Veteran advocates say they are frustrated at the lack of transparency around the Department of Veterans Affairs’ use of the unproven drug hydroxychloroquine as a treatment for coronavirus.
After the release of a preliminary study of veterans hospitalized with Covid-19 this week that showed that hydroxychloroquine — a anti-malaria drug touted by President Donald Trump — had no benefit and caused a greater amount of death, these groups want answers and are worried they may have been misled by the agency on its recent purchase of the drug.
Jeremy Butler, CEO of Iraq and Afghanistan Veterans of America, said that the results of the study were “incredibly troubling for a number of reasons” and that the VA needed to provide answers.
“Why were veterans who were receiving treatment from a federal agency being treated with an unproven and speculative drug?” he asked in a statement. “What was the approval process used by doctors, patients and their families in discussing and agreeing upon this treatment option? At what point did the VA know that the results were this dire and when did they act upon those results? What are the VA’s current procedures for approving and administering the drug?”
The study included results from 368 patients and is now the largest examination of the drug’s effect on patients suffering from coronavirus. Researchers concluded that there was a greater prevalence of death among those who took the drug rather than those who only received standard care.
Secretary Wilkie briefly mentioned the study in an interview with MSNBC last week, downplaying its results.
“That’s an observational study,” he said. “It’s not a clinical study. It was done on a small number of veterans. Sadly, those of whom were in the last stages of life, and the drug was given to them. And I have to also say that we know the drug has been working on middle-age and younger veterans.”
A VA spokeswoman also pushed back on the idea that they were testing the drug, which has not been scientifically evaluated for its uses to treat COVID-19, on patients.
“VA is not testing hydroxychloroquine,” said Christine Noel, the agency’s press secretary. “It is using it to treat COVID-19 in cases where Veteran patients and their providers determine it is medically necessary, and in a manner consistent with current FDA guidance.”
Noel said that study is not a clinical trial and was “an analysis of retrospective data regarding hospitalized patients” and “provided to VA’s sickest COVID-19 patients, many times as a last resort.”
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More than 370 veterans have died of the coronavirus and approximately 5,800 are confirmed carriers, according to the agency’s numbers on Wednesday.
Butler told NBC News that the drug and the study were briefly mentioned in two weekly meetings that veteran service organizations like his have had with agency leaders, including Secretary Robert Wilkie.
Multiple attendees of the meetings with the VA said they are not open discussions with the organizations, rather the VA says how it is handling various challenges and then leaders take a few questions curated ahead of time.
But, said Butler, the VA first characterized a large purchase of the drug as one made for its patients that suffer from lupus or arthritis — conditions the drug has been scientifically proven capable of treating. The most recent meeting on Wednesday, leadership briefly touched on the study but quickly moved on.
“In our notes from a week ago, it appeared Wilkie said that they are standing by for medical guidance on hydroxychloroquine,” he said. “We took that as meaning they were not using it.”
Sen. Jon Tester, D-Mont., the ranking member of the Senate Veteran Affairs Committee, sent questions to the VA regarding its large order of hydroxychloroquine after the study was released.
“After this order was put in, we asked about the purpose of this order, and we were told it was for routine treatment of lupus and arthritis,” the senator said in a request for information from the VA.
Tester also asked whether the patients were being treated after providing informed consent, what guidance the VA provided to facilities using the drug and whether it was engaged in any further studies.
As of late last week, his office was still waiting for the VA to respond.
The Veterans of Foreign Wars, one of the largest veteran service organizations in the country and one that represents many elderly veterans, said they are very concerned about the study and have many questions regarding the plan behind it and how it was rolled out.
Terrance Hayes, the VFW’s director of communications, met with the VA leadership twice this week and said that he’s received few answers and heard little about it.
“It feels like they’ve talked about everything but [the study],” he said.
It is not just advocacy groups that are upset that veterans were used in a study for a drug that only had anecdotal support within the medical community, which Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, has warned could be a false hope.
Rep. Mark Takano, D-Calif., the chairman of the House Veterans Affairs Committee., said while the results may be preliminary, he found the data released by the VA to be concerning and showed that it “may be premature to treat veterans” with the drug, “particularly in light of NIH recommending these drugs not be used.”
“I’m not convinced we’re ready for widespread off-label use of hydroxychloroquine at VA — especially when the administration hasn’t done enough research on its safety and efficacy for treating COVID-19,” he added. “When it comes to treating our veterans, we must rely on expert opinion and the proven science that leads to consistent guidance across the country.”
Rep. Ruben Gallego, a Democratic member of Takano’s committee and an Iraq War veteran from Arizona, went further, saying he was outraged that the VA appeared to turn veterans into experimental subjects to support an unproven treatment touted by the president.
“I think the most important thing is we need to keep veterans safe, not necessarily being test labs for the president to score political points,” Gallego said.
As the pandemic has spread across the United States, veteran service organizations, or VSOs, have said numerous times that the country’s second largest government agency charged with caring for the nation’s veteran population has remained tightlipped regarding its response to the spread of the coronavirus.
Many say they are concerned about reports that some veteran hospitals across the country have run short on PPE, despite the VA continuing to say that it has enough in stock.
The lack of specificity and media availability by department leadership has some concerned.
“The largest health care provider in the country and the backstop for the civilian health care system isn’t out front being heard from and having questions asked of it on a daily basis?” Butler said. “From the basic standpoint of a democratic society facing one of the largest health crises in a century, that seems incorrect and inappropriate.”