Provide Veterans with ALS care through a multidiscipline ALS clinics
  • Petitioned Department of Veterans Affairs

This petition was delivered to:

U.S. Department of Veterans Affairs - 810 Vermont Avenue, NW - Washington, DC 20420
Department of Veterans Affairs
U.S. House of Representatives
Georgia-10
Rep. Paul Broun
Texas-11
Rep. Mike Conaway
Florida-01
Rep. Jeff Miller
Ohio-06
Rep. Bill Johnson
California-51
Rep. Juan Vargas

Provide Veterans with ALS care through a multidiscipline ALS clinics

    1. SCOTT JOHNSON
    2. Petition by

      SCOTT JOHNSON

      EVANS, GA

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.

Recent signatures

    News

    1. ALSA Supports Veterans with ALS

      SCOTT JOHNSON
      Petition Organizer

      The ALS association has confirmed they will work to get the VA to provide consistent ALS care throughout the VHA system with multi-discipline clinics as the goal.

    2. Humbled by your support...

      SCOTT JOHNSON
      Petition Organizer

      Wow. Let's keep it up. Share, share, share....

    3. Reached 250 signatures
    4. OUTREACH TO VETERAN ORGANIZATIONS

      SCOTT JOHNSON
      Petition Organizer

      POSTED THE PETITION LINK TO THE ALSA, PVA, WWP, DAV, AND IAVA FACEBOOK PAGES.

    5. Reached 50 signatures
    6. My ALS Story

      SCOTT JOHNSON
      Petition Organizer

      After returning from a 15 month deployment to Iraq in April 2008, I began to develop symptoms associated with ALS/Lou Gehrig's disease. On 13 July 2009, I was diagnosed with ALS. At the time, I was active duty and assigned to Fort Leonard Wood, Missouri. By August, I lost approximately 70 percent of my overall body strength and virtually all the dexterity in my left hand. I was promoted to Colonel on 01 July 2010, and medically retired with 22.5 years in the Army at Fort Gordon on 13 July 2010. Today, I live in Evans, Georgia with my wife, Ann, and our two boys, Connor (12) and David (4). Thanks to the VA I've got the equipment needed to remain mobile - power chairs and a specially equipped van. That said, I rely on assistance to eat, dress, toilet, and take care of my service dog, Joy. While still in the Army, I attended ALS clinics funded by the Army/TRICARE. I've chosen to continue to attend an ALS clinic with MEDICARE since the VA wouldn't fund it, and the care is so much better.

    7. Care for Veterans with ALS hasn't changed within the VA in 15 years

      SCOTT JOHNSON
      Petition Organizer

      As a rule, Veteran's with ALS recieve general care. The care is appointment driven where the veteran attends up to nine appointments prior to a neurological appointment. Depending on need, the process starts again on a monthly, quarterly, or longer. As ALS progresses the screenings occur on a more frequent basis. Although there have been lots of studies that show ALS Patients fair better in a multidiscipline clinic, it's easy to see that attending appointments via general care could quicly overwhelm a vet and caregiver, and reduces the quality of a veterans life. Compared with multidiscipline ALS Clinic where all specialist see a patient over a 3hr window, quality of life is much better n an ALS clinic. Studies also indicate there is an increase in length of life when treated in a multidisciplne ALS clinic.

    8. Reached 25 signatures
    9. VA snail mail address updated

      SCOTT JOHNSON
      Petition Organizer

      Mail a copy of the petition letter to the VA!

    Supporters

    Reasons for signing

    • Jennifer Walden STOCKTON, CA
      • over 2 years ago

      My husband has ALS and our VA care has been less than stellar. We've waited 8 months for our rating and have difficulty getting assistance.

      REPORT THIS COMMENT:
    • Kathleen Waszczak NIANTIC, CT
      • over 2 years ago

      Because it is the right thing to do.

      REPORT THIS COMMENT:
    • Debra Pfeffer STATESBORO, GA
      • over 2 years ago

      I have ALS and travel two hours to attend an ALS Clinic because of their expertise in dealing with this disease. Many in the medical community are unprepared to adequately manage it's complexities. The multidisciplinary approach means that I have one appointment instead of 6 or more allowing my caregiver to miss fewer work days. Fatigue and mobility become serious issues as the disease progresses, having one appointment alleviates a great deal of stress for myself and my family.

      Coming from a military family I have seen first hand the sacrifices our veterans make in order to serve our country. Please help bring about a change that will greatly improve the level of care and quality of life that all of our veterans deserve.

      REPORT THIS COMMENT:
    • Janet Fandel PITTSTOWN, NJ
      • over 2 years ago

      ALS has affected a veteran friend of mine.

      REPORT THIS COMMENT:
    • Christopher Ward MT. DORA, FL
      • over 2 years ago

      My brother is a Marine with ALS. I am a U.S. Navy Veteran.

      REPORT THIS COMMENT:

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