that’s it.

I live alone, and so far I don’t have any help at home. There is no government support for this. I will study until the end of my days, but I have no work. But because of my disability status I get $200 a month from the government.

As an active person living with MS, I was asked to be the chairman of the Leningrad regional Russian Multiple Sclerosis Society. The society is advocating to the government for free treatment for people with MS, as a matter of federal law.

For others living with MS, I would like to say "never give up".

 
Al Jazeera Correspondent can be seen each week at the following times GMT: Thursday: 2000; Friday: 1200; Saturday: 0100; Sunday: 0600; Monday: 2000; Tuesday: 1130; Wednesday: 0100; Thursday: 0600.

Watch more Al Jazeera Correspondent 

615

Source:
Al Jazeera
Email Article
Print Article
Share article
Send Feedback
Topics in this article
Country
Organisation
Featured on Al Jazeera
UNHCR says hundreds of people trapped in Yaloke town risk death if they are not evacuated to safety urgently.
'Justice for All' demonstrations swell across the US over the deaths of African Americans in police encounters.
Six former Guantanamo detainees are now free in Uruguay with some hailing the decision to grant them asylum.
Disproportionately high number of Aboriginal people in prison highlights inequality and marginalisation, critics say.
Featured
Long-standing dispute over Christian use of the word 'Allah' raises concerns about a very un-Merry Christmas.
The threat posed by ISIL has prompted thousands of young Kurds to join the PKK.
Baja California - with its own grim history of disappeared people - finds a voice in the fight against violence.
Russian feminist rockers fight system holding 700,000 - the world's largest per capita prison population after the US.
Weeks of growing protests against Muslims continue in Dresden with 15,000 hitting the streets last Monday.
join our mailing list