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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


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)


Build Back Better, Better Jobs Act

By Nicole LeBlanc / 2021-09-01
Posted in

As America moves towards pandemic recovery it is essential now more than ever that we make massive investments in expanding access to Home-Community Based Services (HCBS) for kids and adults with autism and other developmental disabilities regardless of IQ, or at risk of institutionalization. Our service system must be reformed into a pro-active system that enables people with disabilities and their families to get access to HCBS without being put on wait lists for decades or needing to be in crisis to get services. Community Living has been shown to be safer than segregated settings like day programs, group homes, institutions, and so forth. In addition when people like me live in the community we often live longer and have better health, life outcomes. The COVID19 pandemic proves this when we look at COVID19 risk in segregated settings compared to those who self direct their services who may have lower risk of the virus.
As we reform our system it is essential that we move from a system centered model to a truly person centered system that supports self determination, self direction, individualized support in the community.

In order to make this happen we must invest in affordable accessible housing, public transit, and a highly trained Direct Support Workforce that is paid livable wages , decent benefits like paid sick days, leave, vacation days, tuition reimbursement, and so forth. Along with access to paid training on a variety of topics like autism, effective job coaching, self determination, self advocacy, health disparities, health promotion and much more. Being paid a livable wage is a human right. A nation is judged by how a society treats its most vulnerable. A long term care expansion is essential given that COVID19 is going to lead to more people becoming disabled due to Long COVID. Disability is a natural part of the human experience and we must plan for a society that can accommodate the challenges that come with being disabled.

On a personal level expanding access to HCBS and allowing us to buy into it and get access to HCBS via Medicaid state plan would make my life easier. As a person with autism, anxiety, ADHD, insomnia having access to HCBS would make my life easier in that it would allow me to get support with things like cleaning, budgeting, organizing, technology support, dealing with life transitions, stress management, medical management, managing public benefits, resolving tax issues and other complex problem that come up on a day to to day basis. Along with transportation to places not easily accessible via public transit. In the area of employment support expanding HCBS for all adults with autism would allow people like me to get job coaching that is critical to my success as a professional Disability Rights Advocate when it comes to various work tasks like drafting meeting agendas, dealing with computer malfunctions, editing written briefs on challenging topics like doctor house call interviews and so forth. In addition to things like facilitating meetings, organizing files, preparing and creating presentations, editing,writing things in plain English, managing deadlines to name a few.

When I lived in Vermont and got HCBS services I self directed my waiver and found self direction to be very empowering. It is vital that we expand self direction and resources available to support people who self direct their services in hiring, and retaining high quality job coaches and support staff that are critical in keeping my anxiety and stress to a minimum. Self Direction is one of the safest models in the era of COVID19.


Nicole LeBlanc