Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.

The ALS Association worked closely with the American Speech-Language-Hearing Association (ASHA) to ensure that five services critical to people living with ALS were added to the telehealth coverage list: treatment of swallowing dysfunction and oral function for feeding, a one-hour evaluation for speech generating devices, 30 minutes of additional evaluation for a speech generating device, therapeutic services with speech generating devices including programming and modification, and evaluation of oral and pharyngeal swallowing function.

The Association relied on the expertise of Amy Roman, a speech language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco in advocating for these changes. Amy treats approximately 140 people living with ALS each year.  

“These changes will allow speech therapists at ALS clinics and throughout the country to continue treating patients in the safety of their homes and cover services that can be done effectively using telehealth,” said Kathleen Sheehan, Vice President of Public Policy for The ALS Association.  

Telehealth coverage was made retroactive to January 1 and will be in effect through the end of the federally declared public health emergency, which is expected to last minimally through the end of 2021.

While the codes are currently set to expire at the end of the current public health emergency, The ALS Association will continue to fight for permanent expansion of telehealth services beyond the pandemic.

Fighting for Continued Expanded Access to Telehealth

Expanded access to telehealth is a key public policy priority for the  Association this year, and recent developments on Capitol Hill show momentum in the fight.

In March, we endorsed the Telehealth Modernization Act, which would make telehealth permanent for Medicare beneficiaries, and we submitted written testimony to the House Energy and Commerce Committee to make clear why telehealth is important to all people living with ALS, now and after the pandemic – both for medical care and increasing opportunities to participate in clinical trials.

While everyone has generally benefitted from the temporary expansion of telehealth during the pandemic, people living with ALS have experienced expanded access to ALS multidisciplinary care across state lines in a way that was not possible before COVID. Data has shown that this type of care increases quality of life and survival for people living with the disease.

Regardless of COVID, travel to clinics for someone living with ALS and their family can be burdensome given the loss of mobility that is experienced as symptoms progress and wheelchairs and ventilators are required. While telehealth is not a replacement for hands on care from an ALS physician, telehealth does extend the ability of the clinician to make timely adjustments to the treatment plan as changes occur in loss of function, particularly the ability to breathe and eat.

Given that people with ALS, following diagnosis, have an average life expectancy of less than 5 years, participation in clinical trials is of utmost importance. While the pandemic has slowed research and conditions vary across the county, clinical trials are underway using appropriate safety precautions. Telehealth has made it possible for researchers to effectively follow clinical trial participants in terms of trial protocol and any care that is needed.  

Telehealth can provide a safe and effective way for people living with ALS to receive care from medical providers and specialists. Remote clinical trials also provide patients the chance for access to potentially effective treatments. But Congress must act to ensure access to both continues beyond COVID.

To read the full article about expanded telehealth coverage for speech therapy codes as presented by American Speech-Language-Hearing Association (ASHA), visit ASHA.org HERE.

To learn more about how you can use your voice and join the fight against ALS, visit ALS.org HERE.