Stop hoarding Hydroxychloroquine

As COVID-19 continues to terrorize the world’s population, it can be easy to grasp at any hint of positive news, any tiny glimmer of hope. With scientists and medical professionals around the world working around the clock to unlock the secrets of the disease and find a vaccine or cure, information about their incremental successes and progress can easily be blown out of proportion in a manner that may be dangerous. Premature and incomplete information that is spread without qualification or an adequate understanding of the consequences can prove to be as life threatening as COVID-19 itself.

The most recent incident of this hits very close to home for me: on March 21, the President of the United States of America, Donald Trump sent a message on Twitter praising two drugs as being “game changers” in the context of the fight against COVID-19. One of the drugs he mentioned is Hydroxychloroquine (HCQ), a medicine that most people would not have heard of prior to Donald Trump’s tweet. However, since that message HCQ has come into very high demand, to the point that suppliers have been reporting shortages. In the last two weeks numerous persons with lupus, rheumatoid arthritis, COVID-19, and even those who are healthy have asked for my help to find HCQ, as the same has become out of stock in drugstores nationwide.

There are several reasons why this is incredibly dangerous. First, while studies do exist with regard to the potential use against COVID-19 of HCQ, it is not yet of a scale large enough that any serious weight can be put behind claims that it is a viable cure for COVID-19 (and there are some concerns regarding the methodology adopted). Both officials of the FDA in the United States as well as Dr. Anthony Fauci (a top immunologist involved in the US response to the pandemic) have stressed the need for large-scale clinical trials before HCQ can be approved for general use in treating COVID-19 patients.

Second, HCQ may cause serious side effects and complications, especially when taken in conjunction with other medications. The Philippine FDA has warned that use of HCQ, may lead to blurring of vision, color blindness, muscle weakness and spasms, psychotic disorders, and the weakening of the heart. Trump’s message recommended taking HCQ and another drug together but the US Centers for Disease Control and Prevention warn that the combination can disrupt the heart’s electrical activity. Nigeria has already reported harmful drug overdoses linked to President Trump’s message regarding these drugs as potential cures. 

Third, while HCQ is an untested and dangerous potential remedy for COVID-19, it is an essential and proven necessity for people with lupus and rheumatoid arthritis. With President Trump’s endorsement of HCQ there have been reports of people hoarding and stockpiling these medicines around the world, and this has begun to make it difficult, almost impossible, for lupus patients to acquire a medicine that is essential to their quality of life and their very lives. 

This is not a hypothetical future scenario – it is happening right now. Around two weeks ago someone with lupus asked for my help to find HCQ because she could not find any. On the day that I write this, I’ve just found out that she passed away two days ago. 

I’ve made no secret of the fact that I have lupus, and my work with the Hope For Lupus Foundation is one of the driving passions of my life. So I believe I am uniquely suited to ask everyone to please, please do not hoard HCQ. 

I have been taking HCQ for almost 13 years. Prior to my diagnosis, moving my fingers, knees, elbows, and even my jaw and shoulders would cause acute pain. I stayed in bed most of the time, and even that was painful. Because of this, I needed help with my daily activities, from eating to bathing. But when I was diagnosed and medicine targeted for lupus, such as HCQ, was prescribed, my pain was managed and I was able to return to a substantially normal life. Since then, HCQ continues to be my maintenance medicine and that means that I depend on it, just like millions of others around the world who have lupus and other rheumatic diseases. 

Whether you are an individual or an entity such as a hospital, I implore you to avoid stockpiling HCQ “just in case”. Your “just in case” may never arrive, but you will be endangering lupus patients who need HCQ today, and every day – perhaps now more than ever, as COVID-19 seems to be much more dangerous to those with pre-existing conditions and weakened immune systems, like those with lupus. 

The fear and anxiety caused by the COVID-19 pandemic is something that we can all understand, because it is something that we all feel. But the appearance of this dreaded new disease did not cause other illnesses to disappear, or to become any less life threatening. We must deal with the current pandemic without making life even more difficult for those who are suffering from lupus and other health conditions, precisely because they are also some of the most vulnerable to COVID-19. And if there’s one thing we’ve learned about this virus, it’s that protecting the most vulnerable amongst us is equivalent to protecting us all.

To our fellow lupus warriors who are looking for Hydroxychloroquine: please send us a message at [email protected] or through our Facebook account @hopeforlupusph – with your dosage and other details. We will do our best to help you find some as we are in contact with drugstores. The members of our foundation also help each other by updating our Facebook page with the locations where HCQ is found. This is an example of the mindset that will help us get through this most difficult of times, one which need not be made even more difficult by the lack of essential medication.

What we need now are kind hearts, critical minds, and generous souls – not selfishness nor greed nor gullibility. If and when a medicine is found, it will be embraced by proper authorities and experts such as the World Health Organization and the Department of Health. The hope for HCQ as a cure for COVID is quite tenuous at the moment, but the danger to lupus patients posed by a scarcity of HCQ is very, very real. Stop hoarding, save lives.