January 13, 2025

Compensation Service
Veterans Benefits Administration
Department of Veterans Affairs
810 Vermont Ave., NW
Washington, DC 20420 

Submitted via Regulations.gov 

RE: Comments in Response to RIN 2900-AQ73, Schedule for Rating Disabilities: Neurological Conditions and Convulsive Disorders 

Dear Dr. Reynolds: 

Following are I AM ALS comments Regarding the Proposed Diagnostic Code 8036, Primary Lateral Sclerosis. 

I AM ALS is a patient-led community that provides critical support and resources to those living with ALS, caregivers and loved ones. We empower advocates to raise mainstream awareness and lead the revolution against ALS in driving the development of cures. 

I AM ALS appreciates the VA’s efforts to refine the VA schedule for Rating Disabilities (VASRD) for neurological conditions and convulsive disorders.

However, I AM ALS is concerned about the proposal to create a separate diagnostic code for Veterans with Primary Lateral Sclerosis (PLS) versus Amyotrophic Lateral Sclerosis (ALS). 

PLS and ALS are both devastating neurological conditions, and while they differ in progression, PLS, much like ALS can significantly impact a veteran’s quality of life and ability to function. Creating a separate code risks undervaluing the severe functional limitations and progressive nature of PLS, potentially leading to disparities in disability ratings and benefits. 

Furthermore, leading ALS scientists and clinicians and leading veteran organizations have expressed significant concerns about this proposal, noting that PLS is part of the motor neuron disease spectrum and can sometimes evolve into ALS over time. Leading neurologists share that there is robust evidence that ALS and PLS are part of a continuum at the pathological and molecular level. Creating distinct diagnostic codes may overlook this complexity, complicating assessments and potentially delaying proper support and treatment for veterans. 

I AM ALS urges the VA to carefully consider the potential impact on veterans with PLS and believes that creating a separate code at this juncture will fail to provide equitable recognition of their condition’s severity and progression. 

PLS may progress or an initial diagnosis may turn out to be incorrect as increasing symptoms point to ALS. Yet VA proposes to add the new DC to “account for impairment due to” PLS. This is unnecessary, as adequate DCs already exist. In the proposed rule, VA refers to impairments as “loss of muscle control in the feet and legs, arms, hands, and the muscles that control speech, swallowing, and chewing.” However, loss of muscle control in the feet and legs already have DCs under 38 CFR § 4.71a, and speech, swallowing, chewing, etc., already have DCs under § 4.124a. Thus, the proffered rationale does not support creation of the standalone DC, as appropriate DCs already exist. Because there is no clear scientific or medical support for the change, and because VA already has tools to address concerns with PLS impairments, I AM ALS respectfully urges VA to withdraw the proposal for DC 8036. 

We appreciate your consideration and if you have any questions you may contact our Chief Government Affairs Officer, Sonya Sotak Elling at sonya@iamals.org.

Best Regards, 

Sonya Sotak Elling
Chief Government Affairs Officer