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In the spring of 2020, the usual way of life for the entire nation changed when the COVID-19 pandemic hit the United States.

While Hemophilia Federation of America quickly responded by providing resources and information to the bleeding disorders community, the organization also wanted to better understand how the community was affected. HFA conducted an online survey among bleeding disorders patients and their families to discover the impact on mental health, access to care and education, and more. The results were eye opening.

2020 Survey Results

2020 COVID-19 Mental Health & Coping Survey Results

Nationally many schools and businesses closed or limited hours in the spring in order to stop the spread of the novel virus. Among the bleeding disorders community, nearly half had children suddenly learning at home or the adult patients or caregivers discovered they too would be learning at home. In addition to education, employment was affected due to closings 鈥 in the bleeding disorders community, 28% lost their job.

In addition to the changes to education and employment, the changes in access to care for patients and their families was perhaps more troublesome. Fourteen percent were unable to get the medication or treatment they needed and 33% were unable to see their provider. Most healthcare providers quickly shifted to telehealth appointments.

The largest concern with the global pandemic was on the mental health of U.S. citizens and perhaps even more on patients with chronic illness, who may sometimes be at greater risk of mental health concerns. The survey showed nearly 75% experienced mental health issues. But to help manage these issues, patients and caregivers turned to connecting with friends online, taking care of their bodies with exercise, reconnecting with hobbies and contacting mental health providers.

View the 2020 Survey Results


HFA COVID Hub

HFA COVID Vaccine Forum


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