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Nov. 1, 2021

TOPIC: Press Releases, Advocacy

Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

Posted by Rohan Narayanan

Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care

Washington, DC – November 1, 2021 – Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the start of the pandemic for the duration of the federal public health emergency, to better address patient needs during the ongoing pandemic. The letter was convened by the Alliance for Connected Care, ALS Association, and National Organization for Rare Disorders (NORD), and includes a diverse mix of signers ranging from patient advocacy organizations, hospitals and health systems, academic medical centers, higher education, digital health companies, health information management associations, and many more.

During the public health emergency, governors across the country used emergency authority to waive some aspects of state licensure requirements to facilitate greater patient access to care, allowing providers more flexibility to treat patients across state lines. However, over the past few months, many states have allowed such flexibilities to expire along with the expiration of COVID-19 emergency declarations, leading to a reduction in access to vital care as the pandemic continues.

Many 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 through virtual options. These patients are now faced with canceling these vital appointments or risking an in-person visit and thus exposure to COVID-19. As such, this letter urges state governors to act now to ensure patients can access the care they need where they reside and when they need it, and outlines a set of principles to consider for licensure policies that should be in place right now to ensure patient access to care.

“Improved access to telehealth services during the pandemic has been a lifeline for many in the rare disease community,” said Peter Saltonstall, President and CEO, NORD.  “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. 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. NORD is proud to come together with this diverse coalition to prevent a reduction in access for patients, many of whom are still at high risk for COVID-19. Our state governments must heed the call of all stakeholders – from patient advocacy organizations to hospitals to digital health companies – and maintain access to vital health care providers now and into the future.”

“Telehealth has provided much-needed and cost-effective opportunities for people with ALS to access specialized ALS care,” said Neil Thakur, Chief Mission Officer of The ALS Association. “The debilitating nature of ALS — which robs people of their ability to move, eat, and eventually, breathe – makes travel very challenging. Because the number of ALS clinics is very limited, some people with ALS need to access care across state lines. Access to multidisciplinary care is critical and has been shown to extend life, which is significant considering the average life expectancy after ALS diagnosis is two to five years. We strongly urge Governors to take the steps needed to keep or restore access to specialized care for ALS and similar conditions.”

“We must build on the lessons learned from the pandemic and ensure patients can access care from their providers regardless of where they live, especially as the pandemic continues. 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. 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,” Krista Drobac, Executive Director, Alliance for Connected Care

The letter has been sent to all 50 governors across the United States. To read the full letter and view the list of organizations who signed on, click here.

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About the National Organization for Rare Disorders (NORD®)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.