Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Early in the pandemic, the Global Healthy Living Foundation (GHLF) started an online COVID-19 Patient Support Program to provide news, information, advice, and support for people living with chronic illness. The program is free and you can still sign up here.

Members of our program have underlying health issues — such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns.

Here are the results of our poll on if our members have spoken with their health care providers about the COVID-19 vaccine and what they have recommended.

Conducted: January 19-21, 2021
Number of respondents: 655

What We Asked

With many people with underlying conditions (especially those who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions) becoming eligible for coronavirus (COVID-19) vaccines around the United States and across the world, we wanted to ask our members if they have spoken to their health care provider about getting the vaccine. Many of our members have expressed in the past that they will rely on their provider’s recommendation on whether to get the vaccine or not.

To better gauge whether our members are talking to their health care providers and to understand what their providers are recommending, we asked a few different questions.

We asked:

  • Have you spoken with your health care provider about whether you should get the COVID-19 vaccine?

Depending on their response, our members were asked different follow-up questions. If they had yet to speak with their provider, we asked:

  • Is there a reason you have not spoken to your health care provider yet?

If they had already spoken to their provider, we asked:

  • What kind of health care provider have you spoken with?
  • Did your provider recommend that you get the COVID-19 vaccine?

If the participant’s provider recommended against the getting the vaccine, we asked:

  • Why did your provider recommend against the COVID-19 vaccine?

For all those who did speak to their providers, we asked:

  • Are you going to take your provider’s recommendation to get the vaccine or not?

What We Learned

There were 655 respondents to the poll. Most of the respondents have already spoken to their providers about getting the vaccine (74 percent). The rest of the respondents (26 percent) had yet to speak to their provider about the vaccine.

The 169 respondents who had yet to speak to their provider had a few reasons. (They could select multiple reasons.) Here were the most common:

COVID-19 Patient Support Program Poll Haven't Talked to Provider About COVID-19 Vaccine

  • 31% said they felt they had enough information to make their own decision
  • 31% said they had an appointment coming up soon
  • 20% said they were waiting for their provider to contact them with more information

Beyond these, some patients have been unable to schedule an appointment with their provider (14 percent) and others said they do not talk to their provider about vaccines (3 percent).

Types of Providers

Among the respondents who did talk to their provider about getting a vaccine, we wanted to know which type of health care providers patients had spoken with. (They could select multiple providers.) The two most common were:

  • 65% asked their rheumatologist
  • 44% asked their general practitioner/primary care

Much fewer respondents consulted other types of providers:

  • 6% asked their pulmonologist
  • 4% asked their gastroenterologist
  • 3% asked their cardiologist
  • 3% asked their oncologist
  • 3% asked their allergist
  • 2% asked their pharmacist
  • 2% asked their nephrologist
  • 2% asked their dermatologist
  • 1% asked their endocrinologist

Provider Vaccine Recommendations

According to our respondents, most health care providers recommended that patients get the COVID-19 vaccine.

COVID-19 Patient Support Program Poll Provider Recommend COVID-19 Vaccine

  • 85% said their provider recommended the vaccine
  • 10% said their provider did not recommend the vaccine
  • 5% received mixed responses (one recommended it, another did not)

For those whose providers recommended against getting the vaccine, here are common reasons:

  • 56% said their provider is waiting for more information around safety concerns
  • 19% said their provider has concerns about how medication(s) relates to the vaccine
  • 14% said their provider thinks the vaccine is not safe for people with my condition(s)
  • 4% said it’s because they are allergic to one or more of the ingredients in the vaccine

Respondents were also able to list their own reason why they think their provider recommended against getting the vaccine. Several people expressed that they have had severe reactions to other vaccines in the past such as the flu and measles vaccines. Another common concern from providers was that autoimmune and immunocompromised patients were not included in clinical trials, leaving incomplete information for providers to give a recommendation.

Following a Providers’ COVID-19 Vaccine Recommendation

The vast majority of respondents are taking their providers’ recommendation to get the vaccine (80 percent). Here are the rest of the results:

COVID-19 Patient Support Program Poll Follow Provider Recommendation for COVID-19 Vaccine

  • 80% said yes, I am getting the vaccine
  • 9% said they have not decided whether to get the vaccine
  • 5% said they are waiting for another opinion
  • 5% said yes, I am not getting the vaccine

Only 1 percent said they decided against their provider’s recommendation of whether or not to get the vaccine.

What This Tells Us

There are a lot of confusing messages out there about the COVID-19 vaccine in people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions.

Overall, the rheumatology and public health community strongly encourages people to get vaccinated but acknowledges that shared decisions should be made between a patient and their provider.

The results of this poll show that members of our COVID-19 Patient Support Program have already engaged with — or hope to soon engage with — their health care provider for advice about the COVID-19 vaccine. Most health care providers are recommending the vaccine to their patients, and most patients are planning to get the vaccine when it is available to them.

We plan to do more research to better understand why some providers are not yet recommending the vaccine to certain patients.

If you have questions about the COVID-19 vaccine specific to your underlying health conditions, medications, or personal situation, make sure to talk to your doctor and, importantly, make sure you understand why they are making that recommendation.

To educate yourself and prepare for these conversations, stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions. Follow all of our COVID-19 vaccine coverage here.

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