
There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: I am enthusiastic about these vaccines and can’t wait to get one.
Image credit: Johns Hopkins Medicine.
Important: My opinion is not a substitute for medical advice. Some ME specialists have issued statements about whether/how to take the vaccine, and it is best to discuss the vaccines and your individual risks with your doctor. If you are interested in an overview of COVID-19 vaccines, Caroline Christian wrote a great article that explains how they work.
As of this writing, two vaccines have been approved in the United States and both work amazingly well. The New York Times reported that of the 32,000 people who received the vaccine in the Moderna and Pfizer trials, only ONE person developed severe COVID-19, and that single case did not require hospitalization. Both vaccines were about 95% effective at preventing COVID-19 disease of any severity at all.
That level of protection is the main reason I want a vaccine as soon as possible. I am terrified of COVID-19 disease. Early in the pandemic, I read this article by a deputy editor of the New York Times about caring for her husband when he had COVID-19. It took me back to the first few days after my husband had a stroke, reminding me of the fear and level of effort that came with caring for him. My husband and I both have high-risk conditions, so if we get COVID-19 there is significant potential for it to be severe disease. The COVID-19 vaccines will protect us from that.
The potential side effects of the vaccines are not a deterrent to me, despite the difficulty I have had with vaccine side effects in the past. While the flu vaccine makes me feel a little crummy, I was crashed for days after the second dose of Shingrix. On the other hand, I just received the pneumococcal vaccine and had no side effects at all. These vaccines all use different platforms or mechanisms to provoke an immune response, so a bad reaction to one vaccine doesn’t mean you’ll have the same reaction to all vaccines. I’m still mentally prepared for the COVID-19 vaccine to hit me hard, but crashing for a few days pales in comparison to the potential seriousness of COVID-19 itself. Jen Brea became bedbound for months after COVID-19, so the risk of vaccine side effects are worth it to me.
Beyond typical vaccine side effects, there is a risk of severe allergic reaction to the vaccines. This raises special concerns for people with mast cell disease, including people (like me) with mast cell activation syndrome. There is little documented evidence of whether people with mast cell disease have an increased risk of side effects or complications from the vaccine. The Mast Cell Disease Society recommends pre-medicating with an H1 blocker one hour prior to vaccination. The Center for Complex Diseases concluded “that the risk:benefit ratio of those with severe allergies still favors getting the vaccine vs. taking one’s chances with getting Covid19.” I will definitely do what I can to mitigate any allergic reaction or symptom exacerbation.
Here’s how I balance my risks and benefits: I am at high-risk for severe COVID-19 due to underlying conditions (in addition to ME). The Moderna and Pfizer-BioNTech vaccines provide 95% protection from COVID-19, and nearly complete protection against severe disease. Neither my risk of side effects nor my mast cell activation syndrome are so significant that they outweigh the benefit of being protected from COVID-19 disease.
I know many people with ME who are taking a wait-and-see approach to the vaccine, and they all have good reasons for doing so. I do not intend to criticize anyone for their choices. For me, though, the wait is not worth the risk.
First, we don’t know if a vaccinated person could still become infected and possibly transmit the virus to others, including unvaccinated members of their households. There hasn’t been much reporting on what happens when only some people in a household have been vaccinated, and I don’t know if the vaccine clinical trials collected data on household contacts to see if there was any difference in the rate of infection.
Second, we might not be able to rely on herd immunity for protection. Herd immunity is the indirect protection from an infectious disease that comes when a sufficient percentage of a population is immune. At the right level of group immunity, the pathogen can’t circulate well enough in the population to spread to the people without individual immunity.
How many people need to be immune in order to reach herd immunity? It’s different for every virus. Measles requires 95% population immunity, while polio requires about 80%. Early in the COVID-19 pandemic, it was estimated that herd immunity could be reached when 70% of the population was immune. However, no one knows for certain, according to both WHO and CDC. NIH Director Dr. Francis Collins recently estimated that 80-85% immunization will be needed.
This is a problem. The agonizingly slow rollout of the vaccines in the United States means that even under the best projection, we won’t be able to immunize 85% of our population until the fall at least. And not everyone is eager to take the vaccine. Vaccine resistance has also become a political position, such as with the small group of anti-vaccine and far right protesters who temporarily shut down a community vaccination site in Los Angeles. Finally, we don’t know how emerging variants of SARS-CoV-2 will complicate vaccine-induced immunity. The Washington Post quoted Dr. Christopher Murray of the Institute for Health Metrics and Evaluation as saying that “the prospect of herd immunity, at least before next winter, [is] much less likely.”
If my choice is to stay in lock down for at least another year or to get the vaccine, I am getting that vaccine. I need to hug my Dad. I need to visit with friends indoors. I need to get back the small amount of normalcy that I had in my housebound/disabled life. I will gladly continue to adhere to all prevention measures like masking, etc, of course. I just want to be able to interact with the people I love.
The bad news is that while I am currently eligible for the vaccine in my state, there is no vaccine to be had. My husband and I are on at least five waiting lists. I signed up for our county’s waiting list on the second day it was open, and there are tens of thousands of people ahead of us in line. I have twenty websites bookmarked and I check them at least once a day to see if other providers have opened waiting lists. Our county has a population of 850,000, a quarter of which is currently eligible, but the county has been getting less than 5,000 doses per week. The federal government has promised to increase supply soon, and the potential approval of additional vaccines would help tremendously. Nevertheless, I have a feeling we are going to be waiting a long, long time.
I understand that not everyone is or can be as anxious to get vaccinated as I am. Yet for most people, the vaccines are safe and highly effective. I am READY. Please, somebody vax me!
Vaccine Melee
The COVID-19 vaccine rollout has been uneven, to put it kindly. In my home state of Pennsylvania, it’s been a mess (that’s also putting it kindly). The actual situation has a lot more in common with a Black Friday scramble for a PlayStation 5. Or the Battle of Pelennor Fields.
Here’s how I thought the process would work: The federal government would send a supply of vaccine to the state based on population demographics, and the state would send it out to the counties. The counties would control distribution to providers (like pharmacies and hospitals) and also offer vaccinations direct to the community. People would sign up on one list with the county (or state), and then wait their turn as the vaccine supply increased from a trickle to a torrent. I thought we had learned from past mass vaccination campaigns.
I was naive, to put it kindly.
Here’s how it’s actually playing out here: The federal government sends a small fraction of what Pennsylvania requests, less than a quarter of the request in one recent week. No one seems to know how the feds decide how much to send. Pennsylvania then distributes that reduced supply to the counties and to providers who are willing to vaccinate, but the Department of Health has not explained how they decide how much each entity gets. The providers and counties then offer the vaccine to eligible people.
That sounds straightforward enough, although the low supply is an obvious problem. My county estimates that more than 200,000 people are currently eligible for vaccination, including both my husband and me. Last week, the county received only 3,900 first doses for the entire week. There is no public reporting on how many first doses were sent directly to other providers in the county. Two months into the vaccination campaign, less than 10% of those eligible have been fully vaccinated.
Yet the barriers to vaccination here extend far beyond the low supply. Pennsylvania decided not to create a central registry of people who want to be vaccinated, and no one has offered a plausible explanation for why. Instead, Pennsylvania left it up to the providers to figure out. Note that I said providers, not counties. Every single vaccine provider in the state has to figure this out, and there are about 1,700 participating providers.
If you want to get a vaccine from an independent pharmacy, you need to get on their list. If you want to get the vaccine from a primary care practice, you need to get on their list. Large health systems like Jefferson Health and Penn Medicine have their own obscure method and have told patients, Don’t call us, we’ll call you. The counties have lists too. Putting your name on the county list only gets you in line for a county-provided vaccine. The county list does not interface with the other providers. So everyone has to sign up with each provider as well as the county. While our county is encouraging people to get the vaccine anywhere they can and to sign up for lots of lists, the state is actually discouraging people from doing that (although no one has explained why).
Larger chain pharmacies are running a completely different process. Rite Aid and Walgreens and other chains don’t have waiting lists. They offer appointments through their websites, except it’s not clear when they post the new openings. You have to be lucky and looking at the website at exactly the right moment because the appointment slots disappear within seconds.
Then there is the problem of line jumpers. My county is using a state-provided program called PrepMod to manage vaccine sign ups and appointments. When it’s your turn to be vaccinated, the county send you an email with a link to make your appointment. But PrepMod doesn’t create unique single-use links. The links can be used by more than one person. So people are forwarding the links to family and friends and they can make appointments, too. Even if they are all eligible under the current vaccine phase, it still means they are jumping the line.
The end result is an absolute melee. Last weekend, an independent pharmacy announced it was opening 400 slots, and 15,000 people tried to get one. The appointments were gone in less than one minute. I managed to get my husband an appointment by some miracle, but not one for myself.
Individuals in Pennsylvania have to surmount multiple barriers to get vaccinated. First, you have to know what distribution phase you qualify for. Then, you have to decipher the decentralized process to even know where to start. You need access to the internet, and it really helps if you read and speak English. You have to sign up at as many places as you can find. If you can spend hours refreshing screens on your computer, you have an advantage. If someone sends you a sign up link, you have an advantage. If you know someone who knows a pharmacist, you might be able to skip the line altogether. People with access and means can get vaccinated, and they get other eligible people vaccinated. If you don’t have access to the internet or don’t understand the labyrinth, then you are not getting vaccinated right now.
This is due to a failure of leadership at the federal and state level, and is replicated to one degree another in most states. At some point I hope there is accountability for that. The current problems in Pennsylvania are well recognized and acknowledged by the county and the state. The county is trying to come up with a workaround to prevent line jumpers. The state now requires providers to offer some appointments by phone, and is concentrating the new supply among a smaller number of providers. Everyone keeps asking us to be patient.
Oh, I’m being patient alright. I check a long list of provider websites at least twice a day. I fill out the sign up forms at retail pharmacies every time, and then try to find a pharmacy within a 50 mile radius with open appointments. I check the county numbers to see if they have started scheduling people who signed up the day I did. I watch the weekly briefings from my county and the state, and I’m reading as much as I can in the news.
And I’m trying really hard to not let the search for a vaccine take over my life. It’s not healthy for me to refresh web pages for hours a day. I only leave the house about once a month, and I double-mask when I do go out. I know the vaccine supply will increase and eventually my turn will come. I’ll stay as safe as I can until it does.
But I can’t help thinking that there must be a better way.