Where you live can determine if you have access to the health care you need or you have to drive hours to get it.
In the United States, home to an estimated 30 million people who have rare diseases, this inequity lies hidden in the nation’s vast agricultural landscape. Not only are specialists hard to come by in rural regions, but even primary care physicians are in short supply, according to the National Rural Health Association.
Statistics and real-life stories from patients confirm the shortage, said Heidi Ross, Director of Policy, National Organization for Rare Disorders (NORD).
“We receive many emails from people in rural locations in the United States, and in remote locations around the world, who are seeking diagnosis or treatment and have no medical expert in their area,” Ross said. “We often hear from patients or caregivers who travel long distances, at considerable expense, to connect with medical experts at teaching hospitals in U.S. cities.”
The Graham family is one such family. They travel over 600 miles from their home in Roundup, Montana to Denver, Colorado, so their son Mick can be treated for severe hemophilia A. In some cases, the trek is even further.
When care is far away, everything takes longer: diagnosis, regular visits and emergency care.
“When you don’t get your health care taken care of, you wind up with disease presentations that are much farther along,” said Dr. Joseph Florence, a physician and professor at Eastern Tennessee State University’s Quillen College of Medicine, in an article for the Association of American Medical Colleges.
Access to telehealth or telemedicine, which grew dramatically during the COVID-19 pandemic, has been a game-changer, said Ross.
“Telehealth allows the community to access care remotely, especially with so many who are afraid to travel due to COVID. Telehealth also eases a financial burden. For those who may have not been able to afford to travel far, did not have access to a reliable vehicle or are without someone to travel with them, telehealth now provides greater access for care.”
Surveys conducted by NORD in 2020 found that 83% had been offered a telehealth visit and a vast majority accepted. Of those who had a video visit, 92% described it as a positive experience, and 70% of respondents wanted the option for future medical appointments.
In addition to online medical care, virtual support communities have flourished since the pandemic limited in-person gatherings.
"For people who have these unique situations, sometimes the Internet is the only way to reach out widely to determine who else might be suffering,” said Ritu Agarwal, Founding Director of the University of Maryland’s Center for Health Information and Decision Systems. “The power of being able to connect with others like yourself, is enormous.”