SALT LAKE COUNTY (ABC4 News) – Midvale resident Natasha Lleras has been through a lot in the last 18 years, living with lupus which impacts her nervous system, blood, and joints. Today, she lives and function like any other young and healthy person, but it took a good fight out of her to get this far after surviving a stroke in 2016.
“The recovery from that was brutal. I didn’t have just the stroke symptoms. I had to relearn how to talk and write. I had to walk with a cane for while. Since the stroke was from a flare, I had swelling in my joints where I couldn’t bend my legs very well. I also had swelling in my hands so I couldn’t hold the cane without excruciating pain,” she said.
Each morning for her now consists of taking more than a dozen different medications, including the life-saving drug hydroxychloroquine.
“This is my only option. I take it for about two to three years and then go off for six months. I do this because it can affect your eyesight. I actually went colorblind after my stroke. But this is the end-all for me,” said Lleras. “Some days if I’m unmedicated, I can’t get out of bed and I have two kids. Luckily, I’ve figured out a way where I can take care of myself, what medications work, what medications don’t.”
But now, she and other lupus patients across the country worry about the drug’s availability and affordability in the future. This came after health experts said President Trump prematurely praised hydroxychloroquine as a possible treatment for COVID-19, calling it a potential “game changer.” New York Governor Andrew Cuomo has also publicly expressed optimism about the medication.
Multiple states are holding clinical trials to test the drug, but no official findings have been made. Dr. Anthony Fauci, the nation’s top infectious disease expert said that since there’s only been anecdotal evidence meant, “you really can’t make a definitive statement about it.”
“Now because of all the excitement about this drug, which has yet to be proven in clinical trials, there is a big-time national shortage. People who need that drug for their autoimmune conditions can’t find it so we have to balance those two things,” said Dr. Jennifer Ashton, Chief Medical Correspondent for ABC News.
“This does happen in our profession when there’s a new indication. It affects the demand. So we see the supply being affected quite frequently. It’s a concern for us, yes. Not just for this medication but for all medications that we continue have an inadequate supply for those already taking the medication,” said Shawn Spriggs, President of the Utah Pharmacy Association.
Lleras said she’s already seeing its impact on a local level.
“My pharmacy normally gives me a 90-day supply, which I was already halfway through. But this time, they only gave me a month’s worth and they said that it’s because they want to make sure they have enough for everyone. That’s been the most frustrating part,” said Lleras. “Before this, I wouldn’t have worried. But the way people have been stockpiling supplies, groceries, and toilet paper, I definitely became concerned.”
She explained other Utahns who depend on the drug for their medical conditions are also concerned for their well-being.
“Everyone is terrified. Luckily, this drug does live in your system for a few weeks. However, stress is one of the biggest triggers for lupus and if you go into a flare due to the stress about getting your drug and then you start coming off of your medication, that could be deadly for some people,” said Lleras. I definitely understand the idea of [Trump] wanting to tell people that there’s something to maybe try and ease some panic. But I do think it was a little bit irresponsible to name the drug.”
Doctors said hydroxychloroquine is also commonly used for patients with rheumatoid arthritis and has been used to treat malaria. The active ingredient can also be found in aquarium cleaner to kill algae. One man in Arizona died earlier this week after trying to self-medicate with the ingredient on his own.
“I would warn them [the public] that this has not been proven to be effective with COVID-19 as of yet. There’s been a lot of anecdotal reports that it has been effective as an antiviral maybe outside the body, but not inside the body for those who currently have or want to prevent COVID,” said Spriggs. “So I would discourage them from trying to secure this medication. I would caution them to not use anything that is not FDA-approved to treat any disease.”
Lleras said luckily, she had already prepared a year’s supply worth of the medication in the case that there would be an availability or affordability issue in the future like now. But she urges the public to allow the FDA to study the drug before trying to take matters into their own hands.
“People are scared right now and I understand. I’m scared too. But people react out of fear, instead of doing their research sometimes,” she said. “What you’re doing is you’re causing panic and you’re causing a lot of pain for the people who do need it. I appreciate those who are taking COVID-19 seriously and staying home. For people like me, if I get the virus, it could kill me.”
The Division of Occupational and Professional Licensing sent out a memo to pharmacies in Utah Thursday, limiting the guidelines of dispensing hydroxychloroquine to COVID-19 patients to protect their supply chain.
“For the past two weeks, it has been on back order. We haven’t been able to secure it. I saw it being released to multiple pharmacy locations this week. We’ve received our first shipment two days ago at the pharmacies I work at. So it will be available. I know there are efforts to ramp up supply,” said Spriggs. “But price may be an issue because when demand goes up, cost also usually goes up.”
A vaccine to treat COVID-19 is estimated to be at least a year away, and no drug has been approved to treat the virus yet. But while the drug trials begin, experts still point to self-quarantining as the most effective way to prevent the spread of the novel coronavirus.