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Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore

By Alice Wong / 2022-04-10
Posted in

Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore

 

Anna Hamilton

 

As a multiply disabled person, over these last two years I have come to an uncomfortable conclusion: I can’t trust nondisabled people, as a group. 

Like many people in the disability community, I am high-risk according to the Center For Disease Control’s (CDC) list of health conditions that put people at risk for complications or death

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Ending the Evusheld “Hunger Games”

By DNW Contributors / 2022-03-30
Posted in

Secretary Beccara –

As 1 of the 7 million immunocompromised people living in the U.S., I am appalled at the hoops I am having to jump through to try to get my Evusheld injections.

Having been in my home now for almost 2 years, without going to the grocery store, seeing my friends in person, changing my job to my home, and not visiting restaurants, sporting events, or any of my other usual “life” activities, things are getting pretty old.


Laurie Stein is a life coach and lives in Dallas, Texas.


I am quite shocked at how long it has taken for this country to come up with some sort of treatment for the most vulnerable population to be able to move around outside the “bubble” of our homes.

I don’t feel like a human, I feel like a dog in a crate.

And now, I’m having to participate in a “Hunger Games” type of scenario to try to get this Evusheld injection which I hope will work to protect me from this virus.

How ridiculous we look as a country; this is not leadership and I do not feel proud.

I do not align myself with any political party, and I have lost faith in what our government can do. It’s a very sad and desperate time to see what is happening with the leaders of my city, my state, and my country.

I used to see my country as the world leader, no longer. And as someone who has traveled and lived outside of the U.S., I used to be proud to come home to my home base.

This has been an embarrassing time, and to watch how this pandemic has been handled, not to mention, how the immunocompromised people have been completely “forgotten” has been an ugly movie to watch.

My disappointment can not be put into words. And as I advocate and tirelessly work for myself and my health and my Evusheld injections, I worry about all of those other 6 million people who don’t even know how to begin to advocate for themselves and their health.

What a disaster!

I feel invisible, and I hope the leadership is ashamed of themselves.

Laurie Stein

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Beyond the Vaccine – protecting our immunnocompromised from Covid with Evusheld

By DNW Contributors / 2022-03-15
Posted in

What would you do if the Covid vaccine didn’t work for you? There are between 7 and 9 million Americans with weakened immune systems, in some cases, the vaccine literally doesn’t work. Enter Evusheld which provides up to 6 months of protection… if only you can find it.

Twenty years of living with Multiple Sclerosis as a nurse

Almost twenty years ago, in July 2002, I was diagnosed with multiple sclerosis (MS). Shortly after my diagnosis I enrolled in nursing school, and for the last 15 years I’ve been a registered nurse working at the bedside in an acute care hospital. Today I work in the operating room of a Level I trauma center in the San Francisco Bay Area.


Jennifer Spring is a nurse living and working in the San Francisco Bay Area


When I was diagnosed, disease-modifying therapies (DMTs) for MS were limited in number and effectiveness. Although there is still no cure, today a person with MS can choose from many different DMTs, all of which are effective at slowing the progression of the disease. Four years ago, the neurologist I see at a local hospital recommended that I begin rituximab infusions every six months to manage my MS.

Fighting MS, weakening my immune system

Rituximab is a B-cell depleting therapy; this means it targets and destroys B cells in the recipient’s body. Since B cells are responsible for creating antibodies, failure to respond effectively to vaccines is a known side effect of rituximab treatment.

I was aware of this when I began treatment but I didn’t think too much about it. After all, I’d received all my childhood vaccinations and as part of enrolling in nursing school I was required to have blood tests to prove I still had immunity. There were no recommended vaccines for adults in my age group beyond a yearly flu shot.

Covid, Nursing, and Rituximab

The novel coronavirus SARS-CoV-2 began to spread around the world two years after I started rituximab, reaching pandemic status with dizzying speed. At the hospital, we did what we could to protect ourselves. We reused PPE. We washed our hands raw. We isolated ourselves from our families and friends so we didn’t inadvertently infect them. We updated our advance directives so our end-of-life wishes would be known in case we became critically ill, and we hoped against hope for a vaccine that would save us all.

That vaccine arrived astonishingly quickly. My coworkers and I received our first doses in late December 2020 and we were giddy with hope. I remember thinking, “This is how the pandemic ends. Everyone will get vaccinated and we’ll all get our lives back.”

We all know that’s not how things worked out. At the beginning of February I received my fourth dose of covid vaccine, as recommended by the CDC. Three weeks later, I had an anti-spike-protein antibody test that showed what I always suspected would be true: I had zero antibodies. Without B cells, my body was unable to respond to the vaccine. I was nowhere near as protected against covid as the rest of my coworkers, and I felt like a sitting duck as the incredibly transmissible Omicron variant arrived.

A sitting duck, a new hope – Evusheld

The FDA issued an emergency use authorization in December for a new pre-exposure prophylactic antibody drug called Evusheld that was specifically meant to provide antibody protection against covid-19 for immunocompromised people like me. I contacted my neurologist immediately, and kept doing so every couple of weeks, to ask how to get it. I anticipated being able to receive it quickly given my level of immunosuppression from rituximab and my extremely high risk of acquiring covid at work.

How the (heck) can I get Evusheld?

My neurologist didn’t have any information about Evusheld availability. Nor did he know which patients would get it, how patients would be prioritized given its limited supply, or when it might be my turn. He promised to look into it, but every time I contacted him for an update he had no new information.

We went back and forth like this for almost three months. At the end of February after I’d sent him yet another message asking about Evusheld, he replied with the first piece of new information since the EUA: he was required to get an infectious disease consult before any of his eligible patients would be able to get Evusheld.

I felt sick to my stomach when I read his message. There was a global pandemic! Infectious disease teams everywhere were worn thin from the work of responding to it. How would involving the busiest people in the hospital somehow make this process more efficient? How could more bureaucracy get doses to the people who needed it?

Bad news – double Evusheld dose required

The very next day the FDA updated the EUA for Evusheld, doubling the dose to be given to each patient. This effectively halved the number of available doses; adequately treating each patient would now require using twice as much of the drug.

More bad news – no masks, no vaccines, no problem?!??!

Mask mandates and vaccine requirements were being lifted all over the country and people talked about the end of the pandemic, even though more than 2,000 people like me were still dying of covid every day. The same people who clapped for me every evening at 7:00 pm and called me a hero were no longer willing to do simple things like wear a mask in public places in order to keep me safe. I felt what can only be described as despair.

And then came Rob and his amazing Evulsheld locator

Enter the incredible Rob Relyea and his searchable database of Evusheld sites. Unlike the official Department of Health and Human Services covid-19 therapeutics locator website which states in bold text that the site is for healthcare provider use only and that “patients should not contact locations directly unless instructed to do so by their healthcare provider,” Rob’s database was meant to be a resource for immunocompromised people who had been left to fend for themselves.

I found Evusheld

Through Rob’s database I found a freestanding infusion center near me that had doses available. I was able to make an appointment online. All I needed from my doctor was a signed referral form, which he was very happy to provide. Finally, after three months of legwork and self-advocacy, I got Evusheld on March 8th. Back in my car after the appointment, I had a little cry from the relief.

Despite the fact that I’ve been a patient there for eleven years, not once did anyone at my insurance company reach out to me about Evusheld. For three of those eleven years I was an employee of that company, working as staff nurse at the same facility at which I received my care. Yet everything I knew about Evusheld came from my own personal hunt for information and access.

… but what about everyone else?

I’ve been a nurse for 15 years. I work in a big, academically-affiliated, Level I trauma center. I have excellent health literacy and an insider understanding of how health care works. I have a huge personal and professional network of health care contacts. And I am the very definition of privilege: I’m white. I’m college-educated. I speak fluent English. I’m employed in a well-paying job with benefits that include excellent health insurance. My chronic illness is well-managed. I had the free time to devote to this cause.

Imagine for a moment what this experience must be like for people who don’t have these privileges. Imagine adding illness, ableism, racism, homophobia, transphobia, or fear of deportation to this bewildering and exclusionary process.

There are so many people out there who should have access to this potentially life-saving treatment and many of them don’t even know it exists. A better, more easily-navigable process for connecting vulnerable patients to Evusheld is critical as mask and vaccine mandates make public spaces increasingly less safe for the most vulnerable. Real, valuable lives depend on it.

Healthcare providers, your patients need you. Reach out to them. Today. Now. I know I sure could have used some help.

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… now is the time to help immunocompromised people with Evusheld

By DNW Contributors / 2022-02-01
Posted in

We were all thrilled when the vaccines were rolled out and could protect people from the Covid-19 virus. Now it is time to help the rest of the people in the country that are immunocompromised and cannot get the vaccine or the vaccine is not enough protection. This is urgent! Why is the government not purchasing enough Evusheld to distribute to all of us folks? I know that like so many others,

I have been locked in my house for 23 months.

Our lives have been put on hold. I long to hug my granddaughters and see my 92 year old mother in law. Time does not stand still.

Thank you for your attention to this matter.

Marci Cohen

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Disabled Deaths Are Not Your “Encouraging News”

By Alice Wong / 2022-01-26
Posted in

Disabled Deaths Are Not Your “Encouraging News”: Resisting The Cruel Eugenics of Comorbidity Rhetoric

 

Adam Hubrig

 

“Comorbidities” is a weaselly, cruel, violent word.

This word, this concept, of comorbidities, keeps surfacing in even my most mundane conversations with colleagues, friends, and family. Conversations that are mostly happening on the phone, Zoom, or through messaging because I need to be safe. Because I’m one of these immunocompromised people in the “four or more” comorbidities

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Evusheld – COVID protection for the immunocompromised

By DNW Contributors / 2022-01-18
Posted in

What is Evusheld?

Evusheld is monoclonal antibody prophylaxis for immunocompromised patients who did not get adequate COVID protection from the vaccines. It is developed by AstraZeneca and has received emergency use authorization from the FDA. Evusheld contains two long-lasting monoclonal antibodies, tixagevimab and cilgavimab that target surface spike protein of SARS-CoV2. It is designed to prevent COVID and not as a treatment.

Evusheld is NOT an alternative to a COVID vaccination – get vaccinated!

Evusheld is given as an intramuscular injection to adults and children at or above 12 years (weighing at least 40 kg) who:

  • Do not have COVID or recent exposure to COVID

and

  • Are immunocompromised due to medical conditions or receiving immunosuppressive medications, and did not mount an adequate response to COVID vaccination

or

  • Cannot receive any of the COVID vaccines due to a history of severe allergic reaction to the vaccines or their components

For these individuals, Evusheld should provide COVID protection for about 6 months.

Preliminary studies suggest that Evusheld provides some coverage against the Omicron variant of COVID.

Evusheld is not an alternative to vaccination for those who do not meet the above criteria.

How do I get a Evusheld?

  1. Get a note from your doctors saying that you are eligible for #Evusheld,
  2. Check availability at rrelyea.github.io/evusheld/
  3. Contact the centers with doses persistently until you get the shots.
  4. Be persistent.

Q&A

Do you have any tips for getting to the right person at these places? Do you go to scheduling or another resource that could assist (understanding it may be different for each)?

Pharmacy or if they have an infusion center

How can I help everyone who needs Evusheld get it?

You can sign the petition at Change.org or Resist.bot

You can send a letter to US HHS Secretary Becerra with optional updates on Evulshed.

Does Evulsheld provide protection against the Omicron variant of COVID-19?

Evusheld is a combination of tixagevimab and cilgavimab – according to this study (Tixagevimab and Cilgavimab (Evusheld) for Pre-Exposure Prophylaxis of COVID-19), it is not great. But so far break-through infections are not common. It is too early to say. The advantage of Evusheld  is that it is a combination of two antibodies against the COVID spike proteins and so is more likely to be effective against different variants.

Testimonials

5 COVID Vaccines and No Immunity – My husband was treated with Rituximab this winter for a rare B-cell lymphoma. He has had 5 vaccines (2 before his treatment and 3 in the months following) and still has no neutralizing antibodies to the COVID virus….

We Must Protect the Most Vulnerable from COVID – While this is excellent news, the new agreement still falls far short of the doses needed to provide protection for the 7 million people who are immune compromised in the U.S. Furthermore, like vaccines, this treatment will likely have to be repeated (studies suggest every 6 months). An ongoing supply will be needed…

I got Evusheld. I took lots of calls, faxing of doctors’ notes…etc. I am grateful to @UMMC. Immunocompromised [patients] should not have to plea, hope for winning the Evusheld lottery, search everywhere for living-saving meds.

 

“…Our analysis indicates that ≈6% of the enrollees in a large US claims database had immunosuppressive conditions … which might represent some 12 million US persons if these rates are similar in the general US population “

Analysis of MarketScan Data for Immunosuppressive Conditions and Hospitalizations for Acute Respiratory Illness, United States

 

The government has fulfilled its promise to make vaccines available to everyone whose bodies can make good use of them. But now it must also cover everyone who cannot benefit from the vaccines.” @slsatel https://thedispatch.com/p/dont-forget-the-immunocompromised

It shouldn’t have to take an MD, tons of phone calls, and persistence to get the medicine you need.

Resources

COVIDSAFE.FYI – a great, totally unofficial resource that can help you find Evusheld, vaccines, and other COVID related information.

Immunocompromised Times newsletter.

FDA Fact Sheet for Healthcare providers

FDA Fact Sheet for Patients, Parents, and Caregivers

Online resource of current availability and providers – LIVE DATA

Prioritization and Scarce Resource Allocation of Evusheld for COVID19 PreExposure Prophylaxis in Certain High Risk Individuals (Michigan)

National Infusion Center Locator (for COVID antibody treatments – currently DOES NOT include Evusheld)

Allocation Criteria for Evusheld for Prevention of COVID (Michigan Medical)

Ethical Frameworkfor Allocation of Monoclonal Antibodies during the COVID-19 Pandemic – Minnesota Department of Health (at time of retrieval does not address Evusheld directly)

How Many Adults Are at Risk of Serious Illness If Infected with Coronavirus? Updated Data

Evusheld offers another layer of protection for patients who may not respond well to COVID vaccine –  Health News Florida – 31 January 2022

Acknowledgements

Vivian G. Cheung, MD, – for the description of Evulsheld and bringing this issue to my attention

Rob Relyea – for his amazing Evusheld tool and community participation

Editorial

While I received a lot of help, any errors are mine. – Editor

Questions, comments, suggestions?






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    5 COVID Vaccines and No Immunity

    By DNW Contributors / 2022-01-13
    Posted in

    My husband was treated with Rituximab this winter for a rare B-cell lymphoma. He has had 5 vaccines (2 before his treatment and 3 in the months following) and still has no neutralizing antibodies to the COVID virus. We have been tracking Evusheld since summer, and we were extremely excited when it was approved on Dec 8 by the FDA. Our hope has turned to despair, as we have realized that the federal government has made no effort to purchase more than their original contract of 700,000 doses – for 7 million immune-compromised people in the U.S.! Our state has done a terrific job of ordering and distributing doses, and the major medical center where my husband receives treatment has done a marvelous job of communication about their prioritization strategy. They have only received 96 doses thus far, and still don’t know when my husband will be eligible for a dose. We fear his number won’t come up before the current stock is depleted. The big story: Why isn’t the federal government buying enough Evusheld for the most vulnerable people in America?

    Martha Gershun

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    We Must Protect the Most Vulnerable from COVID

    By DNW Contributors / 2022-01-13
    Posted in

    On January 12 the U.S. government announced it was purchasing an additional 500,000 doses of AstraZeneca’s Evusheld, the only pre-exposure treatment approved by the FDA for immune-compromised people who cannot mount a response to the available COVID vaccines. This brings the total U.S. commitment to purchase this vital treatment to 1.2 million doses.

    While this is excellent news, the new agreement still falls far short of the doses needed to provide protection for the 7 million people who are immune compromised in the U.S. Furthermore, like vaccines, this treatment will likely have to be repeated (studies suggest every 6 months). An ongoing supply will be needed.
    I care about this for two highly personal reasons.

    My husband was treated for lymphoma in 2021. Unfortunately, one of the wonderful drugs (Rituximab) that helped him achieve remission also depleted his B cells. He has received four vaccines (two Pfizers before treatment and two Modernas after) and still has no discernable neutralizing antibodies to COVID. Because his underlying condition leaves him extremely vulnerable to a bad outcome from the virus, we have remained almost completely isolated for the past 22 months. We do not go to the store. We do not go inside the post office. We limit our visits to doctors and dentists. Neither of us is able to work in person. We need Evusheld in order to regain some ability to return to daily activities outside our home.

    I am also an altruistic living organ donor. I donated a kidney in 2018 at the Mayo Clinic to a woman I read about in the newspaper. Many organ transplant recipients remain vulnerable to COVID due to the immune suppressant medications they must take to “keep” their new organs. They need Evusheld, too. It is horrifying that our government would fail to purchase the needed drugs to preserve the valuable gift represented by organ donation.

    Protecting immune compromised people from COVID matters to the general population, too. Studies show the virus can remain within immune compromised patients for months, providing a ready breeding ground for variants. In fact, many scientists believe that’s how Omicron evolved. Protecting the immune compromised will help limit future variants.

    The U.S. government has made a clear and vocal commitment to purchase sufficient vaccine doses to give every American who is eligible both vaccines and boosters. And yet it has failed to make a similar commitment to protect those who are most vulnerable to the virus. Providing COVID protection to the immune compromised must be a vital component of any long-term pandemic mitigation strategy.
    The federal government must buy enough Evusheld for everyone who needs it.


    Contributed by Martha Gershun


    Ed. Note – you can help by signing this letter to Secretary Becerra of the US Department of Health and Human Services (link)

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    Better COVID protection for Immunocompromised Americans with Evusheld – a letter to HHS Secretary Xavier Becerra

    By DNW Contributors / 2022-01-12
    Posted in

    Help the 7 million immunocompromised Americans get protected from COVID by signing this Citizen’s Letter to HHS Secretary Xavier Becerra.

    Background

    There are 7 million Americans with compromised immune systems. The standard COVID vaccine doses aren’t enough to give any immunity. Fortunately, AstraZeneca has developed a medicine called Evusheld that can provide COVID protection for many immunocompromised people Unfortunately, the US Department of Health and Human Services has only ordered 700,000 doses – just 10 percent of what is needed (see There’s a new drug to prevent Covid-19, but there won’t be nearly enough for Americans who are eligible).

    … even though the company that produces it, AstraZeneca can produce more:

    The US government could purchase more doses if they wanted to,” the company spokesperson wrote in an email. “We already hold inventory of finished product that exceeds near-term forecast demand, and manufacturing capacity has been reserved with significant further quantities of product already in various stages of manufacture in the supply chain.”

    You can help by joining our campaign to get Evusheld for those who need it….

    just by signing a letter.

    The Letter

    Dear Secretary Becerra –

    There are 7 million immunocrompromised Americans who need the protection that Evusheld provides against COVID-19. Many are already vaccinated but, unfortunately, the vaccine alone (even with extra doses) doesn’t provide enough protection. Others either can’t be safely vaccinated at all or receive no effective protection from the vaccines.

    Their lives are valuable and they deserve protection.

    To date, HHS has ordered only 700,000 doses and, based up the experiences of patients around the country, there is no systematic method for allocating the available doses nor method for making our immunocompromised citizens even aware that this tool exists that could literally save their lives.

    It should be unacceptable to you that when asked about Evusheld, an HHS spokesperson responded:

    “primary protection from COVID-19 related disease including immunocompromised populations is still through vaccination.”

    The people of the United States deserve better:

    Provide a plan for how many doses of Evusheld will be available to protect the entire affected immunocompromised population of the US.

    Provide a schedule for when those Evusheld doses will be delivered to the US government.

    Provide a plan for distributing those Evusheld doses to the people who need them.

    Provide a clear process for states and organizations to quickly, effectively, and equitably deliver those Evusheld doses to those who need it.

    Publicize to the relevant communities  the availability and benefits of Evusheld, the criteria for being qualified for it, how to get it, and who to contact in case of problems.

    Sincerely,

    Concerned Citizens

    You can sign two ways

    1. Just fill out this form and we’ll add your name to our letter and follow along as we work to get Evusheld for those who need it.







      2. Feel free to cut and paste and use this letter to contact Secretary Becerra. You can also send a Tweet to him at: https://twitter.com/SecBecerra / @SecBecerra

      Secretary Xavier Becerra
      The U.S. Department of Health & Human Services
      200 Independence Avenue, S.W.
      Washington, D.C. 20201

      3. Even better, do both.

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      High-Risk Vaccine Hesitancy

      By Alice Wong / 2021-09-07
      Posted in

      High-Risk Vaccine Hesitancy  Brianne Benness

      At this time last year, I didn’t know what to do about the flu vaccine. We were already in the thick of the pandemic: grieving the disproportionate loss of disabled people in congregate care facilities, listening to friends and high-profile strangers express their relief that the only people dying from this virus were people with preexisting conditions, and watching as the devastation of long covid was met with the kind

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