Two years. That’s how long I have served in solitary confinement. My crime? Being immune suppressed during a pandemic.

I didn’t choose this. I didn’t actually commit any crime. Dear God, I know of actual criminals who have received lighter sentences. But, because I need a very strong B cell suppressing drug to treat my MS, it left me extremely vulnerable at the worst possible time. And because the immune suppressed population is apparently not at the forefront of the minds of the medical community, we were forgotten. Left to wait, hope, wait, hope, wait and finally realize we would be the last to be addressed.

I still harbor many feelings about how the medical community have handled the immune suppressed patients during this pandemic and continue to do so. None of them very positive. We are NOT disposable. We should NOT be forgotten. And we certainly shouldn’t be last on the list of patients to address.

WHY are resources being spent (wasted) on those who refuse to vaccinate, mitigate and participate in public health policy? When in fact, those very resources (financial) could be funneled into finding and producing treatment for the immune suppressed patients? Patients who HAVE been vaccinated but, due to immune suppressant medications, the vaccine fails to work. WHY?!

Instead, immune suppressed patients are forced to continue to isolate. To remain “forgotten.” After TWO YEARS!

Approximately 6 weeks ago, a drug called Evusheld was finally released in Massachusetts. It’s a monoclonal antibody treatment that’s used to treat immune suppressed patients. It provides six months (maybe more) of protection against the virus for those that haven’t responded to the vaccine. Two injections, administered on the same day and by the next day, you’re good to go. The problem was, it was extremely limited.

I reached out to my doctor the day it was released in Massachusetts. Her response? The physicians had been directed to submit the names of their patients who were over 60, on B cell suppressing treatment and they would be notified as to who could receive the treatment. It was basically a lottery system. A lottery system for a medication that could finally free us from two years of isolation. Are you fucking kidding me?! How could this possibly be true?!

My anger seething, I began writing. I wrote to the Governor. He of course, never responded. I wrote to Astra Zeneca, the manufacturer of Evusheld, they never responded. I even tried to contact a couple of the researchers of the drug. I wanted answers. WHY were we an afterthought? WHY was this so difficult to manufacture? WHY was this NOT available for every patient that needed it?!

To this day, I have no answers. After all, I too, am one of the forgotten. And it’s reflected in their lack of so much as a reply. Or perhaps, it’s because they have no answers. Perhaps, they actually don’t know why they took so long or why they can’t make it more available. Perhaps, they’re just ashamed of themselves and they should be.

The good news is that yesterday I actually won the Evusheld lottery. I received my injections. It’s still difficult to articulate my feelings. I awoke to this weird sense of relief yet, I still have some trepidation. And I’m still filled with rage. Two years of rage.

When I was receiving my injections I was speaking to the PA who was injecting me. We were discussing the supply issue. I actually said “Well, now I can park my ass in person on the Governor’s desk until I get an answer.” He laughed. He doesn’t know me. Because I just may do that.

Yes, I finally got my “freedom” but, there’s still so many “forgotten” patients who we need to continue to fight for. We can’t allow them to be left in isolation when their only “crime” has been to be on an immune suppressant. To have a disease that required treatment.

If you or someone you know is immune suppressed and hasn’t responded to the vaccine, please ask your doctor about Evusheld. And don’t stop asking. This treatment needs to be available for every single patient that needs it. Change only occurs when you make it happen. Let’s make it happen.

#TheForgotten

#Evusheld

#Covid

#Vaccinate