Welcome to the latest edition of Investigative Roundup, highlighting some of the best investigative reporting on healthcare each week.
Patients Spend Thousands on Long COVID ‘Cure’
As COVID-19 continues to wreak havoc for many patients long after their initial symptoms subside, some are seeking help in expensive and experimental forms.
Mother Jones reported on the case of a previously healthy man in his 20s, identified only as Owen, who contracted a mild case of COVID-19 in April 2021. After just a few days of a runny nose, Owen thought he was out of the woods. But, several weeks later, Owen began experiencing difficulty breathing, extreme exhaustion, brain fog, and digestive issues so severe he lost nearly 80 pounds.
When emergency room visits and traditional tests run by doctors didn’t help, Owen turned to the internet, where he found online support groups for COVID long haulers on Facebook and other sites, Mother Jones reported.
There were dozens of social media groups dedicated to an approach from former Stanford virologist Bruce Patterson, MD, Mother Jones reported. Patterson says that his company IncellDX provides test and treatment protocols that address “the underlying immunologic causes of long-haul COVID.” Patterson believes that an overactivation of cytokines plays a significant role in activating the body’s immune system.
After a blood test, Patterson offers a treatment protocol that he describes as “being specifically tailored to a patient’s test results — often a combination of off-label medications including blood pressure medications, steroids, an HIV medication called maraviroc, and the controversial antiparasitic drug ivermectin,” Mother Jones reported.
For patients, the tests, follow-up consults, and physician fees can cost anywhere from about $200 to several hundred dollars. Some of the medications can cost as much as several thousand dollars per month.
Though some patients said the approach has cured them, Mother Jones reported that it “uncovered unusual behavior by the team, including offering medical advice and recruiting patients on YouTube and social media, failing to disclose financial conflicts of interest, and reports of inconsistencies in lab results.”
“Taken together, these practices have raised the suspicions of some scientists and patient advocates who worry IncellDX may be using unproven tests and treatments to take advantage of the desperation of 14,000 long Covid patients,” the article states.
Patterson says that his approach has worked for 85% of patients, Mother Jones reported. He and his colleague, Ram Yogendra, MD, told Mother Jones that they are far ahead of other doctors in terms of treating patients suffering from long COVID.
For Owen, about a month into his treatment protocol, with thousands of dollars spent and not much improvement, he discontinued it, Mother Jones reported. Now, 6 months after his symptoms first started, he’s beginning to feel better.
Dialysis Patients Have Been COVID-19’s ‘Perfect Victims’
In the three decades prior to the pandemic, the number of Americans with end-stage renal disease had quadrupled to about 810,000 in 2019, ProPublica reported, with some 70% of those patients relying on dialysis. While a “rare bright spot” among the spike in diagnoses had been a declining death rate, that was reversed when COVID-19 hit.
“Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years,” ProPublica wrote, adding, “They were COVID-19’s perfect victims.”
“It can’t help but feel like a massive failure when we have such a catastrophic loss of patients,” Michael Heung, MD, a clinical professor of nephrology at the University of Michigan, told ProPublica. “It speaks to just how bad this pandemic has been and how bad this disease is.”
The devastating numbers are representative of longstanding disparities that the pandemic has continued to shed greater light on.
Many dialysis patients have previously been diagnosed with diabetes, hypertension, or other underlying conditions, ProPublica reported. Their immune systems are severely compromised, many are old and poor, and they are also disproportionately Black.
Throughout the pandemic, many dialysis patients missed appointments they desperately needed for fear of infection, ProPublica reported. The federal government was slow to roll out vaccination at dialysis clinics. Some dialysis sites failed to adhere to strict infection control measures. At-home dialysis remains out of reach for many patients.
Epidemiologist Eric Weinhandl, PhD, told ProPublica that a new battle exists as cases surge due to the Omicron variant.
“Is there a plan? Because I think that there should be,” he told ProPublica. “I think this is getting pretty predictable. Every time COVID surges, you see the dialysis population’s excess mortality surge with it.”
Prenatal Tests Getting it Wrong
Yael Geller, 32, found out she was pregnant in November 2020 after a year of fertility treatments, the New York Times reported. She had a normal ultrasound, and felt comfortable to tell her 3-year-old son he would soon have a little brother or sister.
But, several weeks later, Geller’s doctor’s office called to say a prenatal blood test indicated her fetus might be missing part of a chromosome, which could lead to serious ailments and mental illness, the Times reported.
Geller told her husband that evening that they might be facing a decision on terminating the pregnancy, the Times reported.
Then, the next day brought different results.
Doctors used a long needle to retrieve a part of Geller’s placenta, which was tested and showed the initial result was incorrect, the Times reported. And Geller’s now six-month-old, Emmanuel, has no signs of the condition he screened positive for.
“In just over a decade, the tests have gone from laboratory experiments to an industry that serves more than a third of the pregnant women in America, luring major companies like Labcorp and Quest Diagnostics into the business, alongside many start-ups,” the Times wrote. “The tests initially looked for Down syndrome and worked very well. But as manufacturers tried to outsell each other, they began offering additional screenings for increasingly rare conditions.”
Now, they are usually wrong, the Times reported, citing its own investigation. In an analysis of the five most common microdeletion tests (those that screen for small missing pieces of chromosomes), for every 15 times they correctly find a problem, 85 times they are wrong, the Times reported.
Jennifer Henderson joined MedPage Today as an enterprise and investigative writer in Jan. 2021. She has covered the healthcare industry in NYC, life sciences and the business of law, among other areas.