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How Donald Trump Caused a Shortage of Lupus Medication

23 October 2024 at 10:00

As Donald Trump campaigns to be a dictator for one day, he’s asking: “Are you better off now than you were when I was president?” Great question! To help answer it, our Trump Files series is delving into consequential events from the 45th president’s time in office that Americans might have forgotten—or wish they had.

Abby Mahler blames Donald Trump and Elon Musk for the challenges faced by people who need hydroxychloroquine for lupus. In the early days of the Covid pandemic, both Trump and Musk promoted the drug as a possible Covid treatment, helping lead to widespread shortages that made it difficult for people like Mahler to obtain the medication she needed. “What Trump did could not have happened without Elon,” Mahler told Mother Jones.

For nearly four years, Mahler, who is based in Los Angeles, has been using TikTok to address misinformation about hydroxychloroquine, which was originally created to prevent and treat malaria, and can be used for a range of autoimmune disorders, including lupus, vasculitis and Sjogren’s syndrome. When they heard that hydroxychloroquine was being prescribed to patients with Covid-19, they were not concerned at first. A drug they already needed and used could also treat Covid-19?

“I remember very vividly joking with my friends,” Mahler said. “Like, ‘Ha ha, I’m going to live forever.'”

On March 16, 2020—just days after Trump declared Covid-19 a nationwide emergency—Musk tweeted a link to a Google Doc which claimed that HCQ, as it’s often known, and a related drug called chloroquine could help fight Covid-19. The Google Doc itself noticeably did not contain any notable statistics. “Maybe worth considering chloroquine for C19,” Musk wrote on Twitter, adding the following day: “Hydroxychloroquine probably better.” (In what turned out to be a darkly accurate bit of foreshadowing, Musk posted another tweet warning that “if we over-allocate medical resources to corona, it will come at expense of treating other illnesses.”)

Days later, a different study was published as a pre-print, meaning it had not yet been peer-reviewed. From a scientific standpoint, the evidence in that study was slim: The paper said that 12 patients benefited from HCQ after seven days, out of the 26 studied (not including the control group), after being diagnosed with Covid-19. The researchers also admitted that five of the patients had to stop taking HCQ after their health symptoms worsened.

Hydroxychloroquine, experts later concluded, wasn’t actually useful for preventing or treating Covid. But as infectious disease specialist Michael Saag wrote in a JAMA Network editorial in November 2020, desperation in the face of an unfolding pandemic had helped create a perfect storm in which the early HCQ research gained traction:

These findings suggestive of possible benefit, along with the desperation of clinicians who were providing care for patients with a potentially fatal disorder for which there was no treatment, undoubtedly contributed to increased use of hydroxychloroquine for patients with COVID-19, despite lack of rigorous evidence for efficacy.

The sudden demand spike for HCQ came alongside a price increase for a key ingredient in the drug. Within a week of Musk’s tweet, Mahler had to try several pharmacies in order to get her HCQ, and had to pay $60, instead of her usual $15. Unlike many other people with lupus, she didn’t have to go without, but she did have to ration over the next few months, occasionally taking a half-dose to cope with the shortage.

Gregory Rigano, an attorney who was one of the authors of the Google Doc Musk promoted, appeared on Laura Ingraham’s Fox News program the very day Musk tweeted it out. Ingraham herself would later to Trump about how great HCQ was for Covid-19 in a private meeting in early April. (Trump’s campaign team and Musk did not respond to recent requests for comment from Mother Jones.) As Saag wrote:

On April 4, the US president, “speaking on gut instinct,” promoted the drug as a potential treatment and authorized the US government to purchase and stockpile 29 million pills of hydroxychloroquine for use by patients with COVID-19. Of note, no health official in the US government endorsed use of hydroxychloroquine owing to the absence of robust data and concern about adverse effects. 

As Stat News reported at the time, Trump even stopped Anthony Fauci, then chief of the National Institute of Allergy and Infectious Diseases, from answering a question on the drug’s efficiency at a White House briefing. In May 2020, Trump proudly announced that he was taking hydroxychloroquine to prevent Covid-19, despite an FDA statement weeks earlier that it should not be used for Covid-19 outside of hospitals or clinical trials.

But in a “twist of irony,” Saag wrote, when Trump really did contract—and was hospitalized for—a serious case of Covid, he “did not receive hydroxychloroquine.”

That makes good medical sense: Trump’s praise for HCQ never included a disclosure that it can have serious side effects, like cardiac issues and changes to eyesight. Many patients on hydroxychloroquine, including myself, have to be tested regularly for HCQ-related vision issues. It’s hard to know just how widespread complications were in 2020.

“As soon as Trump started talking about, it became very obvious that things were gonna get bad quick,” Mahler said. In mid-May, they also had to argue with their health insurance company to avoid paying more than $100 for the medication, which had previously been quite inexpensive.

A survey by the Lupus Research Alliance found that a third of lupus patients reported difficulties filling HCQ prescriptions between March and May 2020. That can mean severe complications, including hospitalization—a frequent area of Covid transmission. Trump’s claims about hydroxychloroquine weren’t just another case of buffoonery, Mahler says, but a source of real harm in people’s lives.

@babs_zone Time to hold some shills accountable. #HCQRewind #HerStory #CrowdCheers #hydroxychloroquine #DisabilityJustice #lupus #hcq #disabilitytiktok #fyp ♬ Drive Forever – Remix – Sergio Valentino

Even outside the US, HCQ shortages became more common. A February 2021 study found new anxieties among lupus patients in Europe about such shortages during the first year of the pandemic.

I’m now on hydroxychloroquine myself, and though I wasn’t at the time, I remember watching in fear as rumors spread that the anti-inflammatory colchicine, which I was taking, would be Trump’s next proposed Covid treatment. I remember asking my then-rheumatologist if she was concerned that would happen. She told me that there’s no evidence it would help, but there wasn’t much evidence that HCQ would help either. Trump never embraced colchicine, but hydroxychloroquine shortages struck a nerve.

In mid-June 2020, the FDA ended its study on HCQ and Covid—results showed it wasn’t helping. Weeks later, Trump called hydroxychloroquine “a cure for Covid” and a reason not to wear a mask. Trump was very much wrong, and high quality masks do help prevent the ongoing spread of Covid-19.

As Saag, the infectious disease expert, concluded:

The clear, unambiguous, and compelling lesson from the hydroxychloroquine story for the medical community and the public is that science and politics do not mix. Science, by definition, requires diligence and an honest assessment of findings; politics not so much.

Tens of Thousands of People Are Dying on the Disability Wait List

11 October 2024 at 20:05

Three years ago, after developing Long Covid, 62-year-old Martha applied for Social Security Disability Insurance, which provides a modest monthly benefit to aging and disabled adults. Martha has no health insurance, which prevents her from getting the medical treatment she needs, and is homeless.

On Thursday, when she asked Vice President Kamala Harris about the issue at a town hall hosted by the Spanish-language news network Univision, she still hadn’t received a decision.

In the twelve-month stretch from October 2022 through September 2023, 30,000 people died while waiting for federal disability determinations, according to Social Security Commissioner Martin O’Malley. Martha asked Harris what she would do as president for people, like herself, who are waiting for disability decisions while in desperate need of health insurance.

Delays in those decisions, driven in part by understaffing and a Covid-related rise in disability rates, have driven the typical wait time from four months in 2019 to seven months today, often coupled with the need to appeal an initial rejection, which can take years. The processing times represent a mounting crisis for the more than 1 million Americans who apply for disability in a given year.

Harris, starting off on track, highlighted her recent push for Long Covid to be recognized under the Americans with Disabilities Act. But the vice president didn’t acknowledge the issue of wait times for federal disability benefit determinations, talking instead about how medical debt impacted credit scores.

Harris’ push to incorporate Long Covid into the ADA is welcome. Latino people are the likeliest of any racial group to report having Long Covid, according to Census data; many also participate in SSDI, and her Univision non-answer on wait times was eyebrow-raising.

But a Long Covid–friendly ADA doesn’t mean any change in Social Security practices, which are separate. Securing disability income is a much more complex, demanding process than securing ADA accommodations (which can be hard enough). Separate action is needed on both—and within Harris’ grasp, should she land in the White House.

this is a very emotional town hall. Harris takes a question from a homeless woman whose life was wrecked by long covid about what she'll do for people like her pic.twitter.com/O65A3GJIX3

— Aaron Rupar (@atrupar) October 11, 2024

That’s not to say that Democrats have made no moves to address challenges around Long Covid and Social Security disability delays. In August, a Senate group including Sen. Tim Kaine (D-Vir.), Sen. Ed Markey (D-Mass.), Sen Tammy Duckworth (D-Ill.), and Sen. Bernie Sanders (I-Ver.) sent O’Malley a letter asking a similar question: what was the Social Security Administration doing to address the barriers that applicants with Long Covid face? They have yet to receive a response—at least publicly.

Tens of Thousands of People Are Dying on the Disability Wait List

11 October 2024 at 20:05

Three years ago, after developing Long Covid, 62-year-old Martha applied for Social Security Disability Insurance, which provides a modest monthly benefit to aging and disabled adults. Martha has no health insurance, which prevents her from getting the medical treatment she needs, and is homeless.

On Thursday, when she asked Vice President Kamala Harris about the issue at a town hall hosted by the Spanish-language news network Univision, she still hadn’t received a decision.

In the twelve-month stretch from October 2022 through September 2023, 30,000 people died while waiting for federal disability determinations, according to Social Security Commissioner Martin O’Malley. Martha asked Harris what she would do as president for people, like herself, who are waiting for disability decisions while in desperate need of health insurance.

Delays in those decisions, driven in part by understaffing and a Covid-related rise in disability rates, have driven the typical wait time from four months in 2019 to seven months today, often coupled with the need to appeal an initial rejection, which can take years. The processing times represent a mounting crisis for the more than 1 million Americans who apply for disability in a given year.

Harris, starting off on track, highlighted her recent push for Long Covid to be recognized under the Americans with Disabilities Act. But the vice president didn’t acknowledge the issue of wait times for federal disability benefit determinations, talking instead about how medical debt impacted credit scores.

Harris’ push to incorporate Long Covid into the ADA is welcome. Latino people are the likeliest of any racial group to report having Long Covid, according to Census data; many also participate in SSDI, and her Univision non-answer on wait times was eyebrow-raising.

But a Long Covid–friendly ADA doesn’t mean any change in Social Security practices, which are separate. Securing disability income is a much more complex, demanding process than securing ADA accommodations (which can be hard enough). Separate action is needed on both—and within Harris’ grasp, should she land in the White House.

this is a very emotional town hall. Harris takes a question from a homeless woman whose life was wrecked by long covid about what she'll do for people like her pic.twitter.com/O65A3GJIX3

— Aaron Rupar (@atrupar) October 11, 2024

That’s not to say that Democrats have made no moves to address challenges around Long Covid and Social Security disability delays. In August, a Senate group including Sen. Tim Kaine (D-Vir.), Sen. Ed Markey (D-Mass.), Sen Tammy Duckworth (D-Ill.), and Sen. Bernie Sanders (I-Ver.) sent O’Malley a letter asking a similar question: what was the Social Security Administration doing to address the barriers that applicants with Long Covid face? They have yet to receive a response—at least publicly.

Rep. Ilhan Omar to Introduce Major Long Covid Bill

27 September 2024 at 12:00

On Friday, Minnesota Rep. Ilhan Omar (D-Minn.) will introduce a potentially groundbreaking piece of federal legislation in the House of Representatives—one allocating $10 billion in funding to fight Long Covid, the increasingly widespread, chronic condition that follows many Covid infections. The Long Covid Research Moonshot Act is a companion bill to one that Sen. Bernie Sanders (I-Vt.) introduced in the Senate in August.

“Long Covid is a silent health crisis impacting over twenty-three million Americans, including one million children,” Omar said in a statement to Mother Jones. (Rep. Ayanna Pressley, D-Mass., is the co-lead on the legislation.) “I’m proud to lead this effort in the House to recognize Long Covid as the public health emergency that it is and invest in countering the effects of this terrible disease.”

“Long Covid is a silent health crisis impacting over twenty-three million Americans, including one million children,” Rep. Omar said.

Long Covid symptoms often include debilitating fatigue, and many people found to have it have also been diagnosed with conditions like myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome. ME/CFS, which is characterized by post-exertional malaise, is known to be associated with other infectious diseases—the CDC states that about 1 in 10 people infected by the Epstein-Barr virus (which 95 percent of adults get) experience ME/CFS-like symptoms. And research shows that repeated Covid infections increase people’s risk of developing Long Covid.

The Long Covid Research Moonshot Act would establish a new research program within the National Institutes of Health to better understand the condition (and others, like ME/CFS and POTS) with its own database, advisory board, and a new grant process to accelerate clinical trials. It would fund public health education and comprehensive care clinics dedicated to Long Covid, especially in underserved, disproportionately affected communities—and would require any new treatments developed through the act to be reasonably priced and accessible to more patients.

“We know that the only path forward out of this generational crisis is to fund research that builds on our expertise about infection-associated chronic conditions like ME/CFS, and that is accountable to the patient community for delivering results, including clinical trials,” said Laurie Jones, executive director of patient advocacy group #MEAction. “The Long Covid Research Moonshot Act lays out a comprehensive plan for doing just that.”

Megan Carmilani, the president of Long Covid Families, believes the bill would fund vital research into how Long Covid presents in young people, a focus of her organization, and called on Congress “to prioritize the health and wellbeing of our nation’s children by supporting this bill as well.”

The Long Covid Research Moonshot Act is not Congress’ first attempt to fund such treatment. In December 2020, Congress allocated $1 billion to NIH to study the long-term impacts of Covid, and boosted that funding by more than $500 million this year.

But a 2022 attempt, Pressley’s TREAT Long Covid Act, did not make it out of committee—despite having 41 co-sponsors, including Rep. Omar. That act, also unsuccessfully reintroduced in 2023, would have made direct grants to clinics that treat Long Covid and associated conditions.

Communities of color and disabled people have been disproportionately harmed by Long Covid. Black and Latino people, for instance, are more likely to develop Long Covid symptoms than white people. Disabled people are twice as likely to do so as non-disabled people. A February 2023 analysis published by JAMA Network found that people with Long Covid symptoms, which can include severe fatigue and issues with cognitive function, are more likely to be unemployed. The only way not to get Long Covid is to avoid Covid infections, underscoring the importance of mask-wearing and high-quality air filtration.

“We must take bold action to help Americans suffering from Long Covid,” Omar said in her statement.

You Can Order Free Covid Tests Again

26 September 2024 at 18:39

The coronavirus is, unfortunately, still here.

But here’s some help: As of Thursday, the federal government is, again, providing up to four free rapid tests per household. They’ll begin mailing them next week. The government will also pay for shipping the tests. You can order the tests to be delivered to your home online or by calling 1-800-232-0233.

One of the available tests is intended to be accessible for people who are blind or have low vision or manual dexterity, which you can order at a separate webpage or by calling the aforementioned number and following the prompts.

The Food and Drug Administration has said at-home rapid tests can detect the presence of Covid-19 up to 80 percent of the time someone is infected. New research, though, suggests that as peoples’ immunity has built up, it can take longer—up to four days after the onset of symptoms—to get a positive result from a rapid antigen test even if you do have the virus, as Time recently reported. Researchers say if you have symptoms, it’s best to continue testing—48 hours apart, up to three times—and not assume you’re virus-free based on one negative result soon after symptoms start.

The effort marks one of the federal government’s few remaining Covid-19 mitigation strategies, even as the virus continues to spread and mutate. The latest variant, dubbed KP.3.1.1, accounts for the majority of infections as of this month, according to estimates from the Centers for Disease Control and Prevention. Last month, the FDA approved new Covid-19 vaccines to target the latest variants, which are available at your local pharmacies.

The Department of Health and Human Services and the US Postal Service say they have distributed more than 900 million free tests since 2021.

You Can Order Free Covid Tests Again

26 September 2024 at 18:39

The coronavirus is, unfortunately, still here.

But here’s some help: As of Thursday, the federal government is, again, providing up to four free rapid tests per household. They’ll begin mailing them next week. The government will also pay for shipping the tests. You can order the tests to be delivered to your home online or by calling 1-800-232-0233.

One of the available tests is intended to be accessible for people who are blind or have low vision or manual dexterity, which you can order at a separate webpage or by calling the aforementioned number and following the prompts.

The Food and Drug Administration has said at-home rapid tests can detect the presence of Covid-19 up to 80 percent of the time someone is infected. New research, though, suggests that as peoples’ immunity has built up, it can take longer—up to four days after the onset of symptoms—to get a positive result from a rapid antigen test even if you do have the virus, as Time recently reported. Researchers say if you have symptoms, it’s best to continue testing—48 hours apart, up to three times—and not assume you’re virus-free based on one negative result soon after symptoms start.

The effort marks one of the federal government’s few remaining Covid-19 mitigation strategies, even as the virus continues to spread and mutate. The latest variant, dubbed KP.3.1.1, accounts for the majority of infections as of this month, according to estimates from the Centers for Disease Control and Prevention. Last month, the FDA approved new Covid-19 vaccines to target the latest variants, which are available at your local pharmacies.

The Department of Health and Human Services and the US Postal Service say they have distributed more than 900 million free tests since 2021.

Free Rein and No Guidance: Long Island’s Cop-Enforced Mask Ban Isn’t Going Great

5 September 2024 at 21:03

When New York’s Nassau County signed the first county-level mask ban into law in August, its deputy police commissioner, Kevin Smith, told local news that training was “being conducted [in] the department, which means across ranks.”

But that has not happened, according to the New York Civil Liberties Union. Through an information request reviewed by Mother Jones, NYCLU, a state affiliate of the American Civil Liberties Union, requested policies and training materials used to instruct the county’s police on enforcing the ban. In return, the group received a three-page legal bulletin on the “Mask Transparency Act,” and a six-slide presentation, including a title page, briefly going over the new law. The presentation reiterates the bulletin’s explanation of the law, as well as saying police officers still need to follow Fourth Amendment protections against unreasonable search and seizure—but there is little else.

“There’s none of the sort of type of training and guardrails you would expect to see in a police procedure or in a training module around how you interact with members of the public,” said Beth Haroules, a senior staff attorney at NYCLU.

The very brief materials also do not address people’s rights in protecting their health information from police, which also underscores why police officers cannot independently determine whether someone is wearing a mask for health reasons. “You’re not allowed to interrogate somebody about their private health information, or family member’s or loved one’s health information,” Haroules continued, “including whether or not you’re just Covid cautious,” something county law enforcement seems to have overlooked altogether.

The Nassau County Police Department did not respond to Mother Jones’ request for comment on the extent of its training.

The law allows Nassau County police four reasons to question people about their mask-wearing—among them, when they are gathered in a public space with other people who are wearing masks. Haroules notes that this seems to clearly target people at protests, especially recent waves of pro-Palestinian protests, some of whom may be wearing masks for health reasons—but the implications for who the ban could suddenly impact would be much wider.

“You could be waiting at a bus stop at Nassau County with a mask on, and then, suddenly, three or four more people show up,” Haroules said. “You’re all subject to arrest or interrogation as to whether or not you have a right to wear that mask.”

As Mother Jones previously reported, fear of being interrogated by police over masking has led Disability Rights New York to sue Nassau County in federal court on behalf of two disabled residents.

Since the mask ban law was enacted, two people have been charged with misdemeanors for violating it, punishable by up to a year in jail and a $1,000 fine. In both cases, Haroules says, “there probably wasn’t probable cause to arrest either gentleman.”

Haroules agrees with concerns that people of color will be disproportionately targeted for wearing masks. The Nassau County Police Department, Haroules says, “has a documented history of inappropriate interactions with people of color.” (It also has a troubled record on other fronts, including around residents’ civil rights.)

Choosing to wear masks, as Haroules told Mother Jones she herself continues to do on public transportation, is an individual decision which mask bans threaten. Having other community members “enforcing the mask ban by threatening to call police,” Haroules says, “really suggests that there’s a societal problem.”

The Covid Vaccine Just Got a Lot More Expensive—If You’re Uninsured

31 August 2024 at 18:48

All but three US states have very high or high levels of Covid-19 in their sewage right now, according to the CDC. Due to a drop in efforts to count individual cases, that data is the most accurate way to paint a picture of the current extent of Covid cases—and it’s bad.

In addition to wearing respirators, getting the updated Covid vaccine (mRNA shots were approved last week, and the Novavax vaccine this week) is an important way to reduce one’s chance of getting the infectious disease. Even if a person contracts it, the shot will reduce their risk of death and developing Long Covid.

But for uninsured and underinsured Americans, the vaccine has just gotten significantly more costly. On August 22, the CDC sunsetted its Bridge Access Program, which provided free Covid vaccines to 1.5 million Americans over the past year. A CDC spokesperson told Mother Jones that the sunsetting was a consequence of the new 2024-2025 vaccines being approved—which meant the 2023-2024 vaccines could no longer be administered. But many people did not know that the program would only cover the vaccine approved last year—just that it would end in August, potentially after the new shots became available. The CDC’s page on the program, which was live until some point Friday, did not clarify any of this information.

“For every step that you add in the process of trying to get a vaccine, you’re going to lose people.”

A rhetorical staple of the Biden administration is that it’s ensured people have the tools to fight Covid—but that is not the case for people unable to afford the updated vaccine out-of-pocket, which typically costs around $200.

Elizabeth Jacobs, an epidemiologist and professor emeritus at the University of Arizona, has studied the reasons why people do not get Covid-19 boosters. One reason, Jacobs says, is the logistics and challenges of getting the vaccines. 

“For every step that you add in the process of trying to get a vaccine, you’re going to lose people,” Jacobs said.

Even before the end of the Bridge Access Program, getting vaccines has not always been easy. One person who spoke to Mother Jones said that he had to explain how the Bridge Program worked to pharmacists before he could get vaccinated for free.

The CDC, however, did announce that it has allocated $62 million for state and local health departments to buy vaccines for uninsured and underinsured people. However, the current surge and delays in implementation means people may fall by the wayside. 

“I do have faith that $62 million will be used well to provide vaccines,” says Emory University epidemiology professor Jodie Guest. “Unfortunately, we just don’t have the details for how that will be done yet.” 

Guest also notes that the up-front cost of subsidized vaccines is less of a burden on the healthcare system than a spike in the number of people severely ill with Covid. It is hard to know just how many people are currently hospitalized with Covid complications, as hospitals have not been required to report cases to the federal government since May. But the requirement to report respiratory viruses in hospitals will resume on November 1. 

Since early in the pandemic, research has highlighted the risks of severe illness that low-income people, who are more likely to have chronic health conditions, face with Covid. These risks remain, and while it’s important that people with Medicare and Medicaid will be able to get updated vaccines, so should low-income people without health insurance.

“Vaccines are only as good as how vaccinated our immediate communities are.”

Children whose guardians are uninsured and underinsured will still be able to get vaccinated for free through the Vaccines for Children program, initially established by Congress in 1993 to make sure more kids were being vaccinated against measles. Chrissie Juliano, the executive director of the Big Cities Health Coalition, says that the ending of the Bridge Access Program underscores the “need for a permanent Vaccines for Adults program.” The Biden administration has proposed funding a Vaccines for Adults program in its proposed budget for the next fiscal year, but Congress could still reject it. In the meantime, Guest also recommends that people search for coupons at pharmacies that could bring down out-of-pocket costs. 

“Vaccines are only as good as how vaccinated our immediate communities are,” Juliano said. “Vaccines protect us when we individually get it, but we really depend on our neighbors, our family, our friends [and] our classmates to also be fully vaccinated.”

While Covid-19 vaccines can reduce transmission, they are not perfect yet, which highlights the importance of wearing N95 and KN95 masks during surges, especially in medical settings, while traveling, and in other crowded indoor settings.

Jacobs finds it frustrating that masking is no longer promoted by public health agencies as it has become further politicized. “It is an established fact that respirators or high-quality masks reduce your risk significantly of becoming infected,” Jacobs said.

A Long Island County Banned Masks, and Disabled People Are Suing

23 August 2024 at 20:20

Last week, Nassau County, on New York’s Long Island, became the first county in the US to ban the public wearing of masks—with very vague health exemptions—since the start of the Covid-19 pandemic. The Nassau ban follows a similarly controversial statewide mask ban in North Carolina that took effect in June.

Several concerns have been raised about Nassau’s mask ban, including that police officers—not experts in public health or medicine—are tasked with determining whether an individual is wearing a mask for valid health reasons. But another is that the pandemic is not over, and wearing medical masks while grocery shopping or even at a protest is meant to limit exposure to the disease—and some residents expect a ban to lead to harassment by local anti-maskers.

The county’s move has prompted the first class-action lawsuit against a mask ban, filed Thursday in federal district court by Disability Rights New York against Nassau County and county executive Bruce Blakeman on behalf of two anonymous residents.

“This mask ban poses a direct threat to public health and discriminates against people with disabilities,” said Timothy A. Clune, the group’s executive director, in a press release.

One of the residents, who lives with cerebral palsy and asthma, said they were stopped and questioned by other residents after the ban was passed—even before it was enacted—and, according to the complaint, now “fears that they will be arrested…because there is no standard for the police to follow to decide if they meet the health exception.”

The other resident represented in the complaint, who masks due to various immune conditions, the complaint says, is now “terrified to go into public wearing a mask.”

Both complainants say that masking has enabled them to participate in public life as disabled people during the ongoing pandemic. Disability Rights NY argues in the suit that the ban as written is unconstitutional, and violates both the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, both key items of federal civil rights legislation, by denying disabled people access to their own communities.

“Local laws that abrogate or curtail rights conferred by federal law are…rendered invalid,” the complaint reads.

Given that Covid can itself disable people, Jason Cohen, a neurologist who lives in Nassau, has major concerns about how the mask ban will play out.

“I care for many patients who have brain fog from Covid and many more who are at higher risk of brain damage from Covid,” Cohen said. “Anything that discourages masking among those who want to mask is a travesty and public health disaster.”

Cohen also says that governments “should not force people to disclose their personal medical information to police in order to negotiate their way out of being accused of a crime.”

Some disabled people nevertheless have concerns about the suit itself. Ngozi, a Black disabled person who lives just over the county border in Queens, is concerned that it will end in “some type of negotiation with the state that results in keeping the law intact,” which would maintain the risk of racial profiling.

“I do not have faith in the state,” Ngozi said. “A lawsuit will not resolve the threat of mask bans anytime soon.”

Disability Rights New York is requesting a declaratory judgment that Nassau County’s mask ban violates federal law, as well as a restraining order. The complaint in its entirety can be read below.

Tim Walz Is Leading the Way on Long Covid Funding

6 August 2024 at 21:39

There are more than 400,000 people with Long Covid in Minnesota—the home state of Democratic vice presidential nominee Gov. Tim Walz—according to the state’s health department. A post-viral illness with serious impacts to quality of life and ability to work, Long Covid is also a workers’ rights issue: not being able to rest during and after a Covid infection makes people more likely to develop it.

Under Walz’s leadership, in May of last year, Minnesota became the first state to dedicate funding to Long Covid and associated conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome. Billy Hanlon, the Minnesota ME/CFS Alliance‘s director of advocacy and outreach, says that Walz was instrumental in pushing for the legislation.

ME/CFS and POTS are not new conditions, but patients with both have long experienced their symptoms being dismissed by physicians. A 2016 study estimates that around one in four people with ME/CFS are largely confined to bed by their symptoms.

In May '23, MN became the first state in the US to pass dedicated funding for Long COVID & related conditions (ME & POTS), w/Gov. Walz instrumental in this legislation

'Gov. Walz budget proposal seeks $6.3M for emerging long COVID crisis' [March '23]https://t.co/qcF2cQHQf3https://t.co/UWBrsdkgW9

— Billy Hanlon (@bhanlon15) August 6, 2024

Now, with Walz a prospective Vice President, Long Covid and related conditions may have a more highly placed advocate than ever before—with a demonstrated record of working to combat this post-infectious disease. Hanlon says a federal response “should include increased baseline funding to the NIH and federal health agencies to support the expedition of clinical interventions.”

“As Vice President, we hope and urge Gov. Walz to continue to prioritize this crisis that is impacting over 20 million Americans and only growing,” Hanlon told Mother Jones. “It will take our highest levels of leadership at the federal level to respond with the urgency that this crisis demands.”

Walz is not the only pro-labor politician pushing for more funding to address Long Covid: just last week, Vermont Sen. Bernie Sanders introduced a bill that would allocate $1 billion annually across a decade for Long Covid–related research.

Currently, the only way to completely avoid Long Covid is to not get Covid-19, which reinforces the importance of mask-wearing and adequate air filtration. But with more research funding, doctors may be able to develop a better understanding of how to manage Long Covid symptoms—which can include post-exertion malaise, heart palpitations and hives—more quickly. “Just as COVID-19 is not going away,” Walz wrote in his 2023 funding proposal, “Long COVID is not going away.”

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