Veterans with ALS need your support in getting the best care possible from the Department of Veteran’s Affairs (VA). Instead of being seen by an accredited multidiscipline care team, most veterans with ALS are receiving general care. This is due in large part to the lack of clear guidance and policy on the most effective ALS care protocols within the VA.
Study after study indicates that ALS patients fare better under a multidiscipline care team. Key findings of these studies include: Quality of life is maintained and enhanced through the aggressive management of physical and emotional symptoms; Multidiscipline care teams do not change the neurological progression of the disease, but increase the survival of ALS patients regardless of their initial onset; Multidisciplinary clinics optimize health care delivery and prolong survival; Only comprehensive multidisciplinary care can effectively improve overall quality of life from diagnosis to death; and Cost of multidiscipline care teams is essentially the same as general care.
Due to the quality of care and tangible benefits of accredited multidiscipline care, many veterans with ALS chose to attend a non-VA ALS Clinic using MEDICARE and/or private health care insurance. VA neurologists are telling veterans with ALS to attend non-VA ALS clinics since it is virtually impossible to get the VA to fund this type of accredited multi-discipline care. The VA claims they can provide the same care through multiple appointments via general care which negates the benefits of a multi-discipline care team clinic approach.
Amyotrophic Lateral Sclerosis (ALS) – better known as Lou Gehrig’s Disease -is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Veterans diagnosed with ALS are considered service connected regardless of when or where they served in the military as of September 23, 2008. Since this change, the VA has not published or developed guidance on the care of veterans with ALS. VA Hospitals have been left on their own to develop care strategies for ALS patients. Most rely on general care, but a few have established a multidiscipline care team approach utilizing their Spinal Cord Injury Unit resources. Others have established joint ALS multidiscipline care teams by partnering with accredited fee based medical facilities. At best, this approach only benefits a few veterans. Please help rectify this shortfall in care for veterans with ALS.