column logo Alithea Athans

Living with cold agglutinin disease (CAD) means a lot of doctor appointments. I have seen various doctors for many different reasons, mostly having to do with CAD.

Back in the better days, pre-COVID, it was relatively easy to see my doctors. Appointments were made within a decent time frame. Since then, things have changed drastically in the healthcare arena, some for the better and some for the worse. The COVID era brought about the advent of “telehealth.” Some started prior to that, but it became the rule in recent years because it is convenient and necessary. Now things are starting to slip back into the “old” ways in many cases, to the detriment of patients.

There are so many people that suffer from debilitating diseases that prevent them from physically getting to the doctor’s office. Telehealth was a lifesaver for them, and these changes that are coming now that the COVID emergency is ending will have a huge impact on them.


Continue Reading

I didn’t realize how complicated this mess was becoming until I did some research into the pending changes. It boils down to oversight, money, coverage, and HIPPA laws. Doctors are required to have state licenses to practice, but during the pandemic, these were relaxed to cover needs. We all took full advantage of this. When my kids were sick during that time, I would set up a telehealth appointment and be done with it. If they needed to physically go to a doctor’s office to check for strep or flu, we simply went to the back entrance; the nurse came out, did a swab, and we were on our way. It was a simple and easy way to care for and protect patients from other patients. All of our doctors are local, so the changes coming will not affect us, but it will affect my parents.

Read about experimental therapies for CAD

There are so many people now facing this issue. For instance, there are people that moved during the pandemic for various reasons who couldn’t or didn’t know where to find the right specialist during that time. I can totally see this happening, as it was difficult to reach specialists and even more difficult to get an appointment. These relaxed rules truly helped those in need.

Then there are still others that have needs due to hard-to-treat diseases that had the blessing of being able to use the services of renowned hospitals through telehealth. Now all of that is being taken away.

Medicare is a huge problem that may require government intervention to keep servicing those that need it. There are 62 million Americans insured by Medicare, including the disabled and elderly. In the past, telehealth services were only allowed for those in rural areas. With the changes made during COVID, everyone was allowed to use telehealth, which was a blessing for those who have a hard time getting around physically or who do not have a way to get to the doctor. Telehealth services could be extended indefinitely, but that requires Congress to get involved.

There is the cost factor—not just the insurance end of it, but the cost for patients. There are many people that work paycheck to paycheck and/or do not have time off and can’t afford to leave work to go to the doctor. This leaves patients making difficult decisions that often has them skipping the doctor altogether. In some instances, they wait until they are too sick and then need a hospital. This is a nightmare for people and, I believe, unfair.

Read more about HCP resources for CAD

There are HIPPA issues, as well. At the time of COVID, doctors were permitted to use platforms like Zoom and Facetime without being penalized, but now that’s changing. The issue with some of these platforms is that they aren’t helpful for those who do not understand technology or do not use the internet. My parents had this issue, and it took quite some time to explain to them how telehealth works and how to use it. Prior to that, they were permitted to at least do the phone call portion of telehealth. This too is changing, where audio will only be allowed for mental health services.

There are many proposals on how to fix these issues, and one includes multistate licensure agreements. With these licensures, the correct oversight will be in place, which will allow doctors to continue to offer telehealth services to many across many states. If Congress can fix the Medicare side of things, then patients will still be able to enjoy the safety and convenience of telehealth from their homes. It looks like it will be a long and drawn-out battle trying to fix this mess.