Desperate for treatment, Covid 'long haulers' push for 9/11-style health registry

“Very poor, disenfranchised people don’t choose, and very wealthy, educated people don’t choose either,” said Kavita Patel, a doctor with the Brookings Institution, a doctor who previously worked on medical records in Congress and the Obama White House had worked. “When you have a bell curve, you miss the insights you get from the outliers and the extremes, which is unacceptable when we need to understand these symptoms and patterns.”

An estimated one 10 percent Long-term complications will occur in people infected with the virus, but guidelines for diagnosis or treatment have not yet been established. Known symptoms, which can range from mild to severe, include brain fog, shortness of breath, and depression. These patients were often frustrated trying to get access to treatment and be eligible for benefits such as disability, unemployment, or employee compensation. It’s a situation that patient advocacy groups, labor unions, and medical experts claim is unsustainable, with nearly 33 million U.S. coronavirus cases and counts.

While several states are weighing Covid registers, New York lawmakers are the first to draft laws. Her bill is modeled on a city register of 9/11 survivors and first responders who developed chronic illnesses after the World Trade Center attacks. It would create a voluntary Covid registry that would help the New York City Health Department collect data to study trends or treatments that could benefit patients.

“We only saw the tip of the iceberg,” warned New York State Senator Brad Hoylman, the bill’s lead sponsor, who said members of his Manhattan district with “Long Covid” told him the virus’s ongoing effects would be difficult even made to leave their homes.

In Washington, lawmakers who support a federal registry argue that doing so would give scientists a more accurate picture of a growing national epidemic. New bipartisan laws would give government agencies nearly $ 100 million to collect data and educate doctors about Long Covid and $ 30 million to set up a database for patients to volunteer to share information about long-term symptoms. Sponsors are pushing for the legislation to be added to President Joe Biden’s infrastructure package or some other must-pass bill this year.

The idea of ​​a Covid registration has at least one high-profile supporter in the White House.

“I’m all for it,” said Anthony Fauci, Biden’s chief physician, to POLITICO, although he warned that such a register would have to think about “data protection issues”.

Union leaders in New York, one of the hardest-hit states by the pandemic, are behind the demand for a Covid register, noting that many of their members have never had the opportunity to work from home and are now suffering from persistent symptoms . Government working groups that were a key force in setting up a registry on Sept. 11 could have a similar leverage in tracking the long-term effects of Covid.

“We want to make sure we’re protecting the people who are evolving,” said Mario Cilento, president of the New York chapter of AFL-CIO.

Some Covid survivors may be reluctant to enroll because they do not trust the government with their medical information. Rep Don Beyer (D-Va.), The lead author of the registration laws in Congress, said the voluntary nature of his bill should help address any privacy concerns.

“You don’t have to register. You are doing it because you contribute to the health of the country and maybe you want to help yourself too, ”he said. Although Beyer’s bill has Republican cosponsors, he expects right-wing opposition in light of the recent outcry over the idea of ​​vaccination records that could prove someone has been vaccinated against Covid.

Patel, the Brookings Fellow, argues that the voluntary model is problematic because it puts too much burden on patients and gets too few enrollments, undermining research efforts. In cooperation with newly founded Covid patient advocacy groups such as the Survivor Corps, Patel is instead advocating a system that automatically retrieves information from electronic patient files and gives patients the option of logging out.

“The whole purpose is to get insights, trends and patterns,” she said. “You need as much of a representative sample as possible.”

The data on long-haul aircraft remains limited and inaccurate. It comes mainly from people hospitalized with an initial Covid-19 infection, which is a fraction of the people who have contracted the virus. Researchers suspect that even these data are not representative as they only capture those who have the time and resources to access ongoing care, which puts a large segment of traditionally marginalized communities at a disadvantage.

“We know next to nothing about post-Covid,” said Allison Navis, the lead clinical neurologist at Mount Sinai’s Post-Covid Clinic in New York. “We don’t have any studies of how common this is, let alone how long it takes.”

In this information vacuum, many patients find that doctors are quick to dismiss or misdiagnose their symptoms. It was a particular challenge for people who believe they might have contracted the virus at the beginning of the pandemic but couldn’t get an initial diagnosis because the tests weren’t widely available yet. Antibody tests that can detect a previous infection may not be conclusive for a negative result because the tests vary in accuracy and it is unclear how long an immune response to the virus can take.

Rep. Ann Kuster (D-N.H.), Undecided on a Covid register, said this is the situation her niece is now facing after dealing with debilitating symptoms for over a year. She couldn’t get a test after she got sick, and antibodies were undetectable when she was able to test them months later.

Since she did not have a positive Covid test, the doctors did not believe her that it was related to Covid, ”said Kuster. “She was frustrated and humiliated. Doctors have suggested that this may not be real and in some ways it is psychological. ”

The National Institutes of Health has already started Recruiting patients for studies on Long Covid using $ 1.15 billion from a stimulus package approved in December. The agency said it is trying to understand how common long-term Covid symptoms are, why some people are more susceptible, and whether people can develop new symptoms long after being infected.

However, working and patient advocacy groups say a national Covid register would be more comprehensive than these individual studies. While they are not yet pushing for a separate program to fund ongoing health care like Congress approved for World Trade Center survivors and first responders 10 years after the attacks, this could be the first step in that direction.

Even if Covid infections drop to their lowest level since September, the virus will still infect over 30,000 a day and is expected to continue circulating after the pandemic ends. That means more people may develop long-term symptoms that need diagnosis, treatment, and financial support.

“People are being exposed,” said Stuart Appelbaum, president of the retail, wholesale and department store union, who said many of its members are dealing with long-term symptoms. “We want to make sure that as much research as possible is done.”

Leave a Comment