From December 1-4, 2020, Reuters hosted a virtual conference called Pharma & Patient USA 2020. The primary focus of this event was furthering patient centricity in disease development as well as overall collaboration between patients and pharmaceutical companies. The event was primarily attended by both patient advocates and leaders as well as industry representatives and stakeholders seeking to work together to engage with patients and place their needs front and center.
Patient Worthy had the privilege of attending several sessions to learn more about what the future of this collaboration will look like in a world still in the grip of the coronavirus/COVID-19 pandemic.
One of the first sessions of the event, titled “Your scorecard: patient group feedback to pharma’s COVID-19 response” specifically focused on the impacts of COVID-19 on the patient community and what the drug industry has done to compensate.
COVID-19
A big need has been communicating with the patient community during the pandemic. Virtual methods of communications such as support group calls were essential for patient organizations such as The Ehlers-Danlos Society. Lara Bloom says that it became clear early on that patients were desperate for information, so the organization added a COVID-focused page to their site that served as a one-stop resource. As shutdowns began, patients lost access to critical interventions such as physical therapy; as a result, the society published instructions that allowed patients to begin exercising at home. The group also conducted surveys, revealing the mental health challenges of the pandemic as well as other factors.
Amy Niles of the PAN Foundation says that they have conducted a survey among seniors, and the organization launched a program of financial assistance for COVID-19 patients who were stuck in quarantine. Recipients could get up to $300 to support themselves. The program is still ongoing today, and many of the recipients were seniors with below poverty-level incomes. PAN communicated weekly with their patients to provide essential tips and connect them to resources.
Karen Deitemeyer, who volunteers for the US COPD Coalition, the American Lung Association (ALA), and the COPD Foundation, says that they have been focusing on surveys as well as informational webinars, and COPD patients voiced their concerns about getting COVID as they are at high risk for severe disease. Patients also had concerns about treatment access and breathing while trying to wear a mask. Access to pulmonary rehab and other therapies have also been a challenge for the COPD community.
Molly MacDonald of The Pink Fund said that many members of their community opted out of work because they are immunocompromised. They have also started a financial support program and Facebook live sessions to help spread critical info. Telehealth has become a vital resource.
Amy says that a top priority in the pandemic and beyond needs to be lowering the out of pocket costs for patients, especially for Medicare recipients, who often do not qualify for financial assistance programs as offered by drug companies. As deductibles reset in the coming year, massive bills will soon be piling up, and patient orgs don’t have the resources to provide sufficient relief. Programs that can spread the cost out throughout the year could help.
Treatment adherence has been more difficult than ever during the pandemic, but COVID wasn’t the cause of these issues. Ultimately, changes to financial assistance programs and other improvements, such as enhancing telehealth options and treatment deliveries, are just some of the ways that pharma companies and the broader health system can help improve the situation for patients.
Stay tuned for more stories about Pharma & Patient USA 2020.
