VA wrongly tells vets they have a fatal disease

The VA mistakenly notified as many as 1,200 veterans that they have the fatal Lou Gehrig's disease, according to a veterans service group.

The Veterans Affairs Department sent electronically generated letters last week that wrongly told as many as 1,200 veterans they have been diagnosed with the fatal Lou Gehrig’s neurological disease, according to Jim Bunker, president of the National Gulf War Resource Center, a veterans services nonprofit group.

The VA did not comment on the cause of the mistake. Bunker said it happened due to years of misapplication of computer medical coding. Bunker said that for many years, the VA applied a medical code to refer to undiagnosed neurological disorders. Several years ago, he said, VA expanded the code category to include amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease.

Recently, the VA determined ALS to be a service-connected disability and generated automatic letters to all veterans whose records included the code for the disease. However, since the coding contained both ALS and undiagnosed neurological disorders, some of those letters were erroneous, Bunker said.

The VA did not explain the cause in a statement issued Aug. 23 and did not respond to requests for further comment.

Bunker said today his office is receiving more than 50 telephone calls a day from panicked veterans who received the automatically generated letters from the VA. The callers “were more than alarmed," Bunker said. "They were devastated to see that they had a disease and angered that the VA was callous enough to notify them in this fashion."

According to the center, the disease notification letters were sent to 2,500 veterans, and approximately 1,200 of those were in error. However, although the VA has apologized for sending “a small number” of the notification letters in error, it is still investigating the incident and has not determined how many people were affected.

In its statement, VA said it notified 1,864 service members last week of their diagnosis of ALS and their eligibility for disability benefits.

“VA has since been contacted by a small number of these veterans who do not have ALS but were mistakenly sent the ALS outreach letter,” the VA said. “VA is immediately reviewing the individual claims files for all the recipients of this letter to identify those who received the notification in error.”

VA employees are contacting individuals sent the letters in error, the agency said.

“VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter and express VA’s sincere apologies for the distress caused by this unfortunate and regrettable error,” the VA said.

Many of these veterans who received the ALS notification letters have gone to private clinicians to get a second opinion. “This second opinion outside of the VA is very expensive and can range from $1,000 to $3,000 or more,” according to Bunker's organization. He wants the VA set up a hotline and make public service announcements to publicize the error. His organization is also asking VA to pay expenses for veterans' testing and their travel to and from their primary care clinicians.

The VA has been expanding its use of computerized medical data for several years. Recently, the Government Accountability Office reported that the VA and Defense Department were not fully ready to share electronic health records.