According to the Lupus Foundation of America, of the 5.0 million people worldwide who have the disease, approximately 1.5 million live in the United States – and 90 percent are women, even though men, children, and teenagers can develop lupus, too.
People with lupus can experience a variety of symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms.
Hydroxychloroquine (HCQ) belongs to the family of medicines called “antimalarials” (AMs), which are also classified as disease-modifying anti-rheumatic drugs, or DMARDs. In 1956, the U.S. Food and Drug Administration (FDA) approved HCQ for symptoms of lupus and rheumatoid arthritis, particularly skin inflammation, hair loss, mouth sores, fatigue, and joint pain.
Clinical trials have proven that HCQ’s are effective in decreasing the number of disease flares-ups as well as decreasing the extend of damage overall in time. This effectiveness has also led to increased long-term survival.
Trump touts hydroxychloroquine as preventative
On Monday this past week, President Trump let it be known he had been prescribed hydroxychloroquine by the White House physician as a prophylactic to prevent the coronavirus. This news really hurt a segment of our population already suffering from supply shortages of the medication.
When Trump began touting the anti-malarial back on March 19, state and local governments, among others, started snapping up the drug, according to USA Today. By March 31, the drug had hit the FDA’s list of drugs in short supply and it has been on that list ever since.
Based on member purchase data shared by Vizient, a group purchasing organization that serves about 3,000 hospitals in the U.S., the demand of hydroxychloroquine in April was about 17 times bigger than in January.
“I’m angry, disappointed, and scared,” said Jen Incandela in South Barrington, Illinois, who has fought lupus for eight years and has been unable to refill her prescription of hydroxychloroquine since April 4. Incandela, 35, said her days are “exceedingly difficult” without her daily dose of two 200 milligram pills.
Here is what really hurts – She was paying about $10.00 monthly for her medication. She has now gone without any medication for over a month, once her regular pharmacy ran out. Another pharmacy her doctor recommended wanted the equivalent of 13 times as much monthly, according to a document Incandela shared.
Jamie Manson, a 43-year-old lupus patient in Long Island, recently found a generic supply of hydroxychloroquine from a local CVS pharmacy. The CVS pharmacist told her the store was giving out whatever the warehouse sent and had no idea when the name brand would be back in stock again.
And as Trump continues to tout his use of the anti-malarial, “We have to have a president that is not putting out anything but misinformation,” Manson said.
Jennifer McCollom, who’s struggled with lupus for eight years and couldn’t get her medication for more than two weeks, said the drug she needs “should not be used as a prophylactic.”
“It shouldn’t be hoarded away from people who are sick like us,” said McCollum, 48, of Thornton, Colorado. “It feels to me like survival of the fittest right now.”
