“It was last Wednesday, Wednesday 25 March. I had never before felt concerned about Plaquenil because it is an easily available drug. When I read that, from March 17-18th, the Italian hospitals were experimenting with it for covid-19, I had a small concern, but I felt safe.
I never thought that the Italian health care system would not protect lupus patients. Plaquenil, taken at high dosage (from 400 to 600 mg per day) after 4/6 months of therapy creates a suppressive immunumodulation, that is, it acts as moderate chemotherapy.
I called my usual pharmacy and they told me that for a few days the drug was not available, because more people had "attacked" the Milan pharmacies by buying hydroxychloroquine and the plaquenil. Distributors no longer supplied them, but only the hospitals.
And so I called almost 20 other pharmacies in Milano and they all responded in the same way. I felt like crying. I felt alone, abandoned by the health system, panicked because I can't be without therapy.
But, especially after a first moment of despair, I felt pissed, this sense of survival took over (because keeping the auto-antibodies of lupus inactive is survival) and I had to find my medicine in any way.
I called and wrote to all public health references but no one - still today - answered me. Government health representatives are undoubtedly very busy now, but they find time only to update their profile on social media but they don’t find it to answer to a citizen in difficulty.
The thought that most frightened me was a possible worsening of my health conditions without hydroxychloroquine. The possibility of having to go to a hospital at this time terrified me: first because people with autoimmune diseases are at risk and must not leave the house, even more so than the others, but above all, it terrified me to have to burden and entrust myself to the Italian health care on knees - especially in Lombardy. As usual we citizens had to think independently about our safeguard and only an appeal on Facebook helped me through the solidarity of other citizens to find a solution”
This is a text message I received from my dear friend, who lives in Milano, the hotspot of this war. She has lupus, and her recent experience was nothing short of terrifying. Aside from the fact that she already lives a very limiting lifestyle due to the implications of this disease, she now has to deal with this frightening battle of getting the medication that is crucial to her survival. With God by her side, as she frantically called pharmacies all over the city, she was lucky enough to find three packages available. Her father scrambled the infectious city to retrieve the medicine before anyone else swept them up.
Lupus is a systemic autoimmune disease that occurs when one’s immune system attacks its own tissues and organs. Inflammation can affect your joints, skin, kidneys, blood cells, brain, heart and lungs. Hydroxychloroquine helps prevent this inflammation. More specifically, it helps stop an individual’s immune system from making too many antibodies. These antibodies, if peaked to high numbers, will cause the immune system to start attacking the body’s organs.
Plaquénil, the commercial name for hydroxychloroquine, is the main and most crucial medication used in the treatment of individuals with lupus. Hydroxychloroquine is one of the only FDA-approved drugs for lupus. Patients who take this drug are generally less likely to develop kidney disease, early heart disease, diabetes, and other problematic implications. It allows them to lead a longer life.
Plaquénil is a vital component in the lives of over 5 million individuals around the world. And now, with the irresponsible and rash distribution that has occurred up until, those 5 million plus individuals are struggling to find the very thing that is helping them stay alive. Does this sound fair? They weren’t given even the slight bit of warning, let alone choice, of whether this was acceptable to them. They were just left at the docks watching the ship float away.
Up until about three days ago, when it was officially declared that hydroxychloroquine does, in fact, help treat Covid-19 patients, it was an unproven “cure.” All during this time of uncertainty, stockpiles of hydroxychloroquine around the world were depleting, and depleting fast.
Think about this…
The medicine WASN’T EVEN PROVEN TO HELP THE TREATMENT of covid-19 patients, and yet, people were deprived of their most critical medication. Imagine if it was you. How would you feel? What would you do?
If hydroxychloroquine is providing treatment for the most severe symptoms and cases of Covid-19, that is something to be celebrated. However, I think what can easily be overlooked are the consequences for those who have relied on the drug to treat the symptoms of lupus. I think this heartbreaking story sheds light on a major concern. While it would be a breakthrough if scientists and medical experts discover that drugs already in existence could be used to treat covid-19 patients, I hope that patients already relying on those drugs for other diseases are kept in mind.
Trials using hydroxychloroquine to treat covid-19 patients were executed; however, they did not definitively prove that the medicine worked. It seemed as though people were, out of desperation and exhaustion, jumping to conclusions before conducting thorough trials. And, even more, countries were allowing, and even recommending, their doctors to prescribe the medication. Pharmacies were even selling the medication without a prescription.
Shortages in the supply of the drug were reported around the world in the last few weeks, including the UK, Thailand and France. India, one of the major manufacturers of the raw ingredient used in the drug, has banned any and all of its exports of the chemical in order to protect her own supply. Indian officials have also strongly recommended that all its healthcare workers take the drug as a preventative measure in protecting them from contracting the virus.
As supply continues to dwindle, pharmacies are left without communication or knowledge about when they will be restocked. Prior to the hysteria, the Executive Director of the Lupus Foundation in Southern California, Elizabeth Savage, made the following statement:
"Right now, today we can't say yes there is a shortage, I don't believe that's true. But what I am afraid of is it will be very quick, because if people are hoarding the drug it will turn out to be like the toilet paper."
If you’ve made it this far, you may be asking yourself, “Isn’t there any other medication that lupus patients can take?” The answer is ‘not really”. There is no other drug out there that has proven effective in the “more good than harm” treatment of lupus. Those that others may claim do exist have harmful and/or toxic side effects.
Again, I circle back to my concern about the unintended consequences of using drugs already available. This disease has been vicious, and will continue to be vicious. It has such far-reaching effects on so many aspects. Does the knowledge that hydroxychloroquine can be used in the treatment of Covid-19 mean that the world’s lupus patients will lose the treatment required for their survival? How can we, as a global community, minimize the number of victims in this war?