For patients with COVID-19, there are a handful of challenges that can make life much more difficult. The need to protect uninfected friends and family leaves the ill mostly alone throughout the course of their disease. Likewise, the symptoms of COVID-19 can make it harder for patients to represent themselves and work with their care team, especially when the patients are in intensive care.
To address these challenges and ensure that patients with COVID-19 are supported as effectively as possible, a handful of patient advocacy groups and nonprofits are rising to the task even as funding dries up and many charities struggle to stay in operation. Though there's still a long way to go in terms of improving the quality of life of patients with COVID-19, three advocacy groups stand out from the pack.
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Patient Advocate Foundation
Under normal conditions, Patient Advocate Foundation (PAF) helps patients get access to care by negotiating on their behalf when they can't pay for therapy. Since its founding in 1994, the PAF has worked with more than 142,000 patients, making it one of the largest advocacy groups of its kind. Now, the PAF's COVID-19 advocacy efforts are some of the most formidable in the nonprofit sector.
The foundation's basic approach to patient problems remains the same with COVID-19, meaning that it helps patients get information about and access to cutting-edge care techniques, as well as financial aid to pay for treatment. Importantly, the foundation also helps patients enroll in social programs and other support initiatives so that they don't need to shoulder as much of the burden while they are sick. In a nod to the widespread economic effects of the pandemic on patients with chronic diseases, the PAF also recently launched an emergency food assistance program for immunocompromised people who are at high risk of infection.
COVID Advocacy Exchange
In a collaboration between GRYT Health and Bristol Myers Squibb, (BMY 0.63%) COVID Advocacy Exchange is a brand-new group that provides a centralized hub for COVID-19 patient advocacy efforts. The Exchange's primary activity is a weekly educational webinar featuring patient advocates, patients, epidemiologists, doctors, social service providers, and scientists. During the webinar, the speakers discuss their perceived problem areas pertaining to patient advocacy within their specialty, with an eye toward improving outcomes for patients.
While the COVID Advocacy Exchange is brand-new, so far it has facilitated a series of critical discussions between advocacy groups and nonprofits covering different portions of the pandemic's effect on patients, thereby allowing these groups to distribute their resources more efficiently.
COVID Tech Connect
COVID-19 is a terrible disease for many reasons, but one of its most difficult aspects is that critically ill patients usually die alone. Patients often request a final conversation with their loved ones to say goodbye, and in many cases, the overworked healthcare providers tending to them in the intensive care unit offer their personal devices. This small mercy is far from guaranteed, however -- and that's where COVID Tech Connect comes in.
COVID Tech Connect's mission is simple -- provide hospitals and nursing homes with phones and tablets that they can distribute to critically ill patients so that the patients can stay in touch with their loved ones for as long as possible. The Connect's mandate also includes end-of-life advocacy for patients with COVID-19, especially pertaining to the problem of enforced isolation of those who are ill. Led by a combination of tech entrepreneurs, lawyers, patient advocates, and the head of palliative care at Emory University Healthcare, the COVID Tech Connect team is as diverse as it is experienced. With more than 20,000 devices distributed in the group's three-month history, it's clear that COVID Tech Connect has vigorously yet compassionately approached an under-appreciated issue in end-of-life care.
