NORD Report: COVID-19 Telehealth Surge Especially Important for People With Rare Diseases


Telehealth during the COVID-19 pandemic has been especially important to patients with rare disorders, many of which are autoimmune diseases, according to a recent report from the National Organization for Rare Disorders.

Millions of Americans need continued access to telehealth services, especially those with rare disorders, many of which are autoimmune diseases, according to the National Organization for Rare Disorders (NORD).

“Currently, the Trump administration, Congress and state governments are trying to decide which changes to telehealth should be made permanent beyond the COVID-19 public health emergency,” NORD said in a new report, Ensuring Access to Telehealth for Rare Diseases. “For the more than 25 million Americans with rare and undiagnosed diseases, having consistent access to healthcare providers is critical to their immediate and long-term health.”

NORD is an umbrella organization for about 300 patient advocacy organizations. The 1983 Orphan Drug Act defined a rare disease as one that affects less than 200,000 people in the United States. By some estimates, there are some 7,000 such diseases, and among the autoimmune disorders included in the NORD database of rare disorders are Balo Disease, a rare variant of multiple sclerosis; Evans syndrome, an autoimmune disorder that attacks red and white blood cells; and Addison's disease, which about 75% of the time is the result of autoimmunity.

Often people with rare disorders depend on a small group of physicians and other clinicians who are knowledgeable about their disease. Prior to the pandemic that would often mean traveling long geographic distances to receive care.

According to the NORD report, the organization's recent surveys of 800 rare disease patients found that, since the start of the coronavirus pandemic, more than 83% had been offered a telehealth visit by their healthcare provider and 88% accepted those visits.

Of those who had a telehealth visit, 92% described it as a positive experience, and 70% said they would like the option of telehealth for future medical appointments.

“Fortunately, during this time period, telehealth emerged as an increasingly common way for people to safely access medical care without risking exposure to the virus,” says the report.

In addition to preventing exposure to COVID-19, telehealth helps access to care by removing the transportation barriers that many rare disease patients face, suggests the NORD report.

“The burden of travel is so great, that 17% have moved or are considering relocation to be closer to treatment to manage their rare disorder over the long term,” NORD said.

The federal government took important steps to temporarily expand coverage for telehealth services during the pandemic, including removing barriers for Medicare patients. Plus, most states are allowing out-of-state healthcare providers in good standing to practice telehealth across state lines.Many private insurers have also temporarily expanded access to telehealth services.

NORD is advocating for those changes to become permanent. “Many telehealth improvements are time-limited to the COVID-19 public health emergency declaration….our continued advocacy can help on this issue so that the positive changes that we have seen during the pandemic will endure after it ends,” the organization said.

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