Long COVID Awareness Day: Amplifying the Patient Voice

It’s been four years since COVID-19 was declared a national emergency, and while we’ve learned to live with the virus as an endemic, millions continue to suffer from long-term effects of a COVID-19 infection, with nearly one in five American adults who get COVID-19 report having Long COVID.¹ As many as four million Americans are out of work due to Long COVID, leading to nearly $200 billion in lost wages per year.² And yet, there is still much we don’t know about Long COVID.

Long COVID’s biggest threat lies in two areas:

1) Its ability to impact everyone, regardless of age or the severity of one’s original symptoms.³ The largest group of people living with Long COVID is younger than one might think. According to the CDC, U.S. adults ages 35-49 had the highest rates of Long COVID symptoms.⁴ While many healthy people in this age group tend to worry less about severe illness or hospitalization from a COVID-19 infection, there is a prevalent and concerning threat of long-term impacts. Plus, a recent study showed that by one’s third COVID-19 infection, patients have a 40% chance of developing long-term symptoms.⁵

2) Its lack of clear prognosis, with over 200 symptoms reported.⁶ ⁷ The heterogeneity of symptom presentation can make arriving at an official Long COVID diagnosis a difficult, frustrating road – not only for patients desperately seeking for answers, but for healthcare professionals who must navigate a minefield of potential symptoms that could be related to a recent COVID-19 infection.

There are many stories of patients who feel unheard, hopeless and left-behind, as they navigate their “new normal,” living with what can be devastating symptoms and significant limitations to their day-to-day activities.⁸ One such patient is Rachel, a wife and mother to three children, who was diagnosed with Long COVID in May 2021 after a COVID-19 infection two months prior that unbeknownst to her, would turn her life upside down. In the three years since her infection, Rachel has lost the ability to work and the energy to live her life fully, with her days defined by extreme fatigue, chronic pain and nausea, among other symptoms. Because there are over 200 symptoms reported for Long COVID, every patient is different. Learn more about Rachel’s story:

While there are no approved treatments for Long COVID, that doesn’t mean there isn’t anything we can do to protect ourselves. As it stands today, the only way to prevent Long COVID is to not become infected with the virus. Getting your COVID-19 vaccine can help protect you from Long COVID – research suggests there is a strong association between receiving the COVID-19 primary vaccination series and a reduced risk of receiving a diagnosis of Long COVID.⁹

We encourage everyone who is eligible to receive their updated COVID-19 vaccine. Remember, vaccination may not be for everyone, and it's important to make informed decisions regarding your health. Consult with healthcare providers if you have any concerns or questions about the COVID-19 vaccine.

¹https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm
²https://www.brookings.edu/articles/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/
³https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition
⁴https://www.cdc.gov/nchs/products/databriefs/db480.htm#section_2
⁵https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm
⁶https://www.nih.gov/news-events/nih-research-matters/immune-hormonal-features-long-covid#:~:text=More%20than%20200%20Long%20COVID,on%20to%20have%20persistent%20symptoms.
⁷Thaweethai T, Jolley SE, Karlson, et al; RECOVER Consortium Authors; RECOVER Consortium. Development of a definition of postacute sequelae of SARS-CoV-2 infection. JAMA. doi:10.1001/jama.2023.8823
⁸https://www.cdc.gov/mmwr/volumes/72/wr/mm7232a3.htm
⁹https://www.bmj.com/content/383/bmj-2023-076990