Trump calls it the COVID-19 amendment. Currently, Lupus patients cannot take medicine | Nation / World

KANSAS CITY, Missouri-Before Ishakelly went to the pharmacy last week, she heard from other Lupus patients that she might have trouble filling out prescriptions.

Her drug, hydroxychloroquine, sold under the brand name Plaquenil, keeps her body away from her. Although considered to be the most important drug for lupus patients, it is also currently being studied as a potential treatment for new coronaviruses.

Before Plaquenil, Kelly’s children had to help shower and dress, as her feet were wobbling like a jero due to an autoimmune disease.

She was exhausted, sitting on the sofa, before Plaquenil.

Before Plaquenil, her thick and shiny hair slipped out in chunks.

At a price chopper pharmacy in the Mission of Kansas, the pharmacist told her that she could only have 10 days of supplies, instead of the usual 30 days.

“So you know when to get it?” Kelly asked him.

He could not tell her.

Pharmacies across the country have run out of drugs used by millions of patients with lupus and rheumatoid arthritis.

Hydroxychloroquine has begun to sell out after President Donald Trump advertised a potential “game changer” treatment for coronavirus. A French study published this month, along with the antibiotic azithromycin, suggested that the drug could be effective in treating COVID-19 patients.

Now supplies are depleted. Also, some patients are considering dispensing a daily dose, or skip some days altogether, as health advocates and physicians warn them not to panic I am considering that.

“My fear is being hospitalized and I don’t want to go to the hospital,” said Misty Helm, a 48-year-old lupus patient living in Lexington, Missouri.

After working for 22 years in the automotive industry, including 10 years at the Ford Claycomo factory in Kansas City, she kept weight on her body and watched her hands and feet swell like sausages, 2004, after many years Was diagnosed

“It’s not a fun illness,” she said.

Reports of people stockpiling drugs have surfaced. Currently, Missouri pharmacy officials are warning healthcare providers to stop prescribing drugs for unapproved use.

According to the Associated Press, pharmacies across the country have reported that doctors are writing prescriptions for themselves and their families to stock up on drugs.

Several states, including Kentucky, Ohio, Nevada, Texas, and now Missouri, have issued restrictions or guidelines on how to prescribe drugs.

“ Prescribing hydroxychloroquine, chloroquine, and azithromycin to family, friends, and colleagues in anticipation of COVID-19-related illness has a significant impact on drug supply and improper use, ” the Missouri Registry Commission’s joint statement last week said. It could lead to the situation. ” For Healing Arts and Missouri Pharmacy.

Kelly now has enough small white tablets (including those she hasn’t yet taken since her last refill) enough for her to last about two weeks, as people scooped it for use in coronaviruses Have

“I’m nervous. I’m not going to lie,” said Kelly.

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Last week, the Lupus Foundation of America, the American College of Rheumatology, the American Academy of Dermatology, and the Arthritis Foundation called on the White House Task Force and governors across the country to participate.

The Food and Drug Administration has approved hydroxychloroquine and chloroquine only for the treatment of lupus, rheumatoid arthritis and malaria, the group said in a joint statement and said “ rigid clinical trials to investigate drugs for COVID-19 use. ” “.

“Already today, due to a major shortage of hydroxychloroquine, many patients have failed prescriptions, validated reports across pharmacy countries have exhausted supplies, and half of pharmaceutical companies report back orders.” They are writing.

After a French study was published, “ We called local pharmacies and had hundreds of plaquenil at every pharmacy, ” said a rheumatologist and director of the University of Washington-Lups Clinic in St. Louis. Said Alfred Kim.

“But then problems arose, and social media, and even state leaders, created hydroxychloroquine … and called it a cure. This clearly increased interest in plaquenil.”

According to the Centers for Disease Control and Prevention, based on limited case data, both hydroxychloroquine and chloroquine are used to treat hospitalized coronavirus patients worldwide, including the United States.

Although it has not approved a drug specifically for treating COVID-19, the FDA has rapidly approved ongoing clinical trials in Minnesota and New York.

Trump tweeted on March 22. “The combination of hydroxychloroquine and azithromycin has the opportunity to become one of the largest game changers in medical history. The FDA has relocated the mountains—thank you! Hopefully, both (H is the International Journal of Antimicrobial It works great with Agents A) … it’s ready to use. People die, fast, and God blesses everyone! “

“ We saw it blow up over the weekend as President Trump continues to talk about it, ” said Amy Ondol, chairman of the Lupus Foundation America’s Heartland Branch, which covers Missouri and eastern Kansas. Was.

“It should be prescribed off label and should not be prescribed. There is no approved use of COVID-19, but some physicians still prescribe this to patients. Do you want to ask? ” We do not provide medical advice. “

But she knows what can happen to lupus patients who do not use her medicine. According to Ondr, this is called lupus flare and “where their disease activity increases.” “At that time, organs may be damaged.

“ It is their fear, because plaquenil helps maintain a kind of illness, they can potentially be life-threatening for them if they need to stop taking the drug or start reducing their dosage You will be in a lupus-like form. “

Kim said the stock price “has dropped to near zero and the supply chain has not yet caught up.”

Plakenil is not available without a prescription. “It’s undoubtedly prescribed by other providers, such as doctors and dentists,” he said. “And, unfortunately, I was able to confirm the reports of some prescribers storing it.

“In my opinion, this is an unethical use of the power they need to have in order to treat certain diseases using prescription drugs. In this particular case, the data is very weak, The justification for treating COVID-19 patients is insufficient.

“Additionally, there is no data to support its use as a precautionary measure, so people are using it as a precautionary measure to interpret results that have already been compromised due to design issues in the study. Because they are doing too much. “

Four health advocacy groups have called on the government to work with the pharmaceutical industry to increase production and ensure that patients using the drug for approved use can be supplied continuously for 90 days.

Kim said several pharmaceutical companies have already said they would make more. His clinic has filed a request with Novartis. Novartis announced that it will donate up to 130 million generic hydroxychloroquines for use in COVID-19 clinical trials.

“We don’t want this drug to sound the same as we don’t want to go to people with COVID-19. Of course we do,” said Ondr. “We want to be a little responsible for what is going on here.”

Helm called a pharmacy in Lexington an email from the Lupus Foundation alerting him of the shortage, but said it was too late. They told her that there was no more plaquenil and couldn’t tell her when to increase.

Helm said this had never happened before.

“It’s frustrating because they needed to know that this would cause a shortage and other people taking it would be affected,” she said.

(Editor: The story can end here)

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La Tanya Pitz Rip Run in Kansas City did what she does not because her phone was ringing all week long.

“Normally, I don’t join Facebook like this, but over the past few days I’ve received a lot of calls about the announcements they’ll use for viruses. Used, “she said in a video posted on a Facebook page. Marlene’s Kaleidoscope, a lupus nonprofit she started in 2017.

Pitz Lapland, 52, was diagnosed with lupus about 30 years ago. She went to CVS and limited her to one month because the pharmacist was not enough to get the usual three months’ supply of plakenil a few weeks ago.

In a video she talked about taking a phone call from a terrifying patient, “I was worried that I couldn’t get their medicine at this time. I want everyone to understand.

“Today I got four calls about people who are afraid and concerned. They are talking about distributing their medicine. To take it.

“I’m not a doctor. I’ve been suffering from lupus for over 27 years. Personally, I don’t think it’s a good idea.”

Ondr receives the same call.

“This is a drug that is being taken by so many Lupus patients, and is sometimes the first choice for people diagnosed with lupus. So they have been doing it for a long time,” said Ondr. . “They are in a hurry. They are scarce. They are not in pharmacies.”

(Editor: The story can end here)

Kim is trying to quell the patient’s panic and reassures them that they are going further.

He is also telling them to try a mail order store that may have more stock. One company, Express Scripts, “had done a great job of reinforcing supplies,” he said.

Note: This advice is based on information that changes almost daily. “The situation is very dynamic and changing,” he said.

“So now I think the best thing (for the patient) is to keep taking the drug until the drug runs out. To better understand the condition of the land, contact the prescriber, usually a rheumatologist, Please compete. “

Meanwhile, Pitzlip Run has launched a campaign for one woman. Currently, given the home orders around Kansas City, she is currently unable to meet one-on-one with anyone. But she will be back on Facebook shortly.

“I want everyone to calm down,” she said.

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