Kaydence Lusk was just five months old when she was diagnosed with a rare lung disease. The seven-year-old is now in second grade, rarely needs to take oxygen and, earlier this year, was able to enjoy a trip to Disney World with her family, through the Make-A-Wish Foundation.
Her disease, so rare that only eight or so doctors in the U.S. currently treat it, stumped physicians in Kaydence’s first months of life, when she cried for most of her waking hours and began to lose weight, her mother, Tammy Faucheux said.
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After all other causes had been ruled out, Kaydence’s condition, called surfactant protein C deficiency, was diagnosed through a lung biopsy.
“That was a hard decision,” Faucheux said. “We had no other choice.”
There is no cure for the condition; one day in the future, in her early teens perhaps, Kaydence will need a double lung transplant.
Two daily medicines prescribed shortly after her diagnosis, however, changed Kaydence’s daily life. One is the antibiotic azithromycin. The other medicine is one that’s getting a lot of attention these days, hydroxychloroquine.
It’s a medicine that’s regularly prescribed for patients with chronic diseases such as lupus and rheumatoid arthritis. But now hydroxychloroquineis being studied in clinical trials — at the LSU School of Medicine for one — and reportedly used as a treatment for COVID-19.
Currently, no medicine has been approved by the U.S. Food and Drug Administration for the treatment of the disease.
Another 141 cases of the coronavirus were confirmed in the Baton Rouge area on Saturday, bringing the total so far to 2,751.
The turn of events is leaving families like Kaydence’s and others who rely on hydroxychloroquine worried that supplies of the medicine will run out.
“I’m in touch with other families, they’re all concerned,” Faucheux said last week.
She said she felt encouraged when two pharmaceutical firms in recent weeks donated the medicine to Louisiana — 400,000 tablets from Amneal Pharmaceutical and 75,000 tablets from Teva Pharmaceutical — through the State Attorney General’s Office.
But then, she said, she found herself trying to do impossible math: how many people already rely on hydroxychloroquine? How many patients now facing the coronavirus will need it.
“How far will it go?” she asked.
Attorney General Jeff Landry said Thursday that “every time we are able to provide additional hydroxychloroquine into Louisiana, we are able to relieve the supply and demand for patients who are already using it.”
Landry said he’s checking daily with national retailers that have in-store pharmacies, national pharmacy chains and distributors “to be sure they have the supply.”
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“There’s a lot in play here,” Landry said. “I believe that this drug has some promise.”
“It’s not a silver bullet or a magic wand, but every time we have the opportunity to keep a person out of the hospital and off a ventilator that’s a good thing,” he said.
In late March, the American Medical Association, the American Pharmacists Association and the American Society of Health-System Pharmacists issued a joint statement saying they strongly oppose the prescription of hydroxychloroquine to treat COVID-19.
The three associations said they made the statement “in response to reports of physicians and others prophylactically prescribing medications currently identified as potential treatments for COVID-19 (chloroquine or hydroxychloroquine, azithromycin) for themselves, their families, or their colleagues.”
The statement says there have been reports of pharmacies and hospitals hoarding excessive amounts of the medicines for possible use as a coronavirus treatment.
“Stockpiling these medications — or depleting supplies with excessive, anticipatory orders — can have grave consequences for patients with conditions such as lupus or rheumatoid arthritis if the drugs are not available in the community … Being just stewards of limited resources is essential,” the statement says.
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The three medical associations said they “applaud the ongoing efforts to conduct clinical trials and generate evidence related to these and other medications during a time of pandemic.”
Tammy Faucheux said that her daughter’s monthly prescription of hydroxychloroquine is compounded at a locally owned pharmacy in Tangipahoa Parish, not far from the family’s home in Natalbany.
Because the medicine can have serious side effects, the tablets are crushed and added to water; Tammy’s daughter, Kaydence, takes a little of the liquid prescription medicine every day.
Tammy said that, when she first heard reports of hydroxychloroquine being tied to coronavirus treatment, she called the pharmacy to see if her daughter’s medicine supply might be affected.
“‘No, it will be absolutely OK,'” she said she was told.
But earlier this month, when it was time to pick up her daughter’s medicine, Tammy Faucheux called ahead to see if it was ready; she said the person who answered the phone at the pharmacy said, “‘We can’t get that.'”
Faucheux immediately asked to speak to the pharmacist and was reassured: the medicine her daughter needs would be there.
“It felt like he was saying, ‘don’t worry, we’ll cover Kaydence,” Faucheux said.
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Faucheux said she’s worried, though, about “other people who don’t have that relationship with their pharmacist.”