Oumaima Benyaich, 36, is from Tetouan, Morocco. She lives with her mother and her 8-year-old daughter and works as an administrative clerk in a hotel. She started getting MS symptoms in 2004 when she was 18 and was diagnosed one year later. Previously she has taken on-label DMTs but was encouraged to switch to rituximab, an off-label drug that is more commonly used to treat cancer, after seeing the results of the research led by Professor Belahsen at Hassan II University Hospital in Fez.
To get diagnosed, I faced many challenges. I visited many doctors including general practitioners and specialist doctors, but this was to no avail. I was under so much psychological pressure because I knew I had a medical condition, but this medical condition was neither visible to the doctors nor to the people around me. I only got my diagnosis after getting eye complications and weakness of my facial muscles.
I had never heard of MS before. I had to search on the internet to learn more about it and understand it more. At the beginning, I think it was normal to have major concerns that had a psychological impact on me, however, this knowledge helped me become stronger and enabled me to face the difficulties that I had ahead of me.
My life did not change much at first. I was still able to walk and I was still enjoying my autonomy. I was able to finish my studies and I managed to get a job. I had my first treatment eight years after the diagnosis. I did not have the means to afford it before and at that time there was no serious or tangible progress of the disease. According to the doctors, this is because I had a benign multiple sclerosis.
When I started working and had healthcare coverage, my doctors insisted that I get treatment, otherwise my MS might progress into a more aggressive form of the disease. I started on interferon-beta, but I learned that there are more effective drugs and I changed to fingolimod. However, my MS progressed rapidly so I changed to rituximab in 2019. My doctor at the time was aware of the latest developments in the healthcare system and issued an urgent letter for me to come and get that treatment in this hospital.
This is the first treatment that has required me to travel long distances. This is because this hospital has expertise in using this treatment for MS patients. This treatment is intended for cancer patients and is only available for MS patients in Fez, Rabat, and Casablanca. We want this drug to be adopted for MS too in order to for it to be more accessible to patients.
We always have hope that things will be better in the future and that one day we will manage to find a final cure for MS. Until that time, we have to follow the latest research. And since the research demonstrated that rituximab has a positive impact on MS disease, I was reassured that it would stabilise the progression of my illness until a cure for MS could be found.
The journey from Tetouan to Fez is a very arduous one. Now that I am in a wheelchair I have no choice but to come by car. On the one hand, the trip can be more comfortable for me in a car but on the other hand it also means that the cost of the trip can be as high as the cost of treatment I pay here. If this treatment was available in my hometown, it would be better.
I cannot say there have been significant improvements in my health but I hope the disease will not become more severe and that my health condition does not deteriorate any further. What helps me endure the pain and hardship of the journey to get my treatment is the knowledge I managed to gain about this disease. I have a firm conviction that I have to wage a war on MS in order to stop its progression.
The main challenge for us in Morocco is a financial challenge. Not only is MS treatment expensive, there are other associated expenses that an MS patient must afford, such as physiotherapy. I, for example, have got to a point where I have to use adult diapers. To be able to leave my house, my mother must accompany me. My mother is also the one who takes care of my daughter but when my mum comes with me on my journey for treatment, I have to leave my daughter with my uncle.
My treatment cost varies but it is often between 6,000 MAD ($550) and 7,000 MAD ($640) and I have four doses a year. 6000 MAD or 7000 MAD is the equivalent of four months of my daughter’s school fees. It is also the equivalent of two months of my own salary and the equivalent of six months of my daily needs, including medicines, diapers, and taxi rides to and from work. In order to be able to afford the cost of this treatment, we are forced to deprive ourselves of our basic daily needs.
There are still efforts that need to be made in the field of disseminating knowledge regarding this disease and in the field of access to affordable treatment. The treatment is now available, but at an exorbitant cost. Some patients have the means and are able to live in peace with this disease, but the overwhelming majority do not have the means.
Thank you to HANASEP for connecting us with Oumaima.