Her doctor wants her to take hydroxychloroquine for rheumatoid arthritis. Trump was excited about this drug for coronavirus patients, which has led to people hoarding it – even though it is still being tested and may not even work against the virus.
MacKenzie, 58, went to several pharmacies near her home in New Canaan, Connecticut, and found that they were all out.
“Trying to do all the work I have tried to do to keep everyone healthy exacerbates the swelling and pain. It gets pretty intimidating, ”said MacKenzie, who lives in New Canaan, Connecticut.
Dr. Alfred Kim, a rheumatologist in St. Louis, said his patients face the same predicament due to Trump’s comments on hydroxychloroquine.
After Trump’s initial adoption of the drugs in mid-March, Kim checked with nearby pharmacies and found that “the entire local supply was exhausted” within a few days, he told CNN .
Kim co-authored a column in a medical journal last month to warn doctors of the “impending public health crisis” – in addition to the pandemic – that the race for chloroquine and hydroxychloroquine could cause Americans who depend on medications to treat chronic illnesses.
When lupus patients who regularly take hydroxychloroquine stop taking it, they often develop withdrawal symptoms and flare-ups that require hospitalization, said Kim. This peak could occur at a time when hospital beds are already filled with Covid-19 patients. And it could disproportionately affect women, who make up around 90% of adults with lupus.
Trump’s optimism about hydroxychloroquine
Trump has been a cheerleader for the combination of hydroxychloroquine and antibiotic azithromycin, otherwise known as Z-pack, although they are still under study and may not be safe or effective in preventing or treat coronavirus infections.
“I think it could be a game-changer and maybe not,” Trump said in a White House press briefing on March 19. “It could be based on what I see, it could be a game-changer. Very powerful. They are very powerful. “
“I think it could be something really incredible,” he added about the related drug chloroquine.
Trump has mentioned this repeatedly, including at another briefing on March 23.
“The hydroxychloroquine and the Z-pack, I think the combination looks very, very good,” he said.
In a briefing on Saturday, he said that lupus patients were less likely to contract the virus because they were already taking hydroxychloroquine, but quickly backed down.
“Now it may be correct, it may be false. You are going to have to check that out, “he said.
His scientific advisor, Dr. Anthony Fauci, then said that the issue “is currently under consideration, but we have no data to be able to say anything definitively.”
Kim, the rheumatologist from St. Louis, said the President’s latest statements would make the shortages even more severe.
“We have a fraction of our patients who can’t get it now, and we expect it to get worse due to comments that have been made this weekend, Trump doubling and tripling the preventive use of the hydroxychloroquine, ”said Kim.
Doctors, hoarding, hydroxychloroquine
Since Trump started touting the suit in mid-March, pharmacists have found doctors writing prescriptions for both drugs – for themselves, for family and friends.
Two weeks later, Atlanta pharmacist Ira Katz is still going through the same thing.
“I receive electronic prescriptions from across the country from doctors I don’t know for patients I don’t know,” he said. “We want to make sure there is enough for the patients who will need it. “
The American Medical Association and other professional organizations have issued a statement calling on doctors and pharmacists to be “mere caretakers of health care” during the coronavirus crisis.
Patient groups contacted Vice President Pence.
“We are concerned that the increased demand for these drugs assigned to COVID-19 has exacerbated their already limited availability for patients who depend on them to meet their medical needs,” said a letter to Pence from several groups. , including the Lupus Foundation of America. and the Arthritis Foundation. “We urge you to work with us and the broader health care community to help ensure the continued availability of these medications for the patients who are kept there to avoid disability, illness and even premature death.” “
Relief for patients who need hydroxychloroquine
According to the National Alliance of State Pharmacy Associations, at least 22 states have adopted regulations to limit prescriptions for hydroxychloroquine. As a general rule, the regulations oblige doctors to write a diagnosis on the prescription.
The Arthritis Foundation and the Lupus Foundation have advice and information for patients who take hydroxychloroquine.
MacKenzie, the Connecticut patient who cannot find hydroxychloroquine, is trying remedies like ginger, which she says have not helped.
She says she wants Trump to leave the discussion of hydroxychloroquine to healthcare professionals.
“This is what we should listen to, and I think he should step down,” she said.
The same situation is playing out in all corners of the country, affecting young and old.
Rachel Alder, a 24-year-old social worker in Utah, said she had taken hydroxychloroquine for three years while battling a chronic autoimmune disease. It is “a kind of miracle drug,” she said, because the drug reduces fatigue and swelling without serious side effects.
“I recently contacted the pharmacy and tried to refill my next refill because that is what my doctor recommended, just to have a stock,” said Alder. “They wouldn’t let me do it. It was frustrating and scary. I’m ready for the next two weeks, but there’s a lot of uncertainty and fear after that. If you miss your medication, there are a lot of consequences for people like me. “
With only about 1,700 confirmed coronavirus cases, Utah is currently in the middle of the pack compared to other states. But as the disease spreads, Alder said she feared it might become impossible to refill her prescription for hydroxychloroquine as things got worse.
A lupus patient who was unable to obtain his hydroxychloroquine found relief thanks to the kindness of strangers.
On March 26, for a CNN town hall with Anderson Cooper and Dr. Sanjay Gupta, Edward Sabatini, 55, who lives in Miami, sent a video explaining that he only had 10 days of hydroxychloroquine and that his pharmacy he said, he was exhausted.
Literally overnight, he received four different offers of the drug from patients with lupus and rheumatoid arthritis. Eight other offers followed.
“They took the time to find me and went through all this trouble just for a stranger,” said Sabatini, a retired restaurant executive. “They gave me medicine from their own stock, and I told them they would need it along the way. But they said, ‘No, I have a 90-day stock, I’ll worry about that in three months. now i’m worried about you. “
His pharmacy also found pills. He now has enough for about a month and a half.
“These people, complete strangers, were so kind, compassionate and generous,” he said. “It was the most comforting feeling. “
CNN’s Wes Bruer, John Bonifield, Minali Nigam, Gina Yu, Sophie Varon and Michael Besozzi contributed to this report.