Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.
It’s been over three years since the World Health Organization declared COVID-19 a global pandemic. In that time, we’ve been asking our community through quick polls to our Patient Support Program about their experience living through this time including masking practices, vaccination plans, mental health, and more. As safety guidelines changed from the CDC, we would ask our community how safe they felt and how they plan to follow the recommendations.
Now, as COVID-19 mandates and restrictions end in countries throughout the world, we wanted to learn more about what precautions people who live with chronic illness are taking and what their COVID action plan and experience looks like.
In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight what our community is thinking and feeling when it comes to COVID now. We asked about experience with getting COVID, its symptoms, access to boosters, and masking practices.
As part of the poll, we had a free response section where participants could elaborate on their thoughts, and one common theme that emerged was around “common sense” or recognizing that people with chronic conditions may be more vulnerable to COVID. There was an overall sense that there is a need for greater awareness:
- “Support and a voice for the immunocompromised in terms of advocacy and representation among health care sectors and political leadership so we are not left to our devices and left to live out high-risk or isolated lives just to maintain health.”
- “I think public service messages need to say: ‘If you are coughing or sneezing or feel unwell, please stay home. If you can’t, then wear a mask, so you don’t spread your sickness around! If people did this, we could reduce lots of illness.”
- “There needs to be more education for the general population on continuing to protect those at risk including the immunocompromised.”
- “Awareness for people who still need to be careful. For example, theater companies that have one show a week where people need to wear masks if they want to come. Businesses maintaining outdoor spaces for eating. Recreation classes held outside for seniors.”
Here are other key insights from the poll.
Half of people in our poll have tested positive for COVID
Of the 2,722 respondents, 52 percent said they have had and/or tested positive for COVID-19. For those who said yes, only 38 percent said their symptoms lasted longer than four weeks.
Many mask indoors and want mask mandates in medical settings
Majority continue to mask indoors and from the free response section, we learned an overwhelming amount of people want masks in public spaces, especially in health care facilities. There were more than 1,000 responses pertaining to masking.
Participants were able to select all that apply when asked about when they wear a mask to protect themselves from COVID-19:
- 62% public transportation
- 58% indoor public space
- 53% indoor event
- 35% socializing indoors
- 28% I don’t wear masks anywhere
- 15% outdoor event
- 13% outdoor public space
- 12% socializing outdoors
In the free response section of the poll, many mentioned wanting mask mandates in health care facilities and public spaces:
- “I would like to see mask use continue in medical care settings. In my area the hospital systems have lifted their requirements that all medical staff and visitors wear masks.… the policy states that if a patient asks providers to mask they will. I don’t want to have to ask them to do it, although I will. I want them to take precautions to minimize the spread of COVID-19 and other illnesses all the time.”
- “Mask mandates [should] be kept in place in infusion centers and offices where there are high proportion of immunosuppressed individuals. We have no choice; we have to attend these appointments.”
- “Minimally would like health care providers to mask with K/N 95 when providing service if asked by patient who is immunocompromised or immunosuppressed, including elderly, or protecting someone who is.”
- “If I were to pick one measure of greatest importance, it would be masking (for workers and patients) in health care settings. Those of us at greatest risk for poor outcomes with COVID, do not have the option to avoid seeking medical care, and should not have to risk exposure to COVID to do so.”
- “Mandatory masking for staff and patients in health care settings, especially high-risk areas like ER, cancer/infusion centers, one-on-one contact of staff with patients.”
- “Masking on public transit, hospitals and medical centers, and drug stores. My personal belief is that masking should still occur at essential service industries like hair salon and barbers, drug stores, and grocery stores so that all people feel safe.”
- “I would like to see others mask indoors to protect the vulnerable in hospitals, public transit of all types, theaters, concerts, outdoor events where there is crowding, church while singing.”
Treatment access and affordability, vaccines, and tests matter
As part of the poll, we asked about access to COVID boosters and tests. We learned 97 percent have access to COVID-19 boosters where they live. In the free response section, many shared wanting more education and public information around boosters:
- “I would like to see a booster informational website for immunocompromised that would give information on boosters and when to take them and at how many intervals and as they are developed how to know when you are due. After shot number four I started to get confused with timelines and what to expect and when calling my local pharmacy it was not clear to them either.”
- “The Omicron booster is all but forgotten since it got minimal to no public encouragement to receive it. I think they should do an all hands-on deck public education and push for this important booster, even if it is months late.”
- “Boosters made widely available and highly encouraged.”
With the end of the COVID-19 public health emergencies, things like COVID rapid tests may not be as available as they once were so we wanted to learn more about how people with chronic disease are reacting to potential price changes. About half are willing to pay for a COVID test (54 percent), and about a quarter are not willing (24 percent) and a quarter are not sure (22 percent). Many elaborated in the free response section that while they are willing to pay, they believe tests should be free and easily accessible.
- “Easy access to COVID tests and testing, so people will continue to test without worrying about barriers or costs, particularly in underprivileged communities.”
- “I would pay to get a COVID test because I believe it is my duty to others, to isolate/mask up, and not attend in person appointments or gatherings when COVID positive. I would also pay for a test as part of a test-to-treat system for access to Paxlovid. I do, however, strongly believe that tests should be free so that the general public will continue to test when symptomatic or prior to visits with high-risk Keeping testing barrier free is essential to keeping any public engagement in mitigating COVID risks at this point in the pandemic.”
- “Free tests, especially in the winter months.”
- “Free and easily accessible take home (RAT) COVID tests.”
Many also stressed the importance of access to and innovation of treatments
- “Access to preventative antibody treatment.”
- “Access to antiviral medications.”
- “Better treatment for COVID.”
- “Better, more definitive and effective treatments.”
The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.
To 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.
About the Patient Support Program Quick Poll
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. You can participate in ongoing poll by joining the support program here.