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Even knowing the seriousness of COVID-19 and working as a hospital nurse, Stephanie Poché in Louisiana had concerns about getting the COVID-19 vaccine because of her type 1 diabetes (T1D). She was worried about whether it would be safe for her.

But given her work and the potential of being an asymptomatic carrier who could possibly transmit the virus to her patients or loved ones, she did some research and read about how the COVID-19 vaccines are proving safe and effective for people with diabetes (PWDs).

That sealed the deal, and Poché made the choice to get vaccinated.

“Truth is, we still don’t know enough about the virus well enough not to try to protect a life… The risk versus reward for me was clear when I had some ‘proof’ that I’d be OK taking the vaccine,” she told DiabetesMine.

Like Poché, many PWDs will likely be grappling with this decision as COVID-19 vaccine doses become more widely available in the first weeks and months of 2021.

These vaccine doses can’t come soon enough, as CNN reports that early data from the Centers for Disease Control and Prevention (CDC) indicates COVID-19 was likely the third-leading cause of death in the United States in 2020.

Couple that with research suggesting that PWDs are three times more likely to develop severe symptoms and complications if hospitalized for COVID-19, and getting vaccinated as soon as possible becomes critical.

Here is what our Diabetes Community should know about COVID-19 vaccines at this time, based on information from health authorities including the CDC, Food and Drug Administration (FDA), World Health Organization (WHO), and credentialed medical professionals within and beyond the diabetes space.

As of early 2021, three COVID-19 vaccines are available in the United States:

  • U.S. pharma giant Pfizer and its German partner, BioNTech, released the first vaccine, initially available in mid-December 2020 for those 16 and older. After the first shot, a second “booster” shot is required 21 days later. This vaccine was OK’d for children 12 and older starting in May 2021.
  • Biotech company Moderna in Massachusetts released its vaccine in late December 2020 for adults 18 and older. This also requires two shots, with a 28-day break before the second dose.
  • Pharma giant Johnson & Johnson released the third vaccine after getting FDA approval in late February 2021. Notably, this vaccine is different in that it only requires one shot (versus two separate doses) and it also doesn’t require storage at very cold temperatures, as the others need. See more details from Healthline on the J&J vaccine.

Both the Pfizer and Moderna vaccines are mRNA vaccines, a new type of vaccine that essentially “teaches” human cells how to make a protein — or a piece of a protein — that triggers an immune response inside our bodies. In turn, this produces antibodies that protect us from contracting an infection if the real virus enters our bodies.

The CDC explains that mRNA vaccines “are new, but not unknown,” and have been extensively studied before for the flu, Zika virus, rabies, and cytomegalovirus (CMV).

In fact, one of the scientists behind the key technology driving mRNA vaccines actually lives with T1D himself.

Dozens more new COVID-19 vaccines are being tested around the world, and research is ongoing for the Moderna and Pfizer-BioNTech vaccines for optimal dosing in children as well as those with autoimmune conditions.

The CDC asserts that both of the initial FDA-approved vaccines are safe and effective for most people (barring certain allergic conditions).

Clinical trials have included tens of thousands of people. Those results are available to the public on the agencies’ respective websites.

While the CDC includes PWDs in the group that can be safely vaccinated, it has issued a disclaimer for those with autoimmune conditions like T1D:

“People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them. Individuals from this group were eligible for enrollment in clinical trials.”

In the initial weeks of vaccine distribution to millions of people, the CDC reported minimal side effects. Those that did occur were minor, such as sore arms or swelling, and fever.

There are some reported allergic reactions as well, but the severe allergic reactions (anaphylaxis) requiring treatment with an EpiPen were extremely rare.

See this CDC page for more information about COVID-19 vaccines and allergies.

This is a moving target with regularly-shifting timelines.

In late 2020, the CDC established national guidelines for states to follow, with its Advisory Committee on Immunization Practices (ACIP) recommending a staged approach for rolling out vaccine doses:

  • First stage (phase 1A). Healthcare workers and long-term care facility residents and staff receive their first vaccine dose. This phase began in December 2020, with second doses beginning in early January.
  • Second stage (phase 1B). Adults 75 years and older and frontline essential workers can get vaccinated.
  • Third stage (phase 1C). Adults between 65 and 74, and those 16 to 64 who have underlying health conditions that increase the risk of serious, life threatening complications from COVID-19, can get vaccinated.

On Jan. 13, 2021, the federal government announced new recommendations that anyone 65 years or older should be offered a vaccine.

States are responsible for the rollout of these COVID-19 vaccines. Although states are not obligated to follow the new recommendation regarding age 65 and older, the change will still affect how many vaccine doses each state receives, and that will likely impact distribution.

Keep in mind that each state’s rollout plan may vary, and most are relying on local hospitals, healthcare centers, and pharmacies, like Walgreens and CVS.

Click here for a state-by-state report from the Kaiser Family Foundation, where you can look up your state’s vaccination plan.

Generally, PWDs who aren’t in healthcare or on the front lines, or aren’t 65 and older, are most often included in the third Phase 1C group, which has the lowest priority before the general public.

At first, the CDC prioritized type 2 diabetes (T2D) differently than T1D as far as prioritizing COVID-19 vaccine access.

But on March 29, 2021, the CDC revised its guidelines that prioritized both T1D and T2D at the same level. Per the CDC, they both “can make you more likely” to get severely ill from COVID-19.

That change in prioritization supports the latest research data, including several studies that show both T1D and T2D both raise the risk for more severe illness for those hit by COVID-19. One of those cited studies shows specifically that T1D presents a potential three times higher risk for more severe illness,

The CDC’s change in view on prioritizing different types follows months of advocacy, especially the 19 diabetes organizations that signed a letter in early 2021 urging the CDC to immediately prioritize T1D alongside T2D.

“The impact on the diabetes community of COVID-19 cannot be understated, with about 40 percent of U.S. COVID deaths occurring among people with diabetes thus far,” said Dr. Robert Gabbay, chief scientific and medical officer for the American Diabetes Association (ADA). “As the data makes clear, differentiating between T1D and T2D for purposes of assessing COVID risk is an error that could cost even more lives, and we urge CDC to correct this immediately.”

While experiences may vary when it comes to vaccine effects, the Diabetes Online Community is crowd-sourcing to better track what PWDS are experiencing post-vaccination. The non-profit Beta Cell Foundation began collecting data with an online database in early 2021, and they’ve reported findings from hundreds of respondents who’ve gotten one or both vaccine doses:

  • Most common side effects for the vaccines include tenderness, swelling, redness at the injection site. Some also reported feeling fatigued. Other side effects include headache, chills, fever, nausea, and muscle ache.
  • After receiving the 1st vaccine (Moderna or Pfizer), approximately 10-15% reported elevated blood sugars for a day or two following the first dose, and 23-29% after the second dose.
  • 42% saw elevated sugars for the J&J single-shot vaccine.
  • 2 percent reported lower blood sugars, and one person reported both higher and lower blood sugars (perhaps a combo of both, due to roller-coastering glucose levels).
  • After receiving the 2nd vaccine, approximately 30 percent reported elevated blood sugars, and less than 1 percent reported lower blood sugars.
  • No significant differences were reported based on the type of vaccine received, Moderna vs Pfizer.

Dr. Stephen Ponder, a pediatric endocrinologist at Baylor Scott & White Medical Center in Texas, is one of those people who believe people with T1D should absolutely be prioritized for the COVID-19 vaccine.

A frontline healthcare worker living with T1D himself for more than a half-century, Ponder got his first dose of the Pfizer-BioNTech vaccine on Dec. 21, 2020, and his second in early January.

Ponder said he had no reservations going into the COVID-19 vaccine, as he’d been following the medical reports and literature. He also knows people who’ve died as a result of COVID-19, and others who seem to have randomly gotten more sick than others.

“Already, I feel as if a weight has been lifted off my shoulders following the first dose,” he told DiabetesMine in late December.

He only experienced mild soreness in his arm after the injection, similar to a flu vaccine. But he was prepared.

“I’ve known other type 1 friends who experienced more blood sugar irregularities (after vaccination) than me, so I respect how our unique constitutional factors will influence how each of us responds,” he said. “But the prospect of not surviving COVID is an easy trade-off versus a sore arm or a few days of body aches, headache, and low-grade fever.”

He added, “I strongly encourage every eligible person to get theirs. Of course if a severe reaction occurs or has happened to a prior vaccine, it’s best to consult with a doctor who knows you.”

Larry Fisher, PhD, professor of family community medicine at UCSF, conducted a survey in late fall 2020 before any vaccine was yet available. The survey asked whether PWDs would get vaccinated if they could. He told DiabetesMine that 70 percent of more than 800 people surveyed said yes.

Of the 30 percent of survey respondents who said no, the leading reasons were:

  • do not trust vaccines in general
  • do not trust what the government does
  • potential long-term effects
  • not sure that the scientists know what they’re doing
  • previous personal experience with vaccines

“When you dig into that, the numbers are small,” Fisher said. “I think a better way to say it is that for type 1 and type 2 adults, about 70 percent said they were all for it. It’s likely higher once we see more people sharing stories about getting a vaccine.”

Fisher said more research and peer review will be happening in early 2021 before the full results of his survey are finalized and published.

Meanwhile, when DiabetesMine asked our online community in late December 2020 whether they would get vaccinated if they could, more than 300 people responded.

The majority said yes, but some did have concerns, mostly about the vaccines being so new and as yet untested in the long term.

There’s also some evidence that Black and Latinx people may be more hesitant to get the COVID-19 vaccine due to historical and current racism in healthcare, fueling mistrust in U.S. healthcare as a whole.

Here’s what some members of our community said about getting vaccinated:

Lisa Ridge in New Jersey commented: “Of course I will. As my primary doctor and endocrinologist recommend that I do. Diabetes is an at-risk condition for having more complications from COVID.”

Shawn Foster in Oregon wrote: “Yes. As a person with T1D and asthma, I’m at risk for worse complications with COVID. Vaccination is how we keep ourselves safe!”

But Jackie Reams in Virginia, who’s lived with T1D for 35 years, commented that she will not get the vaccine: “As a long term diabetic, I feel a vaccine without enough time for proper testing and not enough knowledge on long term effects is too risky.”

Angi Brown in Washington said: “No, but I don’t ever get the flu shot either. Would like to see the side effects, short and long term first.”

In California, T1D Reyna Wiekert said: “My endo has asked his patients to wait until he recommends taking it. Naturally, if we chose to get it on our own it’s fine, but for whatever reason he is recommending that we wait.”

A T1D who goes by the name Skyy Beene added: “Personally, no I am not getting it. According to my endo, I am at no higher risk than a non-diabetic for complications. Even if you get the vaccine, you still have to wear a mask and social distance. Will I in the future? Maybe, but at this time the unknown side effects are not worth it to me.”

While the CDC has warned that people may experience flu-like symptoms immediately following their vaccine shots, this is said to be short-lived and no cause for alarm.

A number of PWDs who’ve had access to a vaccine told DiabetesMine they experienced a sore arm and somewhat elevated blood sugars in the hours, and even a few days, following the shots.

T1D Emma Ford in Scotland, who works in an intensive care unit, said after her first dose she saw higher glucose readings for 36 hours — mostly between 180 and 255 mg/dL (10-14 mmol).

She kept her insulin pump on a 200 percent raised basal rate, taking insulin correction doses as needed every 3 hours.

T1D Kathy Wischhusen, who works at both a mental health treatment center and a residential psychiatric facility in Illinois, said she experienced some pain at the injection site, a headache, and higher blood sugars for 36 hours, in the 200s and 300s.

“I didn’t anticipate higher blood sugars, so that caught me off guard a bit, but once I put two and two together, I just increased my basal rates 15 to 20 percent,” she said.

In Delaware, Dr. Shara Bialo, a pediatric endocrinologist who is also a longtime T1D herself, got her first shot in December 2020. She reported a sore arm for 12 hours, but no glucose fluctuations or other side effects.

“This is the most exciting and elegant advancement in vaccine medicine to date,” she said. “The science behind mRNA technology is phenomenal and has been studied for decades. The only parts ‘rushed’ were the fundraising and the time the application usually sits in a pile waiting to be reviewed. I give it 5 stars and highly recommend.”

Paramedic Jennifer McLaughlin Davis in New York, who lives with T1D as well as asthma, was one of the early phase recipients of a COVID-19 vaccine in mid-December 2020. Her first dose of the Pfizer-BioNTech vaccine came Dec. 16, while her second was Jan. 6, 2021.

Aside from a sore arm after the first dose, Davis said she personally didn’t have any blood sugar effects afterward.

The second booster shot in early January brought a fever, chills, and mild headache, but no glaring blood sugar spikes.

“This has given me a tremendous sense of hope,” McLaughlin Davis told DiabetesMine, noting that several of her colleagues had tested positive for COVID-19 between the spring 2020 surge and year’s end.

“I have been waiting for the other shoe to drop for the last 9 months… of being infected. And the anxiety as a high-risk person was real for me working on the front lines,” she said.

That’s the same sentiment expressed by Poché in Louisiana, who works in a healthcare facility that doesn’t directly treat COVID-19 patients or have as high exposure to the coronavirus.

But with her kids attending in-person school and a husband serving in the military, she knows the significance the vaccine had for her.

On top of the clinical evidence, it was reading a firsthand account from another T1D who’d participated in a COVID-19 vaccine trial that further confirmed this would be the best decision.

While she appreciates the vaccine and believes it offers hope, she said that understands it can be a tough subject.

“And just because we get the vaccine doesn’t mean we 100 percent still can’t catch it or transmit it, so if we want to increase the odds for someone else’s health, we still need to wear a mask and social distance,” she said.