‘IT WAS SUCH A BLOW’
For 33-year-old with lupus, COVID vaccine rollout has been weeks of frustration
“I was fine with waiting as long as possible — as long as we were prioritizing those most at risk.” Alyssa MacKenzie
NEW CANAAN — Alyssa MacKenzie said she was devastated three weeks ago when the governor announced a new plan for rolling out the COVID-19 vaccine.
MacKenzie has lupus, an autoimmune disease, and under the state’s old plan, people with certain underlying health conditions were poised to become eligible in March, though the state hadn’t yet specified which conditions would be included. Then, in late February, Gov. Ned Lamont said eligibility would almost exclusively be based on age going forward.
“Even though we are used to sort of being erased, and even though we know that promises have been broken to us before, we clearly all still held on to a little bit of hope that our governments, our leaders would do the right thing once it came to rolling out the vaccine,” said MacKenzie, a 33-year-old New Canaan resident.
MacKenzie also wishes the state did more to acknowledge how the change in plans would impact people with chronic conditions.
“With all the empathy in the world for the people who have to make these decisions, because I do not envy them, on Feb. 22, it was such a blow to hear that we were being removed from the rollout plan altogether with really not even an apology or any kind of … There was nothing really said about the fact
that it was happening,” MacKenzie said.
Feb. 22 was also MacKenzie’s birthday.
When state officials revealed the new plan, they noted that vaccine supply is limited and argued that expanding eligibility by age groups would be simpler, faster and equitable.
“I understood the desire for efficiency,” MacKenzie said. “And I understand the implications — like the more efficient you are, the more vaccines you get and you get closer to herd immunity and everything else. But I almost just wanted to hear Lamont say, ‘We’re prioritizing efficiency over all else.’ I just kind of needed that confirmation that, ‘Yes, we have chosen that being efficient is more important than protecting you.’ ”
The state also announced that teachers and childcare providers would be able to get the vaccine at special clinics — something MacKenzie said she supports. However, she questioned why there couldn’t also have been clinics for high-risk essential workers, even though she wouldn’t have fallen under that category.
“I was fine with waiting as long as possible — as long as we were prioritizing those most at risk,” MacKenzie said.
She also pointed to a New York Times story about the coronavirus variant that recently emerged in Great Britain. Experts suspect that the virus evolved after it infected a person with a weak immune system — providing another argument for why such people should receive the vaccine before others.
This week, Lamont announced that with vaccine supply expected to increase, younger people would become eligible sooner than initially planned. Lamont’s office also said that the state would work with providers to “accelerate access for the most medically highrisk individuals” under age 45.
Registration for people between 16 and 44 years old is slated to open April 5. But questions remain about the prioritization of people with high-risk medical conditions, including which conditions will qualify someone for quicker access.
The Centers for Disease Control and Prevention website outlines a number of conditions that put people at a higher risk of becoming seriously ill from the coronavirus — though the agency notes that its list isn’t exhaustive. The website also lists conditions that might increase a person’s risk, but more data is needed.
On the second list is having a weakened immune system. People who have lupus may be using medications that suppress their immune systems.
MacKenzie said she was encouraged by the news that Connecticut’s vaccine supply was set to increase, but she wants to know more about the state’s strategy for ensuring that anyone who wants to schedule an appointment is able to do so.
She said that even though she is “pretty technologically savvy,” she struggled to help her father get the vaccine when he became eligible because of his age.
She noted that people with conditions like hers have other concerns as well, including being exposed when they go to get the vaccine. In addition, her doctors have recommended that she get the Pfizer or Moderna vaccine, while some of her friends with different autoimmune issues have been advised to get Johnson & Johnson.
“People like me have been told by our medical professionals which vaccine we’ll have the most luck with and will be least reactive to our bodies, which is kind of different from person to person,” MacKenzie said.
MacKenzie was formally diagnosed with systemic lupus when she was about 25 years old, and her siblings have autoimmune diseases as well.
She said that “in some ways, it’s been a blessing to have a family that gets it.”
“Obviously, it’s difficult to deal with being sick. But it’s, in many ways, the socio-emotional aspect that can be most devastating,” she said. “The disability community is very good at finding silver linings.”
MacKenzie said that over the last year, she has spent much of her time advocating for disability justice. She is also a freelance writer and a tutor for middle and high school students.
She recently helped establish the Vulnerable Advocates Collective, a group that is urging states to prioritize people with disabilities and underlying conditions in their vaccine rollouts.