Long COVID patients and families push Congress for more treatment options, research

WASHINGTON — Millions of people across the country are living with long COVID. The disease often leads to multiple symptoms like fatigue, brain fog and joint pain.

“It’s hard to see your child suffer and not know if there’s an end in sight because we don’t know,” said Nicole Heim, parent of long COVID patient.

Nicole Heim’s 16-year-old daughter was diagnosed with long COVID two years ago.

“It’s hard because children don’t get it. Her peers kind of all disappeared from her life and everything’s just been, it’s been turned upside down,” she said.

Thursday on Capitol Hill, Heim shared her daughter’s physical and mental toll.

“The mild depression and anxiety that she struggled with prior to COVID has only been intensified and has only led to increased panic attacks, and hospitalization for suicidal ideations,” said Heim during the congressional hearing.

One barrier is information. There are already hundreds of possible long COVID symptoms.

Heim wants the federal government to improve screening to help identify long COVID and increase access to treatment options.

“Allow physicians caring for long COVID patients to have telemedicine appointments in states they’re not licensed in for both the initial visit and follow-ups,” she said.

She also believes doctors should share what they’re learning.

“Some of this stuff does get better if you figure out the right treatment,” said Heim. “If they could just, you know, do something simple to get better, but they just don’t know about it yet.

During this congressional hearing, long COVID patient, Angela Meriquez Vázquez said doctors initially dismissed her symptoms.

“The medical neglect and discrimination I’ve faced contributed to my current level of disability and it continues to harm patients like me,” said Vázquez.

She told lawmakers about her concerns with the impact of this disease in minority communities.

“Low-income patients of color who are more likely to get COVID-19, long COVID and have the least access to healthcare are likely experiencing the greatest levels of disability and medical neglect and largely remain unidentified or unsupported with their new disability by the healthcare system, employers and schools,” she said.

Currently, the National Institutes of Health along with Children’s National Hospital in DC are tracking the effects of a COVID-19 infection in roughly 1,000 children and young adults over the next three years.

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