For Some Rare Disease Patients, PPE Shortages Pose a Continued Threat

December 17, 2020 by Christen Aldrich

Filed under COVID-19 for Employers, COVID-19 for the Workforce

Last modified December 22, 2020

According to this article from STAT News, social distancing and mask-wearing are nothing new for people with rare diseases that raise their risk of deadly infections. “For my daughters, it has always been life and death,” said Laura Bonnell, whose two daughters have cystic fibrosis. When COVID hit and sent the U.S. into lockdown in March, Bonnell realized that her family’s supply of masks and disinfectant wipes was quickly running out.

Despite months of struggle and effort to bolster supplies, the U.S. continues to grapple with PPE shortages. Even for those who are able to stay home, the lack of PPE complicates day-to-day life for people with rare diseases. They don’t just need adequate PPE for themselves — anyone they live with or visit who goes out and potentially exposes themselves to COVID needs to be wearing it to decrease the risk of transmitting an infection.

“It’s not one individual that’s wearing the PPE — it’s also the 10 or 15 people who interact with them. The idea is to form a cocoon to protect them,” said Rishi Desai, a pediatric infectious disease specialist.

With no systemic solutions currently available, the most effective option is to conserve and recycle PPE, according to Desai. But for the patients and caregivers struggling to find PPE in the first place, like Bonnell’s family, they are left to their own devices to figure out how to protect themselves as the pandemic surges on.

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