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It may seem counterintuitive to talk about the positive outcomes of the pandemic, but it did give us some advancements in patient care and technology. One of those is expanded access to telemedicine. Before the pandemic, I needed telehealth options but was regularly denied them.

Unfortunately, as society attempts to move past the pandemic, telehealth options are starting to disappear. Patients with myasthenia gravis (MG), like me, still need telehealth care options.

It was jarring when all medical appointments and communications suddenly shifted to completely online in early 2020. It was the first time many of my doctors had telemedicine options. Yet, it was honestly a revelation for me. There were a few years when I lived in bed, and I am still mostly homebound. It can be very difficult and taxing to go to appointments. During the pandemic, telehealth helped me make it to more appointments and communicate with my doctors more often. I noticed how it helped me conserve energy. 

Read more about HCP care for MG

The biggest hurdle in the pre-pandemic to getting telehealth was insurance often did not cover it. That is why many specialists and medical professionals did not have telehealth options. There was also a lack of infrastructure and impetus to create these options for patients. The pandemic made it a requirement. Insurance companies had to cover them. That was the real sea change that made these accessible options I and many other patients had been asking about for years available.

Telehealth options cannot replace all appointments. For neurology patients, in-person exams are essential for disease monitoring. But having accessible options like televisits can supplement the times physical exams aren’t necessary. 

Unfortunately, as our government and officials have declared the pandemic “over,” these options are steadily becoming less accessible. The COVID pandemic is not over for those of us who are immunocompromised, homebound, and high-risk. Public spaces and medical offices are now even more dangerous than they have been in years because mask mandates are being dropped everywhere, as are other pandemic precautions. This is a serious risk for people like me. This is 1 of many reasons why we still need access to telemedicine. 

There are multiple doctors in the past I have had to stop seeing because physically getting to appointments with them is too challenging, such as doctors at research facilities. Many rare disease patients have to travel great distances to find specialists able to diagnose and treat them.

Having telehealth options to see those doctors make continuing care more feasible for many patients, including myself. Since the pandemic, my MG specialist has allowed me to do every other visit with her through video. Our visits with her entail a nearly 3-hour car ride each way, and we have to stay in a hotel (in a very expensive area). I am not able to do the trip in 1 day. My husband often has to take off work to do these trips. Having the option to do some appointments over video instead has made a huge difference for us.

Patients have become dependent and reliant on the technological advances and accessibility the pandemic gave us. We need doctors, insurance companies, medical facilities, etc., to continue offering accessible telemedicine wherever possible. Healthcare should be as accessible as possible for people with rare diseases, chronic conditions, and disabilities.