Autoimmune disease drug in short supply because of its promise for treating COVID-19 | COMMENTARY
By Ellen Ginsberg Simon
For The Baltimore Sun|
Mar 30, 2020 at 6:00 AM
As we begin the third week of our dystopian lives, many people are filled with the tenuous hope that a 60-year-old antimalarial drug — hydroxychloroquine — may hold the answer to treating or at least decreasing the severity of COVID-19. While the FDA has yet to approve this medication for use against the COVID-19, nations and hospitals around the world already have been stockpiling and using it for weeks to combat the virus that has terrorized and paralyzed the world.
And thus, a second terror now grips the hearts of millions of people across the planet who suffer from an invisible, ever-increasing scourge that similarly steals lives and physical capacity without mercy — autoimmune disease.
Hydroxychloroquine, better known to the autoimmune community as Plaquenil, is now impossible to obtain. Believe me; I’ve tried. It is on back order in nearly every pharmacy across the nation. The autoimmune community is counting down the number of days we have left of Plaquenil before we are at the mercy of our various diseases that attack our lungs, kidneys and other organs on a daily basis without its protection. A secondary health crisis is looming.
Who uses Plaquenil? For one, it is essentially the only medication that helps control the ravages of lupus. It restores to people with rheumatoid arthritis, mixed connective tissue disease, undifferentiated connective tissue disease and a host of other pernicious illnesses the use of their hands, legs, feet and other appendages that otherwise are wracked with pain and dysfunction.
I know this because, four years ago, I quite abruptly lost the use of my legs and hands. Almost overnight, I went from a hard-charging, do-it-all lawyer and mom with degrees from Brown University, Oxford University and Harvard Law who was used to overcoming any obstacle, to a person who needed help buttoning her blouse and climbing the stairs. What commenced for me was a three-year journey of physician disbelief, ridicule and failure to a diagnosis that left me incapacitated and unable to perform the simplest of physical tasks without excruciating pain.
It was only last April when a team of excellent physicians at Johns Hopkins Hospita identified my undifferentiated connective tissue disease and commenced a regimen of Plaquenil that I began to live again. Within a matter of weeks, I started to improve dramatically. It takes six months to obtain the full benefit of Plaquenil. After that half a year, I was tap dancing again, picking up my 5-year-old daughter, cooking, dressing myself independently, typing without ice packs on my arms and exercising like a normal person. I recall crying as I braided my daughter’s hair for the first time in her life.
As it has for so many others, Plaquenil restored my life. It is my miracle drug.
As I examined my bottle recently, which contains a scant month’s supply, I considered what it will be like to return to the pain that previously consumed me. My rheumatologist has advised me to cut back my dosage by half to extend my supply as long as possible and has told me to be prepared for a long, international shortage. I have reached out to others in my autoimmune community online, and we are all facing the same bleak future.
One might ask, why don’t these autoimmune patients take an alternative medication? The answer is simple. Most alternatives have much more serious side effects and are often immunosuppressants. It’s a heck of a time to start taking immunosuppressants, which would hurt our bodies ability to fight off coronavirus.
If Plaquenil can help shorten or diminish the intensity of COVID-19, that would be a wonderful miracle. I will willingly forgo for a time my miracle drug to save other peoples’ lives. I lived in dysfunctionality for three years, and I can survive another one.
I do have one plea, however, expressly to the pharmaceutical companies such as Sanofi and Teva that claim to be ramping up production of hydroxychloroquine and Plaquenil in response to this worldwide crisis.
Please do not forget the regular, daily users whose organs also need the protection afforded by this medication. As you announce to the world that you are producing millions of doses to donate for free, please ensure that not all supplies immediately get diverted to hospitals or governmental bodies without considering the individuals whose long-standing prescriptions are all on “back order.” Please set some supplies aside for us, as well.