This is why we can’t have nice things.
Earlier this month, Donald Trump boasted about the U.S. federal government obtaining “about 29 million doses” of an antiviral medication called hydroxychloroquine — used to treat malaria and autoimmune disorders, such as rheumatoid arthritis and lupus — as a possible treatment approach for COVID-19.
Now, Trump has admitted to personally taking hydroxychloroquine against the advice of the Food and Drug Administration (FDA) and medical professionals.
For the people who know the risks of these medications and rely on antivirals to manage their autoimmune disorders, this news came with heart-sinking dread and urgent questions:
“Should we start to worry? Should we start to ration our antiviral doses? Will there be a shortage? How can I access my antiviral medications?”
And maybe the most frightening, uncertain question:
Historically, antivirals are medications that fight viruses, like the flu. The Centers for Disease Control and Prevention (CDC) explains that these medications are
People who use antiviral medications for things like influenza or other viral infections usually have shorter, less intense, and more manageable symptoms.
But not everybody can and should take antiviral medications. In fact, antiviral medications aren’t available over the counter. Only medical professionals can prescribe them.
The CDC also says that people who are in high-risk health groups should consider antiviral treatment over the “typically” healthy person.
High-risk people include those who have:
- autoimmune disorders
- heart conditions
- other chronic conditions
These are the very people who need antiviral medications the most, and the people who are also highly susceptible to severe COVID-19.
Antiviral medications can be absolutely essential in providing care for people who have chronic conditions, such as:
- lupus (DLE and SLE)
- rheumatoid arthritis
Well, this is exactly what researchers and medical professionals are trying to figure out.
As of April 24, 2020, the FDA issued a statement to say that the use of the antiviral medications hydroxychloroquine and chloroquine are
On March 28, 2020 the FDA gave an Emergency Use Authorization (EUA) for hydroxychloroquine and chloroquine for the treatment of COVID-19, but they retracted this authorization on June 15, 2020. Based on a review of the latest research, the FDA determined that these drugs are not likely to be an effective treatment for COVID-19 and that the risks of using them for this purpose might outweigh any benefits.
Clinical trials are in full swing in a hope to find which (if any) antiviral medications can directly combat the new coronavirus.
The side effects of taking these medications, though, can be quite dangerous and even deadly.
And this is exactly what antiviral users are trying to tell people.
There are serious risks associated with taking antivirals. People with chronic conditions are all too aware of the risks. They have to negotiate the possibility of having negative side effects with the reality that the antiviral medications are keeping them alive.
For hydroxychloroquine alone, the
- hair loss
- muscle weakness
- serious heart complications
The FDA is urging medical professionals to take all of this into consideration before making the decision to prescribe antivirals in nonemergency cases.
Additionally, the two major antiviral medications that the White House endorsed for household use — hydroxychloroquine and chloroquine —have previously been in short supply.
Right now, research on how effective antiviral medications are against COVID-19 symptoms does not show promising results.
However, the government has still been pushing the antiviral medication remdesivir into hospitals to treat COVID-19 patients. As a result, the demand for this medication and other antivirals has been high.
High demand for medications like these comes with price jumps, shortages, and a general lack of treatment for antiviral users.
Not only are there hospitals and COVID-19 patients who aren’t getting this touted treatment, but it also means that patients who need these medications for chronic health conditions are facing even more of a risk of shortages.
Further, antiviral users, especially in Black communities and other communities of color across America, have a significant lack of access to the antiviral medications they need.
They’re being gaslit, denied treatment, and blacklisted from specialists. They’re appealing and reappealing, then reappealing again.
And even if these communities can find a doctor to prescribe the antivirals they need, they may need to be prepared to pay a price hike for the proper dosage.
Antiviral users in these communities and throughout the country are already starting to ration their doses, even at the risk of experiencing more pain, more health struggles, more long-term harm.
In turn, their chronic conditions have and will continue to flare unless they can get the proper antiviral treatment. This is a matter of life or death for many.
If you’re an antiviral user, you already know everything there is to know about these medications: the risks, the ways they affect your body, and the reasons why you need to take them to manage symptoms and prevent further physical damage.
The harder question to answer is how you’re supposed to ensure that you can get treatment during times of shortages and price jumps.
Here are five tips to consider.
1. Try to find alternative treatments to take the ‘edge’ off your pain
If you’re unable to access any antiviral treatment for your chronic condition, you might need to turn to temporary options to help protect your body and relieve some of your pain.
Obviously, many of these alternative treatments aren’t as effective for treating your chronic condition. If you have a trusted healthcare provider, they might be able to prescribe similar treatments to fill in the gaps between your antiviral doses.
For example, the National Resource Center on Lupus suggests using NSAIDs or anti-inflammatories as well as prescribed steroids and immunosuppressant drugs.
This suggestion might feel extremely frustrating; you’ve already tried all of these alternative treatments. They don’t work. That’s why you’re taking antivirals to begin with.
We hear you. But taking the “edge” off your pain, or slowing the damage of your autoimmune disorder, might be a temporary option that can keep you holding on until you can get the real treatment you need.
2. Keep advocating for yourself
Dig your nails in, hold your ground, and find that fire within you to keep pushing for your right to receive treatment.
This might mean “doctor hopping”: finding that right doctor, the intelligent specialist, who will actually hear your concerns and work with you.
Sometimes the hardest part of advocacy is when you have to push through the red tape and ignorance to find better resources.
Remember: Your health is the priority here.
The risk of taking antivirals makes far more sense to people who have already adjusted to the effects of the drugs and who need them long term for chronic conditions.
After all, more research is still needed to know how antiviral medications can offer relief and healing to those affected by COVID-19.
And one step further than that, your advocacy is what’s needed to create solutions to keep people who are already on antivirals healthy, safe, and stocked.
If you’re stuck on how to advocate for yourself more effectively, this guide is a great place to start.
3. Celebrate your strength
For disabled people, those with autoimmune disorders, and any antiviral users, having a lack of control over this situation and your own physical health is extremely overwhelming.
Antiviral shortages might have a substantial impact on your physical and emotional health. Feeling more pain, depending on others, and needing to ask for help can be really challenging situations that are only exacerbated by the pandemic.
But it’s important to take the time to recognize what you’re able to control. It’s important to celebrate all of your strengths.
Maybe you were able to make another phone call to your doctor’s office today to ask for an update on your antiviral prescription.
Maybe you were able to ask your partner to take over your typical daily duties.
Maybe you were able to make a list of things you can do safely and virtually to protest the antiviral shortage. Maybe you were even able to send out that fiery tweet and get some support from others in the same position as you.
No matter what you were able to control or accomplish today, you should be proud of your strength.
Who else can trudge through pain while their survival is being threatened? Not many people.
Keep this in mind: You made it through this breath. You made it through this sentence. And you’ll make it through the next step.
4. Lean on your community
The emotional trauma and fatigue from having to constantly prove that you do need these medications and your life does matter is intense. This can have a significant detrimental effect on your mental health.
Right now, it’s incredibly important to make sure that you take care of your emotional well-being — especially if you feel a lack of control over your physical health.
Teletherapy services, online support groups, and even just heading over to social media pages with other antiviral users to express your overwhelming emotions can help you stay recharged and ready for the next course of action.
Further, if you can connect with people locally, you may be able to find recommendations for more sympathetic clinicians, alternative treatments, and other “hacks” that can help you manage in the interim.
5. Speak your truths
Currently, the hashtag #WithoutMyHCQ is raising noise on Twitter. Thousands of antiviral users are using this platform to express the painful, pricey, and deadly consequences of not having access to hydroxychloroquine.
Maybe it doesn’t feel big right now, but this is action.
You are making waves. You are bringing awareness and truth to your realities that many people have the privilege to ignore.
Take action in whatever way you can.
Use every possible resource you have to advocate for guaranteed access to medications that are proven to help you survive but aren’t yet proven to help with COVID-19 symptoms — and ask your loved ones and allies to do the same.
Call your local representatives. Organize (safely and virtually) with other antiviral users. Scream from your window. Make noise.
It shouldn’t have to be your responsibility to fight for the treatment you require.
But speaking up and using your voice might be exactly what’s needed to remind White House officials, doctors, and people trying to buy antiviral medications that this is your life, your body, in their hands.
You are the expert here. Your expertise, your experience, is the truth all Americans need to listen to right now for their own survival, and for yours.
Aryanna Falkner is a disabled writer from Buffalo, New York. She’s an MFA candidate in fiction at Bowling Green State University in Ohio, where she lives with her fiancé and their fluffy black cat. Her writing has appeared or is forthcoming in Blanket Sea and Tule Review. Find her and pictures of her cat on Twitter.