'These aren't Tic Tacs': Author Eden Robinson on her experience with hydroxychloroquine

Transcript

When U.S. President Donald Trump urged medical professionals to take a malaria medication to protect themselves from COVID-19, he asked: "What do you have to lose?"

Eden Robinson knows the answer to that question all too well. 

The Canadian author took hydroxychloroquine for eight months to manage pain from her rheumatoid arthritis, and experienced some of the more severe side effects associated with the drug, including vision loss. She wrote about her experience for the Globe and Mail. 

Hydroxychloroquine is used to treat malaria, as well as inflammatory disorders such as rheumatoid arthritis and lupus. There is no evidence it can protect people from contracting COVID-19, the disease caused by the coronavirus. 

The jury is still out on whether it can be an effective treatment for COVID-19. To test that idea further, Canada's McGill University is conducting a randomized trial that is expected to include as many as 1,500 people. Another 1,500 people are enrolled in a similar study in the United States. 

Public health officials — including Canada's chief public health officer Dr. Theresa Tam — have repeatedly warned that hydroxychloroquine can be extremely dangerous, with potential side effects that include irregular heartbeat, low blood sugar, mood changes and psychosis.

Robinson spoke to As It Happens host Carol Off about her experience with the drug. Here is part of their conversation.   

When you hear Donald Trump saying "What do you have to lose?" and say look at the benefits of hydroxychloroquine, what do you say to that? What do you want to tell Donald Trump?

You know when you have the commercial for drugs and at first they give you all the wonderful things they can do, and then they have that very soothing voice that comes afterwards and tells you all the possible side effects? I think we're missing that soothing voice.

Speaking strictly from my own experience, after month five, I started seeing floaters and the floaters just kept increasing.  And then I started getting eye pain. And if you've ever had a migraine … if you can imagine your migraines in your eye, that was my experience with hydroxychloroquine.

If you take this medication without being medically supervised, you know, you could win the worst lottery ever if you are one of the rare people that have retinal detachment as your side effect.

If you are taking it just because you, like, bought it off the internet, you thought Donald Trump made a point, if you start seeing halos around everything that you're looking at, you are in danger of losing your eyesight. 

This is, of course, not reversible. This is a permanent damage you're talking about.

This is permanent damage.

When you are given Plaquenil [a brand name for hydroxychloroquine] from a doctor or a rheumatologist, there's a protocol that you have to follow, and you have to get a baseline eye exam from an ophthalmologist. And you go back every six months so that they can monitor if there's any buildup in your eye.

Towards the end of the eight months I was on Plaquenil, I was seeing so many floaters, it was like a snow globe. So it made it really hard to drive, really hard to read, really hard to do anything that required near sight.

We know that because of what Donald Trump's had to say, it has given a tremendous bump to sales of hydroxychloroquine.... So what do you say to those people who are now not just thinking they can treat COVID-19, but lots of people trying to get ahold of the drug because they believe what the president said that it can prevent them from getting it?

If you're hoarding this drug to prevent or treat COVID-19, you know, there's no real studies yet to say that it can do this and you are risking your own health to take this. 

And at the same time, you are taking drugs away from people who actually need it. You're taking drugs away from a very vulnerable population. 

People with rheumatoid arthritis and people with lupus who do well on this drug need to take it regularly. If you don't take your arthritis medication regularly, you risk capping an arthritic flare. When you have a flare, your symptoms come back and sometimes they come roaring back.

If you are taking this for lupus, that's even more critical. Lupus is an autoimmune disorder that attacks your body the same way that arthritis does. But if it starts attacking one of your organs because you can't take your medication regularly, then that puts you at risk for organ failure. 

And if you have one of your organs failing during a pandemic when your immune system is compromised, you know, the results are pretty grim.

For yourself, why did you feel it was necessary to put this message out?

When Donald Trump was talking … I just wanted to be the little voice that comes after on the commercial that tells you these are the possible side effects — just to raise people's awareness that, you know, these aren't Tic Tacs. These have potentially life-altering side effects.

Written by Sheena Goodyear with files from Amina Zafar and CBC News. Interview produced by Chloe Shantz-Hilkes. Q&A has been edited for length and clarity.