Tuesday, September 30, 2008

Veterans Affairs reclassifies ALS as service-related disability

Department to cover Lou Gehrig’s disease


No one can explain it, but the numbers are clear: Veterans are developing the movement-robbing amyotrophic lateral sclerosis disease at twice the rate as those who never served.

Based on that research, the Department of Veterans Affairs has decided to award full medical and disability benefits to vets suffering from the illness, regardless of where or when they served. The decision reclassifies ALS, also called Lou Gehrig’s disease, as a service-related disability.

The decision brings relief to Bonita Springs resident Greg Ford, an Army veteran, who was diagnosed with ALS 12 years ago when he was 37. He said he has since burned through his savings, his 401(k) plan and the proceeds from the sale of a home in St. Louis. He and a caregiver, Kathy Remmenga, live in a Bonita condominium owned by Ford’s father and stepmother.

“More often than not, this disease financially bankrupts families. It’s a godsend that this benefit is available to us now,” Ford said.

He receives some disability pay through Social Security as well as private long-term disability insurance, though he said it’s not enough to keep up with Remmenga’s salary, medical equipment, home modifications and the rising cost of living. Ford doesn’t yet know how much money he’ll receive from the VA; the agency will evaluate him and determine his compensation.

In the late stages of the disease, the cost of medical equipment, round-the-clock care and other needs can run as high as $200,000 a year.

“ALS is a disease that progresses rapidly, once it is diagnosed,” Veterans Affairs Secretary Dr. James Peake said in a statement. “There simply isn’t time to develop the evidence needed to support compensation claims before many veterans become seriously ill. My decision will make those claims much easier to process, and for them and their families to receive the compensation they have earned through their service to our nation.”

The first link between military service and ALS emerged in the wake of the 1991 Gulf War. As researchers examined Gulf War Syndrome, a collection of conditions such as muscle weakness, slurred speech and memory loss, they discovered that Gulf veterans were being diagnosed with ALS at twice the rate of the normal population - and at ages younger than the average onset of 55.

Then, a 2005 Harvard University study looked at veterans who had served prior to the Gulf War and found higher rates of ALS among them as well. An Institute of Medicine report in 2006 evaluated that and other studies, confirmed the link, and prompted last week’s VA decision.

Researchers do not yet know why ALS occurs more often in veterans, but they are exploring theories such as trauma, exposure to toxins, intense physical activity and vaccinations.

ALS attacks nerve cells in the brain and spinal column. As the neurons deteriorate, patients lose their ability to move, talk - and in the end, breathe. The average lifespan after diagnosis is two to five years. Ford’s 12-year survival is exceedingly rare.

Even among veterans, ALS is not a common disease. The ALS association estimates the disease strikes two out of 100,000 people. An estimated 5,600 people in the United States are diagnosed with the disease each year.

Ford, 50, was in the Army for eight years as a Russian linguist. His service occurred during the Cold War years after Vietnam and before the Gulf War. No one in his family has had ALS. He wonders whether the illness is related to multiple immunizations in preparation for overseas deployment, but he knows that theory is yet unproven.

Ford had inquired about VA help several years ago and said the agency had been willing to provide medical care. But he declined because his private insurance at the time offered greater benefits and he wanted to stay involved in clinical trials run by academic medical centers. Now, Ford said, the ALS status change will offer veterans a greater range of VA care.

“The decision is a good one, the right one, an honorable one,” Ford said.

The VA has been criticized recently for the level of veterans’ care, most notably in a Washington Post expose about conditions at the Defense Department’s Walter Reed Army Medical Center and questions over its treatment of veterans with post traumatic stress disorder and traumatic brain injuries.