Fourteen years ago, 18-year-old Abdelhakim had moved away from the small mountain village where he grew up and was living in Fez and working as a tailor. He had his own money and was sending contributions home to his parents. He was a talented footballer in his spare time. Life was just opening up. Now, he is back living with his parents, many hours’ journey away from the treatment he needs and he lives in frustration at no longer being able to thread a needle.
Abdelhakim’s journey to diagnosis was winding. He wasn’t initially worried about his symptoms: ‘At first I thought I had numbing due to the cold weather. When it got worse, I went to see a Chinese lady and I tried acupuncture, but my condition grew worse day after day.’
Within four to five months he was experiencing lack of balance, trembling when he walked and had a heaviness in his legs that made him afraid he would fall over. His father, believing it might be witchcraft, took him to the traditional healer. It was the healer who told him he must visit the doctor.
From then he had a succession of appointments at private clinics, undergoing tests and MRI scans and eventually being diagnosed with MS. Having never heard of MS, he assumed he would take some medication and get better:
‘After I learned I had the disease, I started following the treatment. At that time I used to think that I will get over it and get back to my normal life. It was only when I was 23 or 24 that I started to realise I have a chronic disease and I am not getting better.’
The first medication Abdelhakim received was infusions of a corticosteroid that is used to manage the impact of relapses. He received this treatment before RAMED, the subsidised healthcare system for the country’s poorest and most vulnerable citizens, was established and it had a big impact on the family’s finances.
‘On one occasion I had to go to the clinic for two to three hours every day for five days for infusions and I had to pay a total of 2,500 MAD ($230). My father was forced to sell his piece of land due to the high cost of all my medical procedures.’
Alongside the corticosteroid he was also taking an oral off-label azathioprine. However, after many years on these medications and with his MS progressing rapidly he became disillusioned and decided to give up the tablets and the infusions:
‘I was in denial and I said to myself ‘I will no longer go to any doctor anymore and whatever happens, happens.’
Once again, his father by his side, Abdelhakim was convinced to return to the doctors. This time he registered with the Hassan II Hospital in Fez, where he was treated by Professor Belahsen, who – through the now-established RAMED scheme – prescribed an off-label retuximab. Designed as a cancer treatment, this affordable drug is often used to treat MS patients and research has shown it to be effective treatment for the condition.
While his newfound commitment to this treatment is positive, geography presents Abdelhakim with more challenges to accessing his treatment. The journey between Fez and his village is more than 100 kilometres and a substantial part of it is up and down narrow unsurfaced mountain roads. “Living in agony,” is how he describes getting to and from Fez for his appointments:
‘Some people in the village own a car and they use these cars to transport the locals from the village to weekly markets in town. Sometimes, they arrange trips to Fez too. Every time I have to go to the hospital I must contact them so I can book a seat in their car.’
The price of a round trip is 150 MAD ($14) but frequently he has to make that journey twice. Before each infusion he has to have a series of tests. Often these test results are delayed and he misses his infusion appointment meaning he has to return home only to repeat the journey the following week. Worse still are the times when he is unable to book a car to Fez and has to go by foot and by public transport:
‘If I am not able to find a car travelling from the village to Fez, I have to walk all the way to the town of Galaz, which takes some hours, from where there is nothing you can do apart from take the coach. It is frustrating to me that I need to go all the way to Fez in order to get my treatment, while I live here in the village. I wish I was still living in the city, but I don’t have the means to afford living there.’
His lack of earning potential is what affects him the most:
‘I am alive but I am not living. It’s as if I do not exist in this world. I am incapable of doing anything. I spend most of the day watching TV and I play a bit with my kids too. We do not have running water in the house, so I sometimes go and get water for the house. That’s it. The hardest thing for me is that I have nothing. I was working when I learned about my disease but my illness became so bad that I was not even able to do the smallest tasks, such as threading a needle. I still remember every tiny detail about my job. I still know how a woman’s garment should be tailored, but I cannot thread a needle.’
Thank you to HANASEP for connecting us with Abdelhakim.