This past Saturday I got the call saying I could come off a COVID-19 vaccine wait list if I hustled down to a local vaccine clinic. I had nothing else going on (read: I have had anything else going on since last March) so I hopped in the car to get my vaccine. It was a whirlwind hour or so of my life that I probably will not soon forget. At about 3:00pm I received the first of my two vaccine doses. That shot I was given was made by Moderna, and will get my second one near the end of March.
The following day I hosted an AMA over on my Instagram page to talk through how I was able to put myself on a vaccine waiting list, how I felt after getting the shot and what we are still doing to make sure people with CF can get their vaccines as soon as possible.
The most common question I have gotten so far has been about my general health after the shot. Did I have side effects and how have I felt since?
Honestly, I have felt totally fine. The most noticeable side effect was some injection site soreness, which set on a few hours after I got my shot and lasted for about 36 hours. For those who don’t love getting shots, the shot itself did not hurt (information I would have loved to have as a 16 year old). I was somewhat fatigued for about half the day on Sunday (the day after dosing). It went away as quickly as it set in. Overall, my experience with side effects wasn’t bad at all. Everything has already cleared up. I have taken quite a few medications – including the early days of Trikafta – that have made me feel significantly worse.
Were you nervous or “hesitant”?
No… not at all. I made the joke to Darcy that this is the fourth “unapproved” (EUA does not equal approval) drug I have taken. Hesitancy was not part of my vocabulary. Moderna was incredibly transparent with the data they submitted to the FDA ahead of the agency granting an Emergency Use Authorization and even disclosed that cystic fibrosis was among the high-risk conditions evaluated during their clinical trial program. Hell, Trikafta was approved with far fewer human test subjects and I willingly take that drug every day. mRNA technology does not scare me. While the vaccine is novel, the technology behind mRNA drugs is not new. It’s even in the CF clinical pipeline for a handful of potential therapeutic options. It is quite possible that a lot of us with CF will soon be using mRNA-based drugs as part of our standard of care!
Why did you need to get onto a waitlist?
The way New Hampshire opened the registration to people with underlying conditions forced a competitive imbalance for scheduling on people living with conditions like CF. Phase 1B includes people 65 and older, people who have two high risk medical conditions, a handful of essential professions and then a referral process for people with high-risk conditions like CF that are multisystem disorders (and/or rare diseases). The referral process has been nothing short of a disaster in the state.
For people with CF who have been put into phase 1B, we were forced to wait behind the age-based allocation via the way sign ups were conducted. People 65+ were able to register via New Hampshire’s vaccine screening website to get a VAMS (the CDC’s service for vaccine administration) login and thus vaccine appointment. People who qualified via a high risk medical condition needed to document their condition up front via a form faxed from their provider to the State. Only once the fax was received and then processed did patients get a VAMS login sent to them. The problem was that because patients were required to contact a provider and because the faxes were processed by hand, patients were forced to wait behind a long lead time to schedule appointments. So a weird situation developed in the state where people with high risk medical conditions have had to wait for a scheduling email and are thus losing out on earlier appointment times. By the time a VAMS login arrives in an email inbox, people are forced to schedule as far out as April – which is precisely what happened to me. There was about a 10-day lag between when I was referred to when I received the email inviting me to schedule an appointment. My initial appointment was scheduled for April 21st. As a result, I started searching for waitlists.
How did you find waitlists?
This was the most difficult and frustrating part for sure because it required a lot of patience, quite a few phone calls and more denials than I care to count. The first thing I did was show up to one of the state-run vaccine clinics. In New Hampshire, the National Guard is handling the rollout in a bunch of locations, so I drove down to the local one and was immediately turned away. The Guardsman who turned me away, though, did offer some advice and said to call the State vaccine hotline and ask about “waiting lists.” That’s precisely what I did when I got home. By that point it was probably the 6th time I had called the hotline after the dreadful wait I experienced when I was referred, so I was well accustomed to the long hold times (another helpful hint, if your state has a 24-hour hot line, wake up early and call then). When I finally got through, I was able to choose two locations for a “last minute call” if either vaccine clinic had no-shows pile up throughout the day. Because thawed out doses can’t go to waste, I declared that I could make myself available if needed. One site was 5 minutes away and the other about 40 minutes. It wasn’t exactly a traditional waiting list under the commonly used definition for the term, but it was a list based on when people were scheduled – the State has been trying to award these “last minute calls” to people who have had a hard time scheduling their first appointment, which is the category I fell into since I was scheduled out into April. I am calling it a waiting list because that’s what I had to do… wait.
Not long after that, I made frantic evening drive to a local VA hospital after it came to light they had extra vaccine doses that needed to go out before a certain time that evening. A friend of mine who served in the Air Force and his wife got in touch with me and Darcy, and said that I should drive down to give it a shot (no pun intended). We agreed there was a low likelihood I would get a shot because I was not part of the VA system and was most certainly not a veteran. I am also a New Hampshire resident and the VA that had these shots was in Vermont, so I was also crossing a state line. That all said, there was no harm in trying. Controlled chaos is how I like to describe that night. Shots were being given out like candy, but I wasn’t (and probably rightfully) able to talk myself into the clinic. Another denial.
A few days later, and still without a wait list call back, New Hampshire opened up Walgreens locations to give shots and said that people who were scheduled to receive first doses as far out as April would get a call from the State for a chance to reschedule sooner at a local pharmacy. After impatiently waiting for a phone call from the state for another couple days, I called the state hotline again and was told there was nothing I could do to advance myself into the Walgreens list except say that I was willing to be moved. I agreed to be put on that list as well (who knows if that actually did anything or if I was just given the opportunity to feel like I was doing something productive).
I felt like Walgreens was my best bet because I have several friends (with CF and without) who have been able to get what we’re calling “sloppy seconds shots” – that is the shots left at the end of the day after the no-shows pile up — at various Walgreens locations around the country. So even though I was on the waiting list to get moved to a Walgreens, I drove on down to the pharmacy, was turned away (but bought a bag of Swedish Fish to drown out my sorrows), and again left without a plan other than to wait.
Oddly enough, the day I was able to get a shot two unrelated wait lists came through for me. I was able to get my shot because Dartmouth Health Services (the infirmary affiliated with the College, not the local medical center) has me on a high-risk student list and if they catch wind of extra shots in our area, they call us, and that is what happened last Saturday. I went down to the medical center on a moment’s notice and was put into a waiting area where the manager literally came in and counted us off one at a time. After a brief wait, I was accepted into the vaccine clinic for a shot. My dose was the 11th dose – the extra one – in the 10-dose vial that you might hear about on the news. On the way home, the State finally called me to tell me I had an opportunity to get a vaccine at a local clinic if I was available, but after a quick laugh I told the woman on the other end of the phone that I was already taken care of!
What is your advice for people still waiting?
Call call call. I called the state vaccine hotline no fewer than a dozen times. It was a pain in the ass, but it was worth it. I knew I was often in for long wait times, so I called when I was doing treatments, early in the morning, or driving somewhere. When I couldn’t call, Darcy did. 95% of the time I spoke with someone on the hotline, the conversation was super quick, “sorry we can’t help you” or “just keep waiting.” But every once in a while I would get through to someone who was helpful, and I would wait while they would try to dig up more information (that’s how I figured out the faxed referrals were processed by hand).
Don’t take rejection personally. I was denied a shot more times than I can count, but that didn’t deter me from just going back the next day after class. Sure, it was awkward when I announced I wasn’t a Vet at the VA the night they had extra shots, but at least I tried. I also felt like I was building some power with each rejection as far as our advocacy was concerned. I have felt – since the very beginning – that people with CF and others for high outcome risk should have vaccine priority. Each rejection I got made my advocacy stronger and stronger (both personally and on behalf of the community). I want YOU to feel the same way. Take each rejection as chance to go back the next day to demonstrate that you are determined to get a vaccine, or as a way to share with the world why its been so hard for you.
Finally, craft your “pitch.” If you’re trying to get on a waiting list, you’ll have a brief chance to explain why you’re there. With all of these states bowing down to “simplicity” for vaccine allocations (cough cough Connecticut, North Carolina, Michigan and others), it’s okay to let your emotion drive you to a chance to get a shot when someone else doesn’t show up.
Don’t give up, because I promise you we won’t give up on the advocacy front either.