Rare Disease Groups in US Join in Plea for Care Across State Lines

Over 230 national organizations signed a letter urging all 50 U.S. state governors to “maintain and expand” flexibility with licensure requirements for the duration of the COVID-19 pandemic to ease access to care.

During the pandemic, governors used emergency authority to waive certain state licensure requirements, giving healthcare providers greater flexibility to treat patients across state lines. These licensure flexibilities allowed for greater access to care, especially for the many patients using telehealth to meet with specialists who reside in a different state.

“Improved access to telehealth services during the pandemic has been a lifeline for many in the rare disease community,” Peter Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), said in a press release.

“A 2020 NORD survey found that nearly 40% of rare disease patients travel more than 60 miles for their medical care, which means robust telehealth access, including access to providers across state lines, is critical,” Saltonstall added.

Over the last several months, however, many states have allowed these licensure flexibilities to expire with the end of COVID-19 public health emergency declarations. As a result, patients who relied on telehealth options across state lines may have to cancel their appointments or go in-person, with the risk that entails, according to the letter.

“Many of these patients relied on telehealth throughout the pandemic to see their specialists who reside in another state, made possible by licensure flexibilities enacted at the start of the pandemic, so as not to risk exposure to the virus and to maintain continuity of care,” it reads.

The letter encourages state governors to reinstate expired licensure flexibilities, or put in place new flexibilities to better meet patient needs throughout the pandemic.

“NORD has been working to ensure that state-based licensure flexibilities do not expire, so that rare disease patients can continue to have access to ongoing and necessary patient care while the threat of COVID-19 remains,” Saltonstall said.

NORD, the Alliance for Connected Care, and ALS Association convened the letter. Other signers include patient advocacy organizations, hospitals and healthcare systems, academic medical centers, institutes of higher education, and digital health companies.

“Patients and their families seek care across state lines for many reasons, and the licensure flexibilities put in place throughout the pandemic have been critical for expanding patient access to care, improving care coordination and continuity of care, and addressing workforce shortages,” said Krista Drobac, the executive director of the Alliance for Connected Care.

“State governors must act to ensure these flexibilities continue, and consider solutions to address the ongoing needs of patients both during the pandemic and in the future,” Drobac concluded.