By MICHAEL MILLENSON
When powerful politicians confront a life-threatening diagnosis, it can change policy priorities.
In addition to President Trump and a slew of top aides, five U.S. senators and 15 members of the House of Representatives have now tested positive or been presumed positive in tests for Covid-19 as of Oct. 5, according to a running tally by National Public Radio (NPR).
In that light, the recent burst of coronavirus infections could accelerate three significant innovations affecting every Covid-19 survivor.
1) Post-Covid Clinics
Even seemingly mild encounters with the coronavirus can trigger a cascade of lingering health consequences. While “there is no consensus definition of post-acute Covid-19,” noted an Oct. 5 JAMA commentary, symptoms that have been reported include joint pain, chest pain, fatigue, labored breathing and organ dysfunction “involving primarily the heart, lungs and brain.”
A survey by Survivor Corps, a patient support group, and the Indiana University School of Medicine found that Covid “long haulers” often suffer from “painful symptoms…that some physicians are unable or unwilling to help patients manage.” A similar survey by the Body Politic Covid-19 Support Group concluded that Covid long-haulers face “stigma and lack of understanding [that] compromise access to health care and quality of support.”
“It’s a nightmare,” a coronavirus survivor in her 40s told me. (Like other long-haulers, she asked not to be named.)
The woman recalled going to the emergency room (ER) with tightness in her chest and trouble breathing. If someone barely touched her stomach, she screamed in pain. Her primary care physician eventually recommended she see a cardiologist and a gastroenterologist, but there was neither coordination nor urgency. As she waited a month for the gastroenterologist, “my stomach was bloating like I was pregnant, and it was hard to breathe. No one was listening to me.”
Enter “Post-Covid,” or “Covid-19 Recovery” clinics. The centers aim “to bring together medical professionals across a broad spectrum,” from subspecialists to social workers, according to a recent article in Kaiser Health News. Based on the number of positive tests in the United States, a half million people could already have long-lasting coronavirus symptoms, one expert said.
One of the first and largest of these clinics was opened by New York’s Mount Sinai Health System in May. A partial list of others includes the Hackensack Meridian Health System in New Jersey, the University of Pennsylvania Health System and University of California-San Francisco.
But while post-Covid centers promise more holistic, coordinated and cost-effective care, innovation doesn’t guarantee adequate insurance reimbursement for financially struggling hospitals.
That’s where political power comes in. With some 20 Congressional Covid-19 survivors (and counting?), as well as the president, there’s an impressive, bipartisan group potentially pushing to make certain Covid long-haulers can access the services they need.
2) Patient-generated health data
One way long-haulers have tried to fight what they’ve felt was physician indifference is by generating their own data at home.
The woman in her 40s quoted above says she uses a pulse oximeter, a blood pressure monitor and a thermometer, as well using the Apple Watch to monitor heart rate. A Body Politic member in his 30s told me, “I had to literally bring in my own heart rate monitor and demonstrate my elevated heart rate in real time to be taken seriously.”
Meanwhile, a long-hauler in her 30s, a certified physician assistant, says she’s deployed a variety of devices to avoid what could have been multiple trips to the ER.
“I have episodes of air hunger now, where I feel like I’m suffocating,” the woman said. When that happens, she checks her blood oxygen level and often finds, “it may feel like you’re not breathing, but you are.”
A recent commentary in the Mayo Clinic Proceedings argued that use of patient-generated data must become routine in primary care.
The authors wrote, “Integration of technology-assisted tools, including symptom-checker apps, Web-based screeners and wearable devices, into health systems’ electronic health records (EHRs) holds promise to make the most of every precious encounter between patients and physicians.”
Covid restrictions accelerated eased payment rules for telehealth visits. A push for mainstreaming of patient-generated health data into the EHR seems inevitable. The political momentum will be aided both by politicians’ personal experience and the encouragement of clout-heavy companies in the self-monitoring space, including Apple, Fitbit (which has agreed to merge with Google) and others.
3) Patients as research partners
When AIDS activist Larry Kramer died in July, Dr. Anthony Fauci recalled how the two had gone from fierce foes to fast friends as Fauci, in the 1980s and now head of the National Institute of Allergy and Infectious Diseases, came to understand the crucial role patients can play in successful research.
That realization throughout the National Institutes of Health (NIH) was reflected in the September NIH Director’s Blog. NIH director Dr. Francis Collins called the long-haulers organized by Body Politic “citizen scientists,” praised their “talent and creativity” and pointedly mentioned the group meeting with the Centers for Disease Control and Prevention (CDC) and the World Health Organization.
Separately, the independent Patient-Centered Outcomes Research Institute (PCORI) has already year pumped out nine separate Covid-related grants. Taken together, the NIH, CDC and PCORI actions constitute a clear signal by the politically attuned scientific elite that the patient-as-partner is central to Covid-19 research related to prevention, treatment and community outreach.
President Trump called what he’d learned about Covid-19 after being infected “the real school.” Meanwhile, the virus has gradually spread through Republican- and Democratic-leaning states alike. If there’s a silver lining, it’s that recent lessons learned could now spur a bipartisan consensus to support innovations addressing the needs of survivors.
Michael Millenson is a frequent THCB Contributor, the author of Demanding Medical Excellence: Doctors and Accountability in the Information Age, President of Health Quality Advisors LLC and an adjunct associate professor of medicine at Northwestern University
This post originally appeared on Forbes here.