Millions Of Families Struggling With Rare Illnesses Hit Hardest By Suspension Of Experiments, Trials
All research on diseases will be impacted by the current switch to COVID research, advocates say, but often there's a small window when therapies can work for the 30 million people in the U.S. impacted by rare diseases for which there is no treatment or cure. Public health news is on caregivers, learning loss, the lifting of an e-book ban, additional flights, experts repeat warnings, challenging get-togethers, congenital syphilis, and climate change, as well.
The Washington Post:
Medical Research On Deadly Rare Diseases Declines Amid Coronavirus Pandemic
Anissa Merriam was a vibrant teenager, a talented artist who loved anime and excelled in difficult classes. But at 14, she started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right, she told her parents. Eventually, Anissa was diagnosed with a rare, neurodegenerative form of epilepsy that strikes in early adolescence, causing intractable seizures and dementia. Most patients die before 30. Today, Anissa, at 22, likes to dress up like 1930s child star Shirley Temple, watch Disney movies and tap dance. (McGinley, 6/4)
The New York Times:
Did Mom Take Her Medicine? Keeping Eyes On Elders In Quarantine
Norman Potter’s mother, Dorothy, who suffers from a chronic pulmonary illness, lives alone in the mountain town of Newland, N.C., two hours from his home in Winston-Salem. For a year, Mr. Potter had been looking for technology that would enable him to monitor her health from afar. Mrs. Potter, 90, refuses to move closer to her son or daughter, Mr. Potter said. She and her seven siblings were born and raised in Newland. “She loves the house, her church and small group of friends,” he said. And, he said, “she is fiercely independent.” (Garland, 6/5)
The New York Times:
Research Shows Students Falling Months Behind During Virus Disruptions
While a nation of burned-out, involuntary home schoolers slogs to the finish line of a disrupted academic year, a picture is emerging of the extent of the learning loss among children in America, and the size of the gaps schools will be asked to fill when they reopen. It is not pretty. New research suggests that by September, most students will have fallen behind where they would have been if they had stayed in classrooms, with some losing the equivalent of a full school year’s worth of academic gains. Racial and socioeconomic achievement gaps will most likely widen, because of disparities in access to computers, home internet connections and direct instruction from teachers. (Goldstein, 6/5)
The Washington Post:
Amazon Reverses Its Decision To Ban An E-Book That Questions The Science About The Coronavirus
Amazon on Thursday backed away from a decision to block the sale of a self-published e-book about the coronavirus after critics, including Tesla chief executive Elon Musk, blasted the ban. On Thursday morning, Alex Berenson, a conservative-media favorite, tweeted to his more than 118,000 followers that Amazon banned his 6,400-word booklet. The booklet, “Unreported Truths about COVID-19 and Lockdowns: Part 1: Introduction and Death Counts and Estimates,” argues that the mainstream media is overstating the threat from the virus. Berenson dubbed them “Team Apocalypse.” (Greene, 6/4)
The Wall Street Journal:
Airlines Add Flights As Travel Slowed By The Coronavirus Starts To Pick Up
American Airlines Group Inc. on Thursday joined other carriers in restoring some flying that was curtailed due to the coronavirus pandemic, as parts of the country start to reopen. American’s schedule will still be significantly smaller than most summers, when many people go on vacation. American said it would operate 55% of last year’s domestic schedule in July. In April and May, American’s domestic schedule was 20% of last year’s levels. (Sider, 6/4)
CNN:
Coronavirus May Not Be Mutating, But Experts Say There Is Still Potential For Danger
Covid-19 is not mutating, health experts say, but that doesn't mean it's not dangerous. So far, evidence does not show that the coronavirus is changing to become more severe or more transmittable, but complacency by people and local governments could increase its spread, World Health Organization infectious disease epidemiologist Maria Van Kerkhove said Wednesday at a news briefing. (Holcombe, 6/4)
Boston Globe:
People Crave Togetherness. But What Happens When Friends Disagree About How Much Is Safe?
People crave togetherness right now — some more than others, leading to rifts among friends who take different views on COVID-19 protocols. Consider Malden City Council President Jadeane Sica, who threw an al fresco birthday bash last month and faced swift public backlash. Nobody wants to be the neighborhood pariah, but loneliness has a price, too. Researchers have found that it can be as damaging to health as smoking 15 cigarettes per day, says Dr. Jeremy Nobel, founder of the UnLonely Project, which promotes safe social connection through creative expression. (Baskin, 6/4)
Kaiser Health News:
Efforts To Curb Congenital Syphilis Falter In COVID’s Shadow
U.S. public health officials are closer to identifying a road map for curbing the rising rates of syphilis infections in newborn babies, but with so many resources diverted to stopping the spread of COVID-19, many fear the rate of deadly infections will only get worse. Congenital syphilis — the term used when a mother passes the infection to her baby during pregnancy — is often a devastating legacy, potentially leaving babies blind or in excruciating pain or with bone deformities, blood abnormalities or organ damage. (Barry-Jester, 6/4)
The New York Times:
Don’t Thank The Virus For Saving The Climate Yet
Much has been made about what the coronavirus “means” for climate change: measurable drops in carbon dioxide emissions and air pollution, behavioral changes that climate action might demand. To Daniel C. Esty, a professor of environmental law and policy at the Yale School of Forestry and Environmental Studies and Yale Law School, taking only those lessons from the coronavirus would be a missed opportunity. (Schlossberg, 6/4)
