Sanae Hazim, 40, was diagnosed with MS when she was 26 years old. She was single, at the start of her career and had just taken on a mortgage. With the support of her employers, family and a local charity she was able to start treatment on an interferon. However, after 19 months the support ran out and she switched to corticosteroids, a medicine for managing relapses. Now, 14 years on, she is taking the cheapest off-label treatment on the market, azathioprine. Her story is an example of the financial juggling act that many people with MS face.
Can you tell us about your diagnosis?
I was diagnosed in 2008 but in fact I started getting symptoms in 2000. I started to get blurry vision but at that time I was preparing for my diploma and I was working too so I used to start my day at 8:00am and finish at midnight or 1:00am so I did not worry. Many years passed and the symptoms were not present all the time but rather came and went. After seven years I started having a hard time walking and my arm also started feeling heavy. I used to do a lot of sports, so it was very obvious to me that something was wrong. Initially I went to see a rheumatologist, but he referred me to a neurologist.
What was your reaction to your diagnosis?
I was devastated. I saw my whole career diminishing. The financial resources did not exist to support it. Back at that time, I had just bought my house and after paying my mortgage installment I was only left with 400 MAD ($35) or 500 MAD ($45) a month. To even get my diagnosis I had to borrow money from others. I did not have enough money to get treatment. However, the neurologist told me the relapse was mild, but it was going to become more serious. I understood her message, so I tried to start my treatment although I did not have the means to support it.
How were you able to make this happen?
The doctor knew about my financial situation. I had shown her all my paperwork. I even showed her my bank statements and how much I am left with at the end of the month. The doctor wanted to save me. She had MS drugs worth almost 40,000 MAD ($3,650) which had been donated by another patient whose body had rejected the drug and so the doctor passed them on to me. Because of that I was able to start taking an on-label interferon immediately.
What did you do after those ran out?
One of my colleagues at work advised me to seek assistance from a local association she had heard about. This was not a well-known association but one which was privately making donations to people who need them. These people did not give me money, they ordered the interferon for me. Then they gave me the treatment and the invoice. I submitted the invoice to be reimbursed by the health insurance. Once I got reimbursed, I would pay them back and they would order the following dose for me. The treatment cost 12,000 MAD ($1,100) a month and I was reimbursed 7,000 MAD ($640) from the insurance so each month they donated 5,000 MAD ($460). This association supported me for 10 months then they said they had to help other people because this is a chronic disease and they were unable to help for the rest of my life.
So what happened next?
The hotel where I work donated 5,000 MAD ($460) from a hardship fund for workers. Each worker contributes 50 MAD ($4.50) each month so we can help other workers who are in need. I was also borrowing money from the hotel to cover the difference between the treatment cost and what was reimbursed by the insurance. In addition to that, my mother requested assistance from many people in Fez. But soon this was no longer feasible as my salary was not enough to pay the loans back each month, so I had to discontinue taking the interferon.
What happened after you had to stop taking your DMTs?
I started to take corticosteroids, which cost only 1,000 MAD ($90). This was an infusion that I used to take when I felt I was about to get a relapse. I used it because it was affordable, but it is not a real treatment because it just minimises the severity of the relapse. The problem with this treatment is that it has side effects, so I tried not to take it often. My condition improved nevertheless which was mainly because of the healthy diet I was on and thanks to more physical activity.
How long did you stay off DMTs?
For five years. I gave birth to my first child in 2011 and my second in 2013. After I finished breastfeeding the doctor told me that I had to go back to treatment. The doctor said that if I could not afford the expensive drugs I should, at least, be on an off-label azathioprine. This is not very expensive. It used to be in the past, but is not anymore. It is considered to be the cheapest one of all MS medication. I started it in 2014 and I have been using it from that day. I take it three times a day. Imurel (azathioprine) is good for me, and my test results show that my body was fine with it. It costs me 300 MAD ($27.50). I pay it myself then I get reimbursed for 80% of the total cost.
Does this make your treatment affordable now?
Of course, but the problem with MS patients is that we do not only need MS treatment. We also get other side effects. So, if the stomach gets affected, we need a treatment for it. If we get an infection, we need a treatment for that too. These are drugs that must also be paid for and reimbursed at a later date. There is a pharmacy in our neighborhood and the owner is a friend of mine so if I need them she gives me the drugs I need and only gets paid for them after I am reimbursed from the insurance. My salary is not enough to cover all of my treatment, we need the government to provide free treatment.