Hello. My name is Susan and I am immunodeficient. I have to go to in person appointments for lifesaving treatments. I am the sole caregiver for my aging mom who is a disabled veteran that just learned she needs two surgeries.

But I am also a person who has been bumped down a priority list for vaccines to end the pandemic.

When this pandemic started, we had shutdowns to protect us. Then it was mask mandates. And now it is supposed to be vaccines.

But here is what has happened.

My hopes have been dashed.

ACIP decided my life is not worth getting a vaccine.

The CDC decided my life is not worth getting a vaccine.

My state decided my life is not worth getting a vaccine.

And politicians are skipping the lines.

How?

I was a member of phase 1b. We would have been moving to getting vaccinated at the end of January or beginning of February.

But as of December 20, ACIP and the CDC prioritized healthy workers over people like me who could die from this.

And as of December 21, Alabama adopting the ACIP guidance means vulnerable patients like me are now AFTER phases 2-4. Yep. That’s right. Vulnerable patients who have the highest risk of dying are now basically going to die waiting to get vaccinated.

In my state, chemo patients cannot even get chest ports for their continuity of treatment. In my state, people like me are dying in exponentially higher rates than those who are working in stores and schools and banks.

Yet my state just bumped people like me way way down the priority list for the vaccine.

And they don’t seem to care.

No one is advocating for us. No one is listening to us. And no one seems to care about protecting us anymore.

They call it COVID fatigue.

But here’s the worst part for me.

I am the sole caregiver for a veteran who cannot have surgery until I am vaccinated. And I am going to be lucky if I live long to be vaccinated.

I have a bucket list to fill before I die to make memories with my aging mom. And everything is indefinite.

Night to Shine postponed in person. Indefinitely.

That return trip to D.C. postponed. Indefinitely.

That second trip to Disney World. Postponed. Indefinitely.

That first trip to St. Louis, to Nashville, to Mall of Americans. Postponed. Indefinitely.

The only special needs group in my area that I can afford to go to? Postponed. Indefinitely.

For the want of a vaccine that now I may never be able to get because I was bumped down the priority list.

Last week? I was feeling lighter with hopes of a vaccine around the corner feeling secure about my position in phase 1b.

This week I cannot stop crying and being angry that my government has decided that my life is not worth getting a vaccine to keep me from needing the hospital care that will not be available to me anyway.

#MedicallyFragile #COVID #covidvaccines #immunodeficiency