“Stop Hoarding Our Drugs” – Lupus Patient Cries Out

Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. News broke that chloroquine, which happens to be a very essential drug for people living with Lupus, could be a possible treatment for COVID-19. A lot of Nigerians rushed to pharmacies to get this drug in large quantities, and now the people who need it the most can’t access it. We spoke to Misturah, a Lupus patient living in Lagos, and she shared her fears and what life is looking like now.

What was your reaction when you first heard of the COVID-19 virus in Nigeria?

Fear. I was so scared. And I still am. It felt like my world was coming to an end. Considering that one needed a strong immune system to be able to survive the virus. With lupus, you literally have to live with a compromised immune system. Basically, realizing that I am one of the people who wouldn’t be able to survive the effects of catching it, was not good news to me. It means, where other people have to be 100% careful, I had to be 150% since I have an underlying health condition. It’s a nightmare really because, if I ever felt lupus was a big disadvantage to my life, this situation really proved it. I mean, it was a relief to hear that we dealt with it the last time. Now with the virus coming back, I feel like an assassin has just been sent after me.

When the news on Chloroquine being a possible treatment broke, how did you feel?

As soon as the news broke, I knew it was going to be trouble. Hydroxychloroquine (HCQ) is one of the most important medications for me and other Lupus patients, and it is the less toxic form of chloroquine. I knew there was going to be poor supply, especially because knowing Nigerians, panic buying would be expected and this was going to make the prices of HCQ higher, or even end supply and availability. And that’s what’s happening right now. We can only hope that the pharmacies that have promised to get them for us (lupus patients) will do soon.

What effects did the news and subsequent directive to social distance have in your drugs?

This news has two really serious effects. Supply and price. Normally, a sachet of ten costs ₦1100, and you need at least thirty for a month. Or if you’re like me who has to take two per day, you need 60 for a month that’s six, but now it costs ₦2400. And as soon as you call the pharmacies, they’ll tell you it’s sold out. That’s how bad it is out there. This is a medication that if you don’t take it in two days, you’ll get a flare. And by a flare, I mean your immune system is back at attacking your body. Now, I feel like I might not get my medications and it’s scary.

No one knows how long this will take so we are hoping that we don’t run out of drugs by then. And to be honest, social distancing is best for us as Lupus patients because more than ever, we need to stay away from people so we don’t catch anything. I mean, we are literally one of the most vulnerable. The only fear is how long this will take based on the supply of our meds. Because running out of medications while social distancing is a death sentence on its own. It’s really scary, to be honest.

How are you coping with social distancing?

I miss people. My medical appointment was yesterday, but I couldn’t go because of social distancing, and going to the hospital right now is not an option.

Do you belong to any support groups or organisation and how have they helped you in these recent times?

Yes, I belong to the Labalaba Foundation. The founder has helped us with links to pharmacists. Although we have not been able to get medication, for now, they have all promised to contact us soon. The group also provides funds for people who do not have money to get their drugs. The sisterhood and support have been great too, we feel like we have a pillar of support as we are all in this together. Words of encouragement etc too. The group is a breath of fresh air in the midst of all these.