A new citizen movement is gathering steam to try to convince the influential World Health Organization to change its messaging about how the coronavirus is transmitted.
The new petition "COVID is Airborne" (www.covidisairborne.org) started in early November and has approximately 3,000 signatures. During this particularly dangerous acceleration of the pandemic, the petition's backers allege that the WHO is failing the public with mixed messaging and thus inadvertently fueling the wildfire of transmission.
"Early on in the pandemic, [WHO Director General Dr. Tedros Adhanom Ghebreyesus] said that coronavirus is airborne, but then in March, WHO tweeted that COVID-19 is not airborne, saying that it is primarily transmitted via droplets that are too heavy to hang in the air," says petition co-creator Jessica Bassett Allen.
The organization's late March messaging, still available on social media, is a digital graphic saying, "FACT CHECK: COVID-19 is NOT Airborne".
Screenshot of WHO's Tweet from March 28, 2020 that is still published.
The petition asks for a course correct: "We, citizens of the world, request that the World Health Organization (WHO) recognize the compelling scientific evidence that SARS-CoV-2 spreads by aerosol transmission ("airborne") and urge the WHO to immediately develop and initiate clear recommendations to enable people to protect themselves."
In the vacuum of the WHO's inaction, aerosol scientists around the world scrambled to raise awareness of what they saw as a grave error.
"Almost immediately after that [March 28] announcement, we formed a group of 239 scientists from many countries and disciplines to convince them that they should acknowledge that there is airborne transmission, but we find that they are totally dead set against it," says Dr. Jose Jimenez, a chemistry professor at the University of Colorado at Boulder who has studied aerosols for 20 years. He supports the citizen petition.
In a letter to the WHO back in July, he and his colleagues wrote: "Studies by the signatories and other scientists have demonstrated beyond any reasonable doubt that viruses are released during exhalation, talking, and coughing in microdroplets small enough to remain aloft in air and pose a risk of exposure at distances beyond 1–2 m from an infected individual."
The scientists have also gone direct to the public with their findings: They published a comprehensive Google doc with detailed answers to many people's frequently asked questions about how to protect themselves, addressing issues ranging from the best masks and air filters to how to deal with passing someone outdoors and much more.
It's worth noting that the CDC has now modified its COVID FAQ to include airborne transmission as a "less common way" for the virus to spread. This update took place after the CDC stated in September that it is "possible" the virus spreads via airborne transmission – only to reverse course and remove the language from its website several days later. The CDC's website now states that some viruses, including SARS-Cov-2, "may be able to infect people who are further than 6 feet away from the person who is infected or after that person has left the space."
Basset Allen notes that after the scientists' open letter, the WHO "added ventilation to public communications about how to prevent infection, but they haven't explained why."
When contacted, a WHO representative had no specific comment and shared its late March announcement as well as its latest guidelines on transmission. In part, its statement says, "Current evidence suggests that the main way the virus spreads is by respiratory droplets among people who are in close contact with each other. Aerosol transmission can occur in specific settings, particularly in indoor, crowded and inadequately ventilated spaces, where infected person(s) spend long periods of time with others, such as restaurants, choir practices, fitness classes, nightclubs, offices and/or places of worship. More studies are underway to better understand the conditions in which aerosol transmission is occurring outside of medical facilities where specific medical procedures, called aerosol-generating procedures, are conducted."
A forceful and clear message acknowledging the evidence could make it easier to standardize school and office ventilation, petitioners argue.
Aerosol scientist Jimenez was dismayed by the WHO's response.
"The first part is an error in my opinion," he says. "Current evidence suggests that the main way the virus spreads is inhalation of aerosols.…WHO is way behind, unfortunately.
"The second part is incomplete," Jimenez continues. "Aerosol transmission can happen in those indoor crowded low-ventilation spaces. But if aerosols can accumulate under those conditions and cause infection, they must be extremely infective in close proximity when talking, since they are much more concentrated there. Just like talking close to a smoker you would inhale much more smoke (which is an aerosol) than if you were in the same room, but let's say 10 or 15 feet away."
He adds, "The WHO and others are making the assumption that if this goes through the air, then everyone who is infected is putting a lot of virus into the air at all times, but we know that's wrong: People are infectious for a short period of time before and during their symptoms. In China, they have measured how much virus comes out of people, and they see that the emission is sporadic: The virus can come out in millions of viral [particles] per hour, but it doesn't happen all the time."
The petition's co-creator, Basset Allen, says that her life experience showed her the best way to make a change. "My involvement with this effort is entirely personal," she says. "I was first introduced to HIV treatment activism as a college student and what I learned about campaigning and power has been relevant in almost every other project I've worked on since then. HIV activism taught me that everyday people can win big, life-saving policy changes if they build expertise and work strategically to push decision makers."
The petition and its advocates argue that the WHO's mixed messaging is causing real harm. For instance, a forceful and clear message acknowledging the evidence could make it easier to standardize school and office ventilation, they argue. Anecdotally, some schools have refused to install HEPA filtration in their classrooms due to a lack of specific guidance from health agencies. (Note: The CDC now recommends improving central air filtration and considering the use of portable HEPA filters in classrooms.)
As the holidays approach, a clear and unified message from all influential health agencies would also help people understand why it is still important to wear masks while physical distancing, especially indoors.
"Personally, I cheered when I heard President-Elect Biden mention ventilation upgrades in schools during the first 10 minutes of his October town hall event, and again in the second debate," Basset Allen says. "Unfortunately, we're still more than two months away from the Biden administration taking over the U.S. COVID-19 response and we have to do absolutely everything we can right now to save as many lives as possible. Increasing awareness of airborne transmission and mitigation strategies can't wait. WHO can use its power to help close that gap, here and around the world."
At age 52, Glen Rouse suffered from arm weakness and a lot of muscle twitches. “I first thought something was wrong when I could not throw a 50-pound bag of dog food over the tailgate of my truck—something I use to do effortlessly,” said the 54-year-old resident of Anderson, California, about three hours north of San Francisco.
In August, Rouse retired as a forester for a private timber company, a job he had held for 31 years. The impetus: amyotrophic lateral sclerosis, or ALS, a progressive neuromuscular disease that is commonly known as Lou Gehrig’s disease, named after the New York Yankees’ first baseman who succumbed to it less than a month shy of his 38th birthday in 1941. ALS eventually robs an individual of the ability to talk, walk, chew, swallow and breathe.
Rouse is now dependent on ventilation through a nasal mask and uses a powerchair to get around. “I can no longer walk or use my arms very well,” he said. “I can still move my wrists and fingers. I can also transfer from my chair to the toilet if I have two of my friends help me.”
It’s “shocking” that modern medicine has very little to offer to people with this devastating condition, Rouse said. But there is hope on the horizon. Yesterday, the U.S. Food and Drug Administration approved Relyvrio, a drug made up of two parts, sodium phenylbutyrate and taurursodiol, to treat patients with ALS.
“This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure,” said Billy Dunn, director of the Office of Neuroscience in the FDA’s Center for Drug Evaluation and Research, in a statement. “The FDA remains committed to facilitating the development of additional ALS treatments.”
Until this point, the FDA had approved only two other medications—Riluzole (rilutek) in 1995 and Radicava (edaravone) in 2017—to extend life in patients with ALS, which typically kills within two to five years after diagnosis. That’s why earlier this week, Rouse was optimistic about the FDA’s likely approval of a controversial new drug for ALS.
When Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months, said Richard Bedlak, director of the Duke ALS Clinic. “It is not a cure, but it is definitely a step forward.”
“The whole ALS community is extremely excited about it,” he said the day before Relyvrio’s expected approval. “We are very hopeful. We’re on pins and needles.”
A study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective, the agency’s Peripheral and Central Nervous System Drugs Advisory Committee concluded in March. However, after some persuasion from FDA officials, patients and their families, the committee met again and decided to recommend approving the drug.
In January 2019, following an ALS diagnosis at age 58 in October the previous year, Jeff Sarnacki, of Chester, Maryland, was accepted into a trial for Relyvrio. “Because of the trial, we did experience hope and a greater sense of help than had we not had that opportunity,” said Juliet Taylor, his wife and caregiver. They both believed the drug “worked for him in giving him more time.”
In June 2019, Sarnacki chose an open-label extension, offered to patients by drug researchers after a study ends, and took the active drug until he died peacefully at home under hospice care in May 2020, five days after his 60th birthday. A retired agent with the federal Bureau of Alcohol, Tobacco, Firearms and Explosives who later worked as a security consultant, Sarnacki lived about 19 months after diagnosis, which is shorter than the typical prognosis.
His symptoms began with leg cramps in fall 2017 and foot drop in early 2018. A feeding tube was placed in 2019, as it became necessary early in his illness, Taylor said. He also took Radicava and Riluzole, the two previously approved drugs, for his ALS. “We were both incredulous that, so many years after Lou Gehrig’s own diagnosis, there were so few treatments available,” she said.
The dearth of successful treatments for ALS is “certainly not for lack of trying,” said Karen Raley Steffens, a registered nurse and ALS support services coordinator at the Les Turner ALS Foundation in Skokie, Ill. “There are thousands of researchers and scientists all over the world working tirelessly to try to develop treatments for ALS.”
Unfortunately, she added, research takes time and exorbitant amounts of funding, while bureaucratic challenges persist. The rare disease also manifests and progresses in many different ways, so many treatments are needed.
As of 2017, the Centers for Disease Control and Prevention estimated that more than 31,000 people in the U.S. live with ALS, and an average of 5,000 people are newly diagnosed every year. It is slightly more common in men than women. Most people are diagnosed between the ages of 55 and 75.
Most cases of ALS are sporadic, meaning that doctors don’t know the cause. There is about a one-year interval between symptom onset and an ALS diagnosis for most patients, so many motor neurons are lost by the time individuals can enroll in a clinical trial, said Richard Bedlack, professor of neurology and director of the Duke ALS Clinic in Durham, North Carolina.
Bedlack found the new drug, Relyvrio, to be “very promising,” which is why he testified to the FDA in favor of approval. (He’s a consultant and disease state speaker for multiple companies including Amylyx, manufacturer of Relyvrio.)
The “drug has different mechanisms of action than the currently approved treatments,” Bedlack said. He added that, when Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months. “It is not a cure, but it is definitely a step forward.”
T. Scott Diesing, a neurohospitalist and director of general neurology at the University of Nebraska Medical Center in Omaha, said he hopes the drug is “as good as people anticipated it should be, because there are not too many options for these patients.”
"FDA went out on a limb in approving Relyvrio based on limited results from a small trial while a larger study remains in progress," said Florian P. Thomas, co-director of the ALS Center at Hackensack University Medical Center and the Meridian School of Medicine. "While it is definitely promising, clearly, the last word on this drug has not been spoken."
So far, Rouse's voice is holding up, but he knows the day will come when ALS will steal that and much more from him.
ALS is 100 percent fatal, with some patients dying as soon as a year after diagnosis. A few have lasted as long as 15 years, but those are the exceptions, Diesing said.
“If this drug can provide even months of additional life, or would maintain quality of life, that’s a big deal,” he noted, adding that “the patients are saying, ‘I know it’s not proven conclusively, but what do we have to lose?’ So, they would like to try it while additional studies are ongoing.” The drug has already been conditionally approved in Canada.
As his disease progresses, Rouse hopes to get a speech-to-text voice-generating computer that he can control with his eyes. So far, his voice is holding up, but he knows the day will come when ALS will steal that and much more from him. He works at I AM ALS, a patient-led community, and six of his friends have already died of the disease.
“Every time I lose a friend to ALS, I grieve and am sad but I resolve myself to keep working harder for them, myself and others,” Rouse said. “People living with ALS find great purpose in life advocating and trying to make a difference.”
The Friday Five covers important stories in health and science research that you may have missed - usually over the previous week, but today's episode is a lookback on important studies over the month of September.
Most recently, on September 27, pharmaceuticals Biogen and Eisai announced that a clinical trial showed their drug, lecanemab, can slow the rate of Alzheimer's disease. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend and the new month.
This Friday Five episode covers the following studies published and announced over the past month:
- A new drug is shown to slow the rate of Alzheimer's disease
- The need for speed if you want to reduce your risk of dementia
- How to refreeze the north and south poles
- Ancient wisdom about Neti pots could pay off for Covid
- Two women, one man and a baby