Within the past week, a drug called chloroquine has been publicly talked about for potentially treating COVID-19. Donald Trump mentioned it at a press conference, Elon Musk tweeted about it and they have been running some trials with it in France, China, and Australia.
As great as it may be if this helps with the virus, it is an extremely important drug for Lupus sufferers around the world. Since these announcements, Chloroquine and its variant hydroxychloroquine (HCQ) have experienced major shortages in the U.S.
Hydroxychloroquine is by far the most frequently used drug for the management of Systemic Autoimmune Diseases. “In systemic lupus erythematous HCQ therapy reduces activity, the accrual of organ damage, risk of infections and thrombosis and improves the cardiometabolic profile. It contributes to induce lupus nephritis remission, spares steroid use and increases survival rates,” as published in the U.S. National Library of Medicine.
Lupus is a long-term auto-immune disorder, where the body’s immune system attacks normal, healthy cells and tissues. This is an extremely painful disease that affects 1.5 million Americans and at least 5 million people around the world.
President Trump recently called the drug a “game-changer” and went on to say:
The FDA is working very hard to get it out. I’m not being overly optimistic or pessimistic… I sure as hell think we’ve got to give it a try.. we have nothing to lose. You know the expression: What the hell do you have to lose?
Well, Mr. Trump, what do people with Lupus have to lose? They could potentially lose there lives, because of these shortages Lupus patients are extremely worried they will be unable to get their medications that they take every day!
Lupus has always been a mystery to doctors and scientists. There is no cure for the disease, and hydroxychloroquine has been the standard of care for Lupus patients since the beginning to prevent systemic involvement to the internal organs. Once Lupus starts attacking the internal organs, it can lead to organ failure and the need for organ transplants.
This is what the hell there is to lose. If these patients continue to see shortages or even worse are unable to access this medicine, they could experience excruciating pain, before leading to death.
Dr. Saira Sheikh – Director of the University of North Carolina (UNC) Rheumatology Lupus Clinic and member of the Lupus Foundation of America’s Medical Scientific Advisory Council is recently quoted as saying:
A shortage of this medication means that people who need it the most may not be able to access it, which could result in increased morbidity from their disease – this means worsening symptoms, flares, poor quality of life. and, as a result increased utilization of healthcare during times when our healthcare systems are already stressed and overwhelmed because of Covid-19.
Now the Lupus Foundation of America is asking Congress for help to please maintain a supply of this essential life-altering drug for Lupus patients. They are calling for patient protections that will ensure people with Lupus have continued access to hydroxychloroquine.
They are urging Congress to increase FDA monitoring to report shortages to ensure a consistent supply, especially for people with pre-existing medical conditions who are reliant on these medications.
- Relax restrictions on refill timing and allow for an extra 30 days or up to a 90 day supply for Lupus patients to reduce returns to the pharmacy.
- Allow for mail orders from pharmacies, and if necessary allow for out of state mail orders
- Relax the requirements for the need for in-person visits for refills
- Allow for assistance with cost-sharing related to their emergency supplies and allow for delayed out-of-pocket payments.
Everyone in the world is hopeful to find treatments for COVID-19. However, it cannot be stressed enough that if they wish to begin using an existing drug that is currently used by millions of people that depend on this for a better quality of life, especially one that prevents a disease such as Lupus from attacking their internal organs, it must be taken seriously.
This garners immediate attention by Congress and governments around the world. If this drug is going to be used in clinical trials, which it already is, the people whose lives depend on it daily, need access to their medicine.
