Telehealth is something that has become common during the coronavirus pandemic. It allows people to see their physicians without stepping out of the home, drastically lowering the risk of exposure. For those who live with a rare disease or compromised immune system, this is extremely important. So the question arises: how do rare disease patients feel about telehealth? This Charcot-Marie-Tooth News article has the answer.
Telehealth Makes Appointments Easier
The National Organization for Rare Disorders (NORD) conducted multiple surveys to discover what rare disease patients really thought about telehealth. Over 800 patients and caregivers were involved with the surveys, and all results can be found in a report titled “Ensuring Access to Telehealth for Rare Diseases.”
Results illustrated rare disease patients’ approval and preference for telehealth. Not only does it lower the risk of contracting COVID-19, but it also brings other benefits. For example, they do not need to travel hours and hours to see a specialist, they can simply video call their doctor from their living room. This is extremely beneficial to the 39% of respondents who say they travel at least 60 miles for appointments.
It’s Being Used More
Telehealth was not something that many people considered before COVID-19 changed everything. In fact, only 0.01% of appointments were conducted through telehealth before March. By the middle of April, 69% of appointments were being done virtually. This number could grow, as 83% of respondents report that they were offered a virtual visit.
Do Rare Disease Patients Actually Like It?
According to NORD’s surveys, yes. Of the patients who utilized telehealth, 92% reported it to be a positive experience. Patients provided reasons such as no travel time, feeling safer, and being able to have more frequent appointments. Many applauded the accessibility of telehealth.
They also said that they hope telehealth remains an option even after the pandemic. 70% responded that they would like this when asked by NORD.
What Else Does Telehealth Do?
Telehealth not only offers more options in terms of doctors’ appointments, but it also opens up a door in terms of clinical trials. Many rare disease patients are interested in investigational medicine (88% according to NORD), but they run into challenges when trying to participate in trials, with distance and availability being two major obstacles.
Telehealth allows these patients to take part in clinical trials. One respondent talks about her daughter’s experience; her appointments were cancelled at Boston Children’s Hospital despite her declining health. Fortunately, telehealth allowed her to continue receiving the therapy and participating in the clinical trial. Had telehealth not been an option, the trial would have been delayed by an entire year.
The Future of Telehealth
Lawmakers are now focusing on telehealth beyond the pandemic, and NORD is working in tandem with other organizations to create policy statements that will guide them to make the best possible policy for rare disease patients.
While NORD is doing all that it can do, it urges others to write and call their senators to urge them to extend policies that allow the use of telehealth, protect rare disease patients, and remember rare disease patients in the next stimulus package.
Telehealth as made such an impact during the pandemic, and hopefully it will continue to benefit rare disease patients beyond COVID-19.
