They were vaccinated, but they aren’t sure if they are fully protected. They now wonder: When are we going to feel safe?
Terez Giuliana wrote her daughter an email in March 2020. She wrote “If I Die” in the subject line.
Giuliana, 65 years old, is from Philadelphia and has common variable immuno deficiency. This is a condition that causes inability to make antibodies. It leaves those with it vulnerable to infection.
Her health was at risk from Covid-19. Giuliana felt the need to organize her affairs as the virus spread through the United States.
She wrote down all her passwords and detailed who she wanted her jewelry to go to. Finally, she decided who would care for her cats in the event of her death.
She quit her job as a homeless outreach worker at Philadelphia’s Reading Terminal Market days later. To keep contact with others, she made a deal with her husband to do what was necessary to remain safe.
This meant that Giuliana had to stop going to the movies and seeing friends indoors, things that most people have given up in 2020.
Because her doctor cannot guarantee her that her vaccines will provide adequate protection against the coronavirus.
Giuliana stated, “Nothing has changed for me.” “I do resent it, and not being in a position to work breaks my heart. But I’m no help to anyone if I’m gone.”
Many people suffering from weakened immune systems have not experienced the same relief or return to normal that vaccines did for those who had no underlying medical conditions.
Giuliana is one example. Others aren’t sure how well the vaccine protects them. The clinical trials did not include immunocompromised patients. Some people are more at risk of complications due to their medical conditions if they contract the coronavirus. Some people fall in both of these categories.
Teresa M. Stallone (46), is a Chicago resident with psoriatic arthritis. This painful, autoimmune condition affects the skin, joints, and other areas. It is hard for her to know if her vaccines are working. But she finds it frustrating that people don’t show her the same respect in places like the grocery shop.
She said, “When I see people walking in without masks on, I try to avoid them.” “Some people’s carelessness is so frustrating, they don’t realize how it can affect other people.”
It can be very isolating to become immunocompromised during a pandemic. Jemela Williams, 40 of Kansas City, Missouri has sickle cell disease. This is a genetic red blood disorder that causes organ damage and pain due to a lack oxygen flow.
Williams was able to live as before she had vaccines and many of her friends started to re-live the things they had lost during the pandemic. She has not seen her best friend in person and doesn’t know when she will be able to travel again.
She said, “Ofcourse I don’t judge people for having fun,” It is frustrating, because you feel like you are being left behind. It feels like everyone else isn’t taking it as seriously as you.
“Nobody has ever been through this.”
There are many conditions that can cause weakened immunity. These include cancers, inherited genetic disorders, and immunosuppressant medication after transplants. According to the Centers for Disease Control and Prevention, 3 percent of adults are moderately or severely immunocompromised.
The Food and Drug Administration approved the use of a third dose Covid vaccines for certain immunocompromised patients in August after determining that they were at high risk of severe disease.
Experts say that although there are tests to measure antibodies following vaccinations, it is too early to know exactly how many are required for protection.
It’s not known how long they will be protected. This question is often asked by people with primary immunodeficiencies. It’s a category that includes more than 400 rare chronic conditions in which the body’s immune system fails to function properly or is absent, according Kathy Antilla (Vice President of Education for the Immune Deficiency Foundation), a non-profit advocacy organization for primary immunodeficiency communities.
“Nobody has ever experienced this anywhere in the world, let alone in our rare diseases community.” It’s difficult all around,” she stated.
Experts say that the best way to prevent the virus from spreading to the most vulnerable people in society is to fully immunize them.
Dr. David Thomas, Johns Hopkins Medicine’s director of infectious disease, said, “What if that person next to you has rheumatoid or kidney transplants? And what if they die?” You can help people with a weak immune system by getting vaccinated.
However, some immunocompromised patients have discovered that they can stand out by taking these precautions.
Jessica Jacobs (29), a writer and producer in Los Angeles, had been working as a freelancer over the summer when the delta variant began spreading. Only those who had been fully vaccinated could wear masks, but she was the only person in her office to do so.
She said that a coworker said to her, “I didn’t know whether you were vaccinated.” This is the worst insult because I can’t even be around unvaccinated people.
How do you show support?
Friends, family, and institutions can assist vulnerable people in many ways.
Stallone stated that this “brought to light what’s possible,” and added that she hoped the accommodations would continue beyond the pandemic. “Even special hours stores did not allow me to shop with seniors, because my doctor wrote me a note allowing me to do so.
Antilla stated that anxiety at this stage in the pandemic remains very real for many people with compromised immunity and encouraged those around them not to pressure them.
If you are with someone who states, “I have this diagnosis. I don’t feel secure doing A, B C, or D,” please be supportive. You don’t need to be able to understand. She said, “Just be supportive.”
Jacobs agreed.
She said, “I would rather have someone ask me a million ignorant questions than to not care and endanger my family and me.”
A group for sickle cell patients offers comfort. The group met at the local hospital once a month before the pandemic. It now meets weekly via Zoom, which means it has members from all over the world, including London and Africa.
She said, “We’ve just created such a family.” “As soon the numbers go down, or something is better for us, we can’t stop hugsing each other.”
Giuliana feels most supported by people who accept her “calculated risk” since she was vaccinated.
She had to quit her job as a homeless outreach worker, but she took up a volunteer role serving meals outdoors to those in need. She can’t attend indoor events, but she will go outside with her great-nieces or great-nephews to visit people in need.
She isn’t sure when she will feel safe again, but she hopes so. She says she is grateful for all those who help her stay healthy.
She said that Covid made her realize how vulnerable she was, not only to Covid but to everyone. “I am grateful to everyone who wears masks every day.”
CORRECTION (Oct. 23, 20,21, 9:35 AM. ET: An earlier version of this article misrepresented the frequency with which a support group for sickle cell disease attended by Jemela was present in person. It met at a hospital every other week, and not monthly.
