Some thoughts on World MS Day

Another World MS Day has come and gone. This year the theme was Access and a lot of initiatives were organized around it. On the official website there were cards and posters we could print or send to thank the people who are breaking down the barriers to access – the people who are making it easier for us to live with MS. The hashtag #StrongerthanMS was the motto, as in together we’re stronger than MS. Social media was flooded with messages. But as I went through hundreds of posts on Facebook and Twitter, I started feeling a bit concerned. Continue reading

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A story of access – or lack thereof

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For the second year in a row, the World MS Day theme is access. Access may mean a lot of different things, and you can read more about it here, but to me, right now, it means access to the right treatment. So I am going to try to keep the long story short. Continue reading

Considerations on leaving

Ever since the global crisis exploded, I’ve been thinking about leaving the country. Unemployment rates, corruption, tax money we don’t really know where is spent, plus the overall pre-war environment Europe is living make me itchy. Of course, leaving ends up being only a fantasy, because realistically speaking, I don’t know what kind of job I would be able to get in a foreign country. Besides, shy as I am, it would take me a long time to build strong connections, and it would get pretty lonely. Adding up to these issues, there’s multiple sclerosis getting in the way. I lack confidence about being able to learn new skills at a new job because my memory and attention are so errant sometimes. I also wonder what kind of therapies and treatments are available in other countries.

I know the European Commission has approved recently at least three new substances that have not yet been made available here. But since the rest of Europe is not on my destination list, let’s move on. On Twitter I see a list of the disease-modifying therapies available in Canada. 10 DMTs. Wow. I only have 6 of them in my country, and being that 3 are interferons, which I can’t take, that leaves me with fewer options. I immediately feel a little sorry for myself.

I shouldn’t have. After all, there’s the rest of the world. My mother was born in Africa, and when she hears me saying I’d like to emigrate she always asks me if I have ever considered Mozambique, her home country. I search online, but can’t find a single reference to multiple sclerosis in Mozambican websites. South Africa is close, but apparently the only DM drug they have is an interferon. I understand multiple sclerosis is more common among Caucasian populations, but still it is not exclusive.

Moving on to Latin America. Brazil. I know they have many cases there because a lot of Brazilians end up in our forums and Facebook groups asking questions. Brazil is growing, there are job opportunities, a rising middle class, the population is young, they drink caipirinhas (alcohol is very important)… but they have only 5 DMTs.

What was I complaining about really?

This year’s World MS Day theme was access. Clearly access to therapies is different depending on where on the globe you are. Something that I know in theory, but that gets even more depressing when I do a little research. Politics and all that. I guess I’d better just wait for the three new drugs that have already been approved by the European Commission to also be approved here. And those are the DM drugs. Let’s not mention symptom management drugs like Fampyra and Sativex. I’m not even asking for those. 

In the end, why would I want to leave? I’m living in one of the few – if not the only – countries where therapies for multiple sclerosis and other diseases are free, whether you’re rich or poor, have insurance or not. They’re the cheapest and least effective therapies. But they’re free.