People dealing with long-lasting symptoms of COVID-19 are now teaming up to show medical professionals and researchers the need for a Post COVID-19 Care Clinic (PCCC) in Arizona.
Arizona is one of 18 states without a PCCC, according to Survivor Corps.
“We had already–hopefully–our largest peak of cases, which means our largest batch of long haulers are (sic) going to be starting to appear in the next several months,” said Sebrina Mertz Shaw, a COVID-19 long hauler.
Arizona’s Family has followed Shaw’s story since last summer when she first tested positive for the virus. Since then, she has suffered from long-lasting symptoms such as lack of taste and smell and chronic headaches.
A woman in Utah, Lisa O’Brien, reached out to Shaw after watching the story we aired with Shaw at the end of January about how other states are opening up PCCCs.
“She reached out to me because she has been successful in Utah in regards to contacting other individuals who are long haulers in the area there,” said Shaw. “She and I have been going back and forth for a few weeks now and are in the process of trying to gather other survivors, other long haulers that are at least 30 days out from their positive infection and still having symptoms.”
“I’m hopeful that we’re going to be able to get them to see this need and create more resources and more treatment programs for the Arizona people,” said O’Brien.
O’Brien is coming up on one year since becoming sick and still has heart problems, fatigue and cognitive impairment. In June, she started a Facebook group for other Utahns with long-haul symptoms.
“I started the Utah COVID long haulers group back in June, mostly because I was tired of doctors not believing me,” O’Brien explained. “At that point, we were invisible, so I needed to show that it was going to be an issue, plus I didn’t want anyone else to go through it alone because that’s terrifying.”
Soon, she garnered the attention of local media in Utah, and then medical professionals started taking notice. In November, a team of researchers in Utah held a Zoom meeting with O’Brien and four other long haulers.
“He [a researcher] was like, ‘Well, we’re going to have to show a need for it.’ And my friend was like, ‘I don’t know if you know this or not, but when these clinics are opening, they’re getting booked out months because there’s (sic) so many people,'” O’Brien said.
By that point, O’Brien’s Facebook group had more than 2,600 members all experiencing long-lasting symptoms.
Now, she says the University of Utah Health is in the process of opening up a PCCC, where several specialists will be under one roof and helping a patient together.
“Our symptoms are all over the place. We’ve got a lot of us are dealing with heart issues, and blood pressure issues, and neurological issues and we’re having to make all of these appointments,” explained O’Brien.
The two women have now started a Facebook group for Arizonans with long-haul symptoms and hope to get at least 400-500 members to prove to medical professionals and researchers that a clinic is needed.
“The more patients that we have, or potential patients, are for a database essentially of patients for any doctors to come in or specialists to come in for a clinic,” Shaw said. “In order to show a need for a clinic, we need to show that there’s enough of us here in Arizona that would benefit from those services and require that type of care.”