We, the people of the Long Covid (LC) support community have concerns about access to information, guidance, and science-based recommendations for COVID-19 and its many mutating variants. A recent Senate Finance Committee hearing with Health and Human Services (HHS) Secretary, Robert F. Kennedy Jr. offered little guidance. Two Republican senators, questioned RFK’s flip flop on covid vaccine policies, while Democratic senators, grilled the secretary about public health safety and transparency issues. Why does this matter to us? We care about loved ones who are at risk for acute covid infection and/or LC. We want them to have access to good information! We are also concerned with navigating symptoms and living our the best lives possible given LC’s ongoing chronic nature.
Trusted public health information sources are sending mixed messages. The HHS Secretary is now against the mRNA technology that saved lives during the pandemic. Some in his circle of advisors call the pandemic a hoax, and vaccine efficacy has become very controversial. At the end of the day, it remains unclear if covid boosters are (or will be) readily available for those who want one this fall. This is confusing for patients, physicians, and pharmacies. It is terrifying for people in certain demographics, like cancer, immunocompromised, and elderly patients. It is infuriating for some parents of school age children. Evidence-based research and larger trial cohorts are needed to study vaccine injury and efficacy.
In this video (10:59), American Medical Association (AMA), Chief Experience Officer, Todd Unger, and Sterling Professor or Immunology, Dr. Akiko Iwasaki discuss the latest about LC symptoms, treatments and the difficulty in diagnosing this chronic, complex condition. There is some evidence that vaccination helps to decrease the chances for getting Long Covid. Dr. Iwasaki describes a small study involving LC patients who received the covid vaccine with hope to improve symptoms. For the sixteen individuals in the study, ten showed improved symptoms; three had no change; and three experienced symptoms worsening (that was my experience). She advocates for a bigger study to be able to predict outcomes with more certainty. This requires funding.
In March, the Trump administration cancelled funding for LC research and closed the Office for Long Covid and Practice. Here is a quote from the Lancet: “The US Department of Health and Human Services (HSS) cancelled grants for multiple COVID-19 and long COVID research projects at both the NIH and the US Centers for Disease Control and Prevention (CDC) stating that they would “no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago” and that “HHS is prioritizing funding projects that will deliver on President Trump’s mandate to address our chronic disease epidemic”.
The AMA’s Andrea M. Garcia, J.D. & MPH estimates that about 8% of people (1 in 10) have experienced Long Covid at some point. Dr. Iwasaki often reiterates that the only way to avoid LC is not to get COVID-19 in the first place; every repeat infection increases the odds of LC. She recommends remaining aware of new variant trends and taking safety measures like masking and testing when sick.
Covid resources and information can be found with RECOVER (Researching Covid to Enhance Recovery). The World Health Organization (WHO) data, provides statistics, but with a caveat that not all states (or nations) are reporting consistently. They report that in the last 28 days there were 16,880 reported cases, and 780 covid deaths. The Center for Disease Control and Prevention (CDC) is now tracking “epidemic trends” using a measure to ascertain whether acute infections are growing, declining, or not changing. Currently, that data suggests that infections are increasing in 24 states; decreasing in 15 states; not changing in 7; and not estimated in the remaining states (for reasons unknown). The American Hospital Association offers a wealth of information and updates.
In closing, please use care as we enter the autumn season (aka flu season) that often comes with spikes in viral pathogens that can cause serious illness. Thank you for reading!
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions.
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