A Very Long Week
Hi!
I know I’m not the only one just absolutely exhausted from this week, so this felt like an apt tweet to share:
It took a month of being on top of providers, Kineret’s OnTrack patient ‘support’ team, insurance, and more - but I finally got my refill of Kineret. If you’re unfamiliar with that medication, it’s a daily shot that I have to take to help control my Systemic Juvenile Idiopathic Arthritis (SJIA). It’s one of only 3 medications that are FDA-approved to treat this subtype of JIA. It specifically works to inhibit Interleukin-1, a known prototypic pro-inflammatory cytokine, from running amuck in my body. It also can help limit and protect me from what I call the Big Bad - Macrophage Activation Syndrome (MAS).
SJIA tends to be more fatal and disabling than the other two subtypes of JIA, and MAS is a big reason why. It’s also very similar to MIS-C, the illness children are dealing with following COVID-19 infection.
Suffice it to say, despite the fact that I’m more immunosuppressed and concerned about going to the grocery store, I’m really glad to have that back. That goes double as my depression - which we know is influenced by inflammation levels in the body - was starting to creep back in.
Anyway, let’s crack into this week’s buffet of bullshit.
#GiveUsThisDayOurDailyThread
This week’s one thread is brought to you by frustrations over people being jerks around trauma:
Did we learn nothing from premature declarations of ‘mission accomplished’?
CDC wants to give people a break from wearing masks as pandemic improves, director says by Spencer Kimball:
The CDC currently recommends that people wear masks in indoor public places regardless of their vaccination status if they live in an area with high viral transmission. Nearly every county in the U.S. has high transmission right now, according to CDC data. People are required by federal law to wear masks on planes, buses, trains and other forms of public transportation.
However, states have started easing public health measures as new infections from the omicron variant rapidly decline from their peak levels in January. New York and California have dropped mask mandates for businesses, while New Jersey has also gotten rid of its mask requirement for schools.
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White House chief medical advisor Dr. Anthony Fauci told the Financial Times last week that the U.S. is heading out of the “full-blown pandemic phase of Covid-19.”
Here’s the problem - he’s said that before and it turned out poorly. On top of that, we’ve seen what happens when countries eliminate protections early.
In warning to U.S., COVID rates soar after Denmark lifts all restrictions by Andrew Romano:
At the beginning of February, Denmark became the first major country to lift the last of its COVID-19 restrictions and effectively declare its part in the pandemic over.
Around the world, and especially in the United States, Denmark’s “liberation” from indoor mask mandates, vaccine passports and nightclub closures was heralded as a watershed moment — the shape of things to come. Democratic governors across the U.S. started rescinding their own mask rules a few days later.
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Since then, however, Denmark has continued to record more COVID-19 cases per capita than nearly anywhere else in the world, and both COVID hospitalizations and deaths have shot up by about a third.
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It is not hard to imagine the U.S. fully embracing a similar “Let ’er rip!” attitude in the months ahead. In truth, many Americans — including nearly all Republican politicians and most red-state residents, as well as a substantial minority of left-leaning Americans — have been living that way for some time now.
The Moral Danger of Declaring the Pandemic Over Too Soon by Gregg Gonsalves:
And once more, the desire to get back to normal and to declare the end of another pandemic, at least for some of us, is palpable after more than two years of death, suffering and hardship. Governors’ recent lifting of mask mandates reflects that. There’s a demobilization that many suggest is contingent on what might happen with new variants but could easily become permanent. Much, if not most, of the country has moved on or wants to move on from Covid-19.
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The lesson of the AIDS pandemic is that it’s easy to leave people behind, even if it is at the cost of our collective peril. Coronavirus variants can develop in people with weakened immune systems who struggle to clear infections on their own, like those with untreated H.I.V. Think of the home we’ve then made for viruses like SARS-CoV-2 by impeding access to vaccines and by allowing millions to go without AIDS treatment even now. Variants can emerge because of our desire to put it all behind us. No one is truly safe until we all are. Yet might we act to save millions of people not just in the interest of self-preservation but also simply because it’s the right thing to do? That would be a signal that this pandemic has changed us. For good.
People will say “Oh, immunocompromised folks can just continue to stay home, avoid the doctor, and eat their house instead of going out for groceries. (Okay, not that last one, but you get my point.) It’s still bullshit.
Why One-Way Masking Isn’t a Very Good Public Health Solution by Abdullah Shihipar:
The masking debate has returned, as leadership in some states like New York and California move to remove their statewide mask mandates, and others like New Jersey decide it’s time for mask mandates to end in schools. (Of course, most states did not implement them for the omicron surge to begin with.) One thing that is different about the debate this time around is the emergence of a new idea that seems, at first, to let everyone have their way: one-way masking.
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What’s frustrating, though, is that one-way masking is being proposed as a sufficient alternative to universal masking for the immunocompromised. This adds a scientific veneer of legitimacy to lifting mask mandates at a time when U.S. COVID numbers are still far too high and more than 2,000 people are dying daily. Once you’ve introduced the idea of one-way masking as an alternative, bringing back universal mask mandates becomes hard to justify. Why ask everyone to wear a mask when in theory those who are most at risk can still protect themselves?
I get it—wearing a mask can suck. I don’t exactly enjoy it, and like most people, I’d rather be living life like it is 2019. That’s the final problem with one-way masking: If we can all relate to masking being uncomfortable, why would we suggest that the immunocompromised and disabled be relegated to wearing a mask in perpetuity? Instead, we should all mask when transmission levels are high. We can scale back when they are lower, as I suggested last year in Slate: A traffic light system, denoting red, yellow, and green levels of caution, could help guide mandates and choices. If we share the burden of masking in public spaces, not only will vulnerable people be better protected, but cases will go down faster.
The Millions of People Stuck in Pandemic Limbo: What does society owe immunocompromised people? by Ed Yong:
Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders.
In the past, immunocompromised people lived with their higher risk of infection, but COVID represents a new threat that, for many, has further jeopardized their ability to be part of the world. From the very start of the pandemic, some commentators have floated the idea “that we can protect the vulnerable and everyone else can go on with their lives,” Seth Trueger, who is on immunosuppressants for an autoimmune complication of cancer, told me. “How’s that supposed to work?” He is an emergency doctor at Northwestern Medicine; he can neither work from home nor protect himself by avoiding public spaces. “How am I supposed to provide for my family or live my life if there’s a pandemic raging?” he said. Contrary to popular misconceptions, most immunocompromised people are neither visibly sick nor secluded.
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The danger of the pandemic’s first fearful year still hangs over the heads of many immunocompromised people, even as those around them relax into the security of vaccination. Vaccines should substantially slash the risk of infection and severe illness, but many immunocompromised people barely respond to the COVID shots. At one extreme, about half of organ-transplant recipients produce no antibodies at all after two vaccine doses. Compared with the general vaccinated public, they are 82 times more likely to get breakthrough infections and 485 times more likely to be severely ill. Should they get infected, their risk of hospitalization is a coin flip. Their risk of death is one in 10. “Imagine walking around and being in society and thinking, If you give me COVID, I might have a 10 percent risk of dying,” Dorry Segev, a transplant surgeon at the Johns Hopkins University School of Medicine, told me. His patients are better off than unvaccinated people, “but not by much, despite all we’ve done.”
Other groups of immunocompromised people fare better after vaccination, but Segev estimates that a quarter are still insufficiently protected. And some people with autoimmune disorders cannot be fully vaccinated, because their initial doses led to severe flare-ups of their normal symptoms. Alfred Kim, a rheumatologist at Washington University in St. Louis who specializes in lupus, told me that 5 to 10 percent of his patients experienced these problems; so did two of the people I interviewed, both of whom declined further shots.
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And perhaps worst of all, immunocompromised people began to be outright dismissed by their friends, relatives, and colleagues because of the misleading narrative that Omicron is mild. The variant bypassed some of the defenses that even immunocompetent people had built up, rendered several antibody treatments ineffective, and swamped the health-care system that immunocompromised people rely on. And yet one of Wallace’s patients was told by their sister that no one is dying anymore. In fact, people are still dying, and immunocompromised people disproportionately so. Ignoring that sends an implicit message: Your lives don’t matter.
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Beyond equitable access to treatments, the people I spoke with mostly want structural changes—better ventilation standards, widespread availability of tests, paid sick leave, and measures to improve vaccination rates. Above all else, they want flexibility, in both private and public spaces. That means remote-work and remote-school options, but also mask mandates for essential spaces such as grocery stores and pharmacies, which could be toggled on or off depending on a community’s caseload. Without better, more available treatments or more structural changes, immunocompromised people will still depend on measures that prevent infections. Maintaining them would require, at times, that others make some allowance for their heightened risk. But in terms of what individual people can do for them, the most common request I heard was: Just have a heart. Regardless of your own choices, don’t jeer at us for being mindful of our higher risks, and definitely don’t tell us that our lives are worth less.
In case anyone needed convincing, places like Disney are opening up and listing mask mandates for guests.
At sites that pull in people from all over the world.
It truly feels like we’re never going to get out of this.
Articles I Enjoyed or Found Important This Week
Lauryn England makes history as first Trans Black woman to open a restaurant in Alabama by Miranda Shaffer
Utah Republicans Propose a “Commission” to Analyze Trans Kids’ Bodies by James Factora
Relationship “Green Flags” To Look For When Dating by Abeni Jones
Dive Into the Dazzling Trailer for Discovery+’s “The Book of Queer” by Christopher Rudolph
The Pirate Queen Who Avenged Her Husband’s Death on the High Seas by Julia Métraux
These Women Say Young Living Essential Oils Has Been Taken Over By Satan. Yes, Really. by Stephanie McNeal
5 Expert Tips to Manage Burnout and Find Queer Joy by Naveen Kumar
This Neurodivergent Couple Planned A Sensory Friendly Wedding, And It's Challenging Traditional Wedding Ideas by Maya Ogolini
Buckingham Palace Says The Queen Doesn't Have The Power To Remove Prince Andrew As A Counsellor Of State by Ellie Hall
‘We are making pennies’: For many minor leaguers, unpaid offseasons prove more grueling than the actual seasons by Brittany Ghiroli
Judges side with transgender man in protecting privacy of name changes by Dana DiFilippo
What to Watch: 7 LGBTQ+ Movies to Stream for Black History Month by Michael Cuby
No-Knock Warrants: What Are They and How Are They Used? by Jameelah Nasheed
Union Busting: What Are Some of the Most Common Tactics Employers Use? by Jacqui Germain
FDA clears first smartphone app for insulin delivery by Nicole Wetsman
Study: Many long-term care facilities' surfaces haver disease-causing bacteria by Brian P. Dunleavy
Doctors Are More Likely to Describe Black Patients as Uncooperative, Studies Find by Roni Caryn Rabin
Uber and Lyft are Taking on Healthcare, and Drivers are Just Along for the Ride by Nicole Wetsman
Vulnerable to the Virus, High-Risk Americans Feel Pain as the U.S. Moves On by Amanda Morris and Maggie Astor
Lifting Mask Mandates Endangers Vulnerable People Like Me by Julia Métraux
Pediatricians Who Serve Trans Youth Face Increasing Harassment. Lifesaving Care Could Be on the Line by Madeline Carlisle
The Intersections of Race and Autism: Diagnostic Disparities and Marginalized Existence by Alexis Toliver
To make public health officials more accountable, they should be elected, not appointed by Jay Varma
Do I agree with this? No, not at all. IDK what the answer is, but it’s not this - not in our era of disbelief in science and a lack of science-related information, education, and literacy.
Thanks for reading! If you have feedback or anything you’d like to share, feel free to reach out to me on social media or email (all linked here).
Until next time,
Grayson