Telehealth Could Deliver Better Care to ALS Patients

When I was 18 years old, my father was diagnosed with Amyotrophic Lateral Sclerosis (ALS) otherwise known as Lou Gehrig’s disease. I spent five months traveling with my dad to different hospitals until home health care became available and improved his access to care. However, there were many times that care was inadequate.

Telehealth is one service that could improve ALS patients’ quality of life. Yet, surprisingly, many states still limit the access to telehealth.

ALS is a progressive nervous system disease that attacks the nerve cells in the brain and spinal cord which leads to the loss of muscle control. People with ALS experience gradual loss of muscle functionality and eventually lose the ability to move, speak, eat and breathe.

My father had been showing symptoms since the end of February. However it wasn’t until late June that he received his diagnosis. When he was finally diagnosed, the disease had already progressed, and it was hard for him to get around. This made it difficult for us to do anything at home, let alone outside of the house.

It made it especially hard to travel to doctor’s appointments. Getting my father in the car to go to a routine checkup was an hour long process in itself, and that’s not to mention the almost hour long drive we had ahead of us.

Multidisciplinary ALS Clinics (MDCS) are how ALS is traditionally treated. MDCs bring together a team of specialists that cater to the needs of a patient with ALS, and this is where people with ALS receive the best care. At an MDC a person with ALS typically has access to a suite of physicians: neurologists, physical therapists, occupational therapists, respiratory therapists, nurses, dietitians, speech language pathologists, social workers and mental health professionals. This allows people with ALS to be treated for every aspect of ALS in one single location.

However, there are only approximately 60 MDCs across the country and there are seven states (Alaska, Arkansas, Delaware, Idaho, Mississippi, Oklahoma, and Wyoming) that don’t have a clinic at all. This limits the access to adequate care for a number of people.

A study found that not only are the number of MDCs limited, but as the disease worsens it is difficult for people with ALS and their caregivers to get to MDCs for appointments. Due to this, many may stop scheduling or attending appointments at a point in their disease when they need specialized care the most. Yet, the study found that having a goal of opening more MDCs isn’t the solution to their problems.

Telehealth could have changed both of our lives – and the lives of many other families affected by ALS. Telehealth services could provide ALS patients with immediate care and specialist advice without the cost and hassle of having to travel to an MDC.

The biggest challenges in increasing ALS patient access to telehealth services are getting medical insurance to pay for video televisits and cross state licensure. For example, it is viewed as illegal to provide video care to a patient across state lines unless the provider is licensed in that state.

When tackling medical insurance, it is important to look at whether states require Medicaid coverage or reimbursement for telehealth services. For example, in Massachusetts, they do not require medical coverage for live video visits. Only half of states do provide Medicaid coverage or reimbursements for all live video visits.

However, out of the seven states that do not have an MDC, Idaho is the only state with limited Medicaid coverage for live video visits. Only two states provide full Medicaid coverage for telehealth- Alaska and Oklahoma. Both of which do not have an MDC. Medicaid coverage makes it easier for those without the means to access an MDC to receive that care through telehealth.

Cross state licensing barriers prevent doctors from treating patients in a different state. Right now, 30 states allow cross state licensing which could tackle this challenge and give a person with ALS who lives in a state without an MDC access via televisits to the same care as someone with ALS who lives near an MDC.

Out of the seven states without an MDC, only three allow cross state licensing. Alaska, Arkansas, Delaware, Idaho, and Oklahoma do not allow for cross state licensing. If these states respected medical licenses from other states, it would make care for people with ALS in those states much more accessible.

Overall, telehealth services are beginning to be widely accessible to treat people with ALS. This takes the burden off them and their caregivers, but there is still a long way to go on the state’s part. Nevertheless, ALS is not the only disease that is treatable by telehealth. Telehealth is the future of medicine, and states need to be sure not to be left behind.