Over the last year, patients’ experiences of COVID-19 have been hard to predict. A growing group of patients’ symptoms have persisted well beyond two-weeks and for up to 3 months in some cases. Isolated and afraid, many have found each other in online chat rooms looking for answers. 

Research shows that long haulers account for 10% of all cases, and with global cases surpassing 150 million, they are becoming more visible. We connected with researchers at IncellDx, a diagnostics and precision medicine company, to dive deeper into a program they have developed to support the long-hauler experience. They are now helping thousands of patients who have otherwise been turned away from their doctors and left with few options. Chris Meda, a health system leader with over 20 years experience joins us from IncellDx to share the untold stories of these patients. 

Understanding COVID long haulers 

Scientists have been looking for patterns hidden within the virus and our DNA to paint a more detailed picture of each person’s unique experience. Symptoms alone are not enough since they are highly variable and often resemble other diseases such as rheumatoid arthritis, autoimmune disorders, or fibromyalgia. Researchers at IncellDx turned to diagnostic tests and began developing a COVID long haulers index using AI and machine learning. In our first clip, Chris shares how their team began working with patients. 

Dr. Bruce Patterson, the lead scientist at IncellDx, and former head of Stanford University’s virology lab for over 10 years, did much of his training during the HIV AIDS crisis in the United States. In the early days of the pandemic, he noticed that the immune response in COVID long haulers patients mirrored what he had seen in the 1980’s. Rather than remaining a virus like influenza, coronavirus kicks the immune response into overdrive for some patients. 

The scientists found that while the immune profile of active COVID-19 was chaotic and unpredictable, there were some persistent patterns in long-haulers’ T-cells (one of the key players in your immune system). The recently released research found that these T cells may play a role in “prolonged viral RNA shedding”, leaving parts of the virus still in your body causing persistent symptoms. With this finding the team now had a diagnostic for long-haulers and a therapy ready for clinical trials.

Meeting patients where they are

When the team opened testing for long-haulers out of their small lab in August 2020, their website had 2,500 patients sign up in the first week alone. The clinical trials have been showing promising results, with patients coming off ventilators, and others seeing a decrease in symptoms. Alongside these clinical results, the patient community that’s formed around this work is equally as remarkable. In the clip below, Chris explains how patients have found each other during this time, and helps us understand their needs beyond medical treatment.

Hosting patient webinars, supporting a crowdfunding campaign, and helping patients navigate the system was above and beyond what the IncellDx team has ever done before, but these were all critical to the program’s success. Patients were often navigating a complex system of tests and medical jargon while dealing with symptoms like brain fog, exhaustion, and fatigue. Furthermore, many lost their jobs and were worried about whether they could afford treatments. While the pandemic has been a great equaliser, forcing lockdowns across the globe, it is clear that social inequalities are profoundly and unevenly impacting who becomes sick. Our healthcare system doesn’t exist in a vacuum, and the social determinants of health - poverty, environment, race, etc must become the core to how we deliver healthcare. 

Learning with physicians 

Physician communities have also been critical to navigating the evolving science during this pandemic, especially with the long hauler community. In the clip below Chris shares how their team has brought together doctors from across the United States to support patients, while also learning from them. 

As Chris shares, many patients had to be their own advocate when physicians didn’t believe their symptoms. These patients found online communities, and the IncellDx team was able to connect them to physicians in their growing network who were focused on supporting long haulers. The result? Patients felt supported, while physicians and scientists were able work together and navigate a steep learning curve. Could this collaborative health team model be the gold-standard in personalized medicine moving forward? 

The pandemic is a portal to holistic healthcare 

This story shows us the potential of diagnostics and personalized medicine, and the value of building community around healthcare. To learn more about the program, and collaborate with the IncellDx team visit www.covidlonghaulers.com.

Wellness is a collective mission, and the pandemic has taught us that we are stronger when we work together. The following passage from Arundhati Roy is a call to action for using our experiences over the last year to create a better post-COVID world.

“Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next. We can choose to walk through it, dragging the carcasses of our prejudice and hatred, our avarice, our data banks and dead ideas, our dead rivers and smoky skies behind us. Or we can walk through lightly, with little luggage, ready to imagine another world. And ready to fight for it.” 

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