The morning the New York Times ran this article, my dad called me and asked -- only half-jokingly -- whether I had written an article for the NYT. Confused, I listened to him summarize the article, which spoke about the chaos of Maryland’s vaccine distribution. This was not a surprise to me.
I have had a difficult time finding vaccine appointments. I qualified on January 25th and immediately put myself on a list. Weeks went by, and after about six more I realized I was going to have to be more proactive. So, I put myself on three more lists, and I continued to check three or four pharmacy sites every day. All around me I heard about people getting vaccinated – at mass vaccination sites, at pharmacies, at Department of Health offices, at hospitals, all the places I was checking but never saw availability. These people were getting links for appointments sent to them a week or so after signing up.
Why hadn’t that happened for me?
I can’t be sure, but I suspect that it was a combination of the dysfunctional distribution infrastructure in my state, and the realities of prioritization. People with high-risk conditions just didn’t rate in the vaccine rollout. Everyone else in a prioritized group did, but not us.
Well, because older folks are getting hit very hard – of course we should prioritize them. The teachers should be prioritized because we need to look out for our kids, our future, and get people with kids back to work. Frontline workers need to be prioritized because they are saving our lives by putting theirs on the line. Same with grocery store workers, public transportation workers, and all of the folks who have made it so we can survive. People who work for the government were prioritized as part of a continuation of government plan.
But what about the disabled? My five COVID co-morbidities – all of which were commonly mentioned by public health officials and doctors who talked about high-risk patients – surely made me and others like me just as much of a priority as the other groups. Didn’t they?
No, no they did not.
The reality was that, as time ticked by, I started asking questions. I reached out to people at the Maryland Department of Health. No answer. I reached out to reporters who worked the local politics beat. No answer. When I finally did get answers from some providers and those associated with distribution, the answer I got over and over again was that “they are really only focusing on the older people”. I knew no person under 65 with “only” qualifying conditions (and not a qualified job) who had gotten vaccinated. Even a friend who is a caretaker for a person with developmental disabilities struggled to find appointments for themselves or their charge. Because what are we? We are every age, race, ethnicity, religion, socio-economic bracket. Disease doesn’t discriminate. We are everyone and no one. There is no specific reason to see us as a priority among all the other at-risk groups, so they didn’t.
Finally, after ten weeks, I got an appointment. My stupid insulin pump woke me up in the middle of the night for no particular reason – it thought my blood sugar was low when it wasn’t. I couldn’t go back to sleep so I thought why not check now? I had done so under similar circumstances before and come up goose eggs, but maybe I would be lucky this time. And I was – thank you CVS for listing every location in the state and not restricting search parameters.
I confess I teared up when I got the immediate automated confirmation email. It could have been the fact that I was about four hours short of sleep at that time, but it was more that maybe I won’t die of this disease now, and maybe I can see a time when I can start living a life outside of my 981 sq ft apartment.
Just to be clear, I am not angry that so many in the other groups got vaccinated before I did. I am angry that we were told what to expect, and then the state failed miserably to fulfill the expectation. This was an emotional roller coaster that we didn’t need to ride in the midst of the most globally stressful period in at least a generation. If that’s how they were going to handle it, they never should have told us to sign up. We are a population that struggles to be seen under the best of circumstances. The vaccine rollout felt like one more opportunity to treat us like we don’t matter. We were one of the most imperiled populations, and we couldn’t get vaccinated to save our lives. Literally. I’m not prone to meltdowns. The last one was five years ago on a vacation overseas where my pump broke and I couldn’t get a replacement (thank you for your patience and support, Moose and Squirrel), but even I had one a couple of weeks ago from the frustration of the situation
And now, in a matter of days, everyone will be eligible. Which is good. But it was only as the appointments began to open to all that I was able to get one. Well, the message has been received – no matter how much certain healthcare stakeholders spout about patient engagement and prioritizing patient needs, it is all lip service.
So, my challenge for those in charge, who say they see us, who say they want to hear what we have to say and make healthcare better for us: prove it. Hopefully before the next pandemic.