Long COVID Health Justice Poll, March 15, 2025
The struggles for Long Haulers in getting care are real
Long COVID exposes the collapsing healthcare system in the U.S. — learning from a poll we shared on Long COVID Awareness Day. The poll was shared on Instagram, Facebook, X, Bluesky, and with Facebook Groups: COVID-19 Longhauler Advocacy Project, Survivor Corps, COVID-19 Long-Haulers Discussion Group, and our own group: Mask with Us. We received 171 responses in total. Below is the result showing the percentage of the participants who identified themselves with the six basic struggles.
1. HCW (Health Care Workers) won’t mask —39%
2. Availability (distance, delay) — 46%
3. Diagnostic obstacles — 56%
4. Treatability — 63%
5. Gaslighting — 60%
6. Cost — 54%
7. Others ( documented individually )
Our Analysis tells us that many Long COVID patients in the U.S. find their healthcare providers to be incompetent in diagnosing or treating the wide range of symptoms and conditions following an infection of SARS-CoV-2.
Victoria Coble( Founder, @covidactiongso on Instagram) wrote, “...quite frankly the gaslighting at year 5 is pretty intolerable given the vast amount of peer-reviewed literature available on both the acute phase of infection & LC.”
Getting a diagnosis for Long COVID is challenging because the requirement of PCR test proof from insurance companies makes it impossible for lots of patients to get a diagnosis or see a Long COVID specialist or join Long COVID clinics and studies.
Debbie Socolar ( on Facebook ) wrote, “One kind of diagnostic barrier some face: if you got sick before Cl9 testing was accessible, is lack of a positive test result posing a barrier to some LC care? And... are you now out of work because of LC, so don't have health coverage? So many potential obstacles to care!”
Long COVID patients also find healthcare inaccessible due to shortage of Long COVID providers and clinics, long wait times, health insurance denying coverage, and lack of infection control, especially a lack of mask requirements in healthcare facilities.
Karina Halevy( @occasionally.original on Instagram ) wrote, “I haven’t even been able to get a primary annual checkup because my hospital refused to implement N95 and HEPA protocols.”
Dr. Robi Tamargo( @drrobit on Instagram ) wrote, “In the early days, I experienced all seven. Now it’s primarily the short-term and long term $ costs associated with this disease.”
Amanda Clough( @builtfrmlove on Instagram ) wrote, “Number 1 (HCW won’t mask) is my biggest barrier to care. Are my symptoms bad enough to risk being exposed to COVID during the appointment because another infection actually would threaten my life. Beyond that it’s treatability and cost. My Long COVID specialists have resorted to sending me to the NIH RECOVER website to find my own treatment options which is wild considering 99% of RECOVER studies are observational in nature and do not offer treatments. Back in 2023 I asked to try an extended dose of Paxlovid and was denied. Last week it was finally offered to me only now my insurance no longer covers this drug and one month out of pocket will cost $12,000. Things are grim for sure.”
A research paper by U.S. top scientists on Long COVID estimated that 400 million people worldwide have experienced Long COVID. In the United States, 20 million Americans have been diagnosed with Long COVID including children and young people. Long COVID is a global health emergency.
Patients require quality healthcare to facilitate recovery, and this means access to safe and affordable services, evidence-based practices, patient-centered care, and continuity of care. But Long COVID patients face unthinkable obstacles, both physical and mental challenges, in the hostile healthcare system in the U.S. If our government truly wants to “make America healthy again,” it needs to expedite and expand Long COVID medical trials, fund research, and set infection control policies and guidance that prioritize airborne prevention.
