Wednesday, August 26, 2009

Veterans Mistakenly Informed they have ALS

ALS has been in the national news lately due to a regrettable oversight by the Veterans Administration last week.

At least 1,200 Gulf War veterans across the country were mistakenly notified by the Veterans Administration that they suffer from ALS, the Associated Press reported (the New York Times also covered the story).

The letters, dated Aug. 12, were intended to notify veterans who have ALS of the disability compensation benefits available to them. The VA blames a coding error for the mistake.

At least 2,500 letters were sent out. Of those, some 1,200 were erroneous, according to the National Gulf War Resource Center. No one knows exactly how many letters were mailed to veterans treated at VA hospitals, and how many were a mistake.

Denise Nichols, vice-president of the National Gulf War Resource Center, said her group has received calls and e-mails from alarmed veterans in Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming.

Gale Reid of Montgomery, AL, Former Air Force Reservist, put herself through a battery of painful, expensive tests following receipt of her letter. Five days later, the VA admitted it’s ‘diagnosis’ was a mistake. She says she is angry: “I've been through a week of hell, emotionally, physically and financially.”

Former Sgt. Samuel Hargrove said that he cried Sunday after opening his letter. “I can't even describe the intensity of my feelings...With so many health issues that I already have, I didn't know how to approach my family with the news.” Hargrove is a father of two.

So, at first, he said nothing. Hargrove later discovered the mistake after talking with fellow veterans in the resource center and online. He is, to put it bluntly, angry as hell.

“Our fear was this could push somebody over the edge,” said Nichols, who was worried that the news could lead already fragile veterans to commit suicide. “We don’t want that to happen.”

“VA is immediately reviewing the individual claims files for all the recipients of this letter to identify those who received the notification in error," the VA said in a statement Monday night.

The Gulf War veterans group is urging the VA to reimburse any veteran who scheduled additional tests with civilian doctors. Reid reported that her follow-up tests cost approximately $3,000, though it may take weeks before she finds out how much her private insurance will cover.

The VA has already withstood heavy criticism this year. In June, Congress questioned it over flawed colonoscopies at VA medical centers in Florida, Georgia and Tennessee that may have exposed 10,000 veterans to HIV and other infections: read about it here and here. Last month, the VA Medical Center in Philadelphia disclosed that the number of cancer patients receiving incorrect radiation doses had risen to 98 veterans over a six-year period (see the story).

Prize4Life is disturbed by this egregious error, and believes, along with Reid, that this type of letter is a callous way to transmit information which could be misinterpreted as a diagnosis. While news reports state that the letter was to inform patients of ALS-related VA benefits, it was clearly interpreted as a diagnosis by some recipients. The VA website states that:

“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.”

This mistake is particularly disturbing in light of the fact that the VA has not been traditionally responsive to ALS patients in need of rapid and intensive medical care; Veterans Today and the Charlotte Observer have run stories on veteran PALS who have faced tremendous obstacles in obtaining full VA benefits for their conditions.

The question of VA care generally is of larger significance and not the immediate concern of this post; however, increased risk of ALS has been statistically linked to veterans, and therefore deserves explicit and careful attention from the Veterans Association and all doctors who treat veterans. This error did not demonstrate any such sensitivity.

While Prize4Life finds this administrative oversight galling—especially given the severity of ALS and the lack of treatments and cures available—we hope that the nation can use this opportunity to raise awareness of the crippling effects of the disease. If you know any veterans who received the letter, please help spread the word that though for them this news was a mistake, for 30,000 other US citizens ALS is their reality. They too are fighting for their lives.

by Meghan Kallman

1 comment:

  1. It is now November 30, 2009 and I still wonder if I have ALS, my illness (at this stage) does not compare to the many who have a confirmed diagnosis of ALS; however, the daily struggles, daily physical and mental pain has me it ALS?

    Yes, the Veterans Administration apologized, yet I still wonder...

    Samuel Hargrove