Adriana, Argentina

Adriana at the workshop

Adriana is 57 and living in Pilar, a city in the province of Buenos Aires, Argentina. She was diagnosed with MS in early 2019 but the withdrawal of her medical insurance and the COVID-19 pandemic meant she had to wait almost two years for treatment to start.

 

I started to feel some minor discomfort in my left leg in April 2018, like a muscle ache. And over the course of the next month I had several falls while walking to work at the leather goods shop I ran with my husband. In June 2018 I began speaking with a traumatologist (orthopaedic surgeon) and other doctors. At first they told me it was fibromyalgia but then I was referred for MRI scans.

Up to this moment I was calm because I thought it was something very simple – I had never had any health problems and I thought it was something temporary. But when they told me ‘you have to go see a neurologist’, that’s when I started to worry. I was diagnosed in January 2019 with primary progressive MS.

When I got my diagnosis it felt like a bucket full of ice cubes had been poured on top of me. I knew about the disease because a business client of mine had MS. She had been walking well, then she began to come with a cane and the last time I saw her she was using a walker. I was very scared. My neurologist immediately put me in contact with Esclerosis Múltiple Argentina (EMA) and from there it was like I could start to have a little peace of mind because from the minute I met them I felt contained in a hug. I felt that I was not alone in this.

It was quite a complicated path as my medical coverage was immediately cancelled. Because I was misdiagnosed with fibromyalgia first, they claimed I was lying. I was left in a situation of being newly diagnosed, scared and with the prospect of not having health coverage. It would be impossible for any Argentinian to pay for their own MS treatment because it is so expensive. EMA, through their lawyers was able to file an appeal and the judge ruled in my favour, confirming the insurer had to reinstate my medical coverage.

It was September 2019 when the judicial process was completed and my treatment was approved, but I did not receive my first infusion until November 2020. The provincial hospitals do not have the infrastructure or the number of professionals that the capital hospitals do and there were no time available for my treatment. Then the pandemic came and we were in quarantine for many months.

When I was diagnosed I was still walking normally but by the time I received my medication I was already walking with a cane. I have now had two infusions of Ocrelizumab but so far I have not felt any improvement. The neurologist explained to me that the medication they gave me is meant to slow the progression of the disease but it can’t reverse how it developed while I was waiting.