At the Democratic convention last summer, Ms. Urquiza very publicly denounced Mr. Trump. But her group is nonpartisan, and with Mr. Biden now six months into his term and squarely in charge of the response, she and other activists are training their sights on him. She wrote to the president asking him to meet with her group’s board; the White House offered other officials instead.
“For the record, I feel ignored,” she said. “We all do.”
Many survivors and family members view the president as too eager to declare “independence from the virus,” as he did on July 4, and not attentive enough to the plight of “long haulers” who are desperate for financial and medical help.
Ms. Bishof, the former firefighter from Florida, said members of her long-haulers group cheered out loud when Senator Tim Kaine, Democrat of Virginia, described himself as a Covid long hauler during a Senate Health Committee hearing in March. “We were like, ‘Contact him now!’” she exclaimed.
Ms. Bishof was also instrumental in forming the Long Covid Alliance, a coalition of health and coronavirus-related groups, which scored a preliminary victory in April when Representatives Donald S. Beyer Jr., Democrat of Virginia, and Jack Bergman, Republican of Michigan, introduced bipartisan legislation authorizing $100 million for research and education into long-haul Covid.
Others have had a harder time getting buy-in from either side.
After her father died of Covid-19, Tara Krebbs, a former Republican from Phoenix who left the party before Mr. Trump was elected, reached out to Ms. Urquiza on Twitter. She was frustrated and angry, she said, and feeling alone. “There was a lot of silent grieving at first,” she said, “because Covid is such a political issue.”