08-18-2007, 08:06 PM
This rather horrifying article introduced me to the term Genetic Discrimination, which is fascinating in its implications. Will AS fall under the umbrella of this Nazi-like practice?
It also calls up the issue of the US Army recruiting AS people. I had a really sweet Autistic kid who graduated two years ago and was determined to join the Army. His mom was terrified, but we figured the military would not take him. Now I wonder if they got him... and if this is what they'll do to him after Iraq destroys him.
U.S. military practices genetic discrimination in denying benefits
Those medically discharged with genetic diseases are left without disability or retirement benefits. Some are fighting back.
By Karen Kaplan
August 18, 2007
Eric Miller's career as an Army Ranger wasn't ended by a battlefield wound, but his DNA.
Lurking in his genes was a mutation that made him vulnerable to uncontrolled tumor growth. After suffering back pain during a tour in Afghanistan, he underwent three surgeries to remove tumors from his brain and spine that left him with numbness throughout the left side of his body.
So began his journey into a dreaded scenario of the genetic age.
Because he was born with the mutation, the Army argued it bore no responsibility for his illness and medically discharged him in 2005 without the disability benefits or health insurance he needed to fight his disease.
"The Army didn't give me anything," said Miller, 28, a seven-year veteran who is training to join the Tennessee Highway Patrol.
While genetic discrimination is banned in most cases throughout the country, it is alive and well in the U.S. military.
For more than 20 years, the armed forces have held a policy that specifically denies disability benefits to servicemen and women with congenital or hereditary conditions. The practice would be illegal in almost any other workplace.
There is one exception, instituted in 1999, that grants benefits to personnel who have served eight years.
"You could be in the military and be a six-pack-a-day smoker, and if you come down with emphysema, 'That's OK. We've got you covered,' " said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University."But if you happen to have a disease where there is an identified genetic contribution, you are screwed."
Representatives from the Pentagon declined multiple requests to discuss the policy.
The regulation appears to have stemmed from an effort to protect the armed services from becoming a magnet for people who knew they would come down with costly genetic illnesses, according to Dr. Mark Nunes, who headed the Air Force Genetics Center's DNA diagnostic laboratory at Keesler Air Force Base in Mississippi.
The threat is almost certainly small. A 1999 military analysis estimated that about 250 service members are discharged each year for health problems involving a genetic component. Disability payments for them would amount to $1.7 million the first year and rise each year after that as more veterans join the rolls. Healthcare expenditures would have added to the tab.
"Maybe they didn't want to foot the bill for my disability," said Miller, whose rare genetic disease is called Von Hippel-Lindau syndrome. "It's saving money for them. I'm just one less soldier that they have to dish out compensation to."
But the cost for individuals medically discharged can be high. While some eventually receive benefits from Veterans Affairs or private insurers, the policy leaves Miller and others scrambling to find treatment for complex medical conditions at the same time they are reestablishing their lives as civilians without having the benefit of Tricare, the military's health insurance.
"It seems particularly draconian to say, 'Well, you're out with no benefits,' whereas another person with the same injury gets the coverage simply because we don't know there's a gene in there that's causing this," said Alex Capron, a professor who studies healthcare law, policy and ethics at USC.
The fear of genetic discrimination coincides with early efforts to decode the human genome more than 25 years ago.
It took no great insight to realize that a complete inventory of life's building blocks would not only revolutionize the practice of medicine, but also mark individuals whose genes put them at risk for myriad diseases.
[and will AS be considered a "disease" when it's convenient for any and all kinds of discrimination?]
Congress took action in 1996, banning genetic discrimination in group health plans, and in 2000, President Clinton signed an executive order forbidding the practice against the federal government's nearly 2 million civilian employees. Similar laws against genetic discrimination swept through 31 states.
Congress is working to extend the federal law with the Genetic Information Nondiscrimination Act, which would protect people with individual medical policies. The act has passed the House and awaits a vote in the Senate. [the Democratic congress, that is. And will Bush sign it?]
Even if it becomes law, it will not apply to military personnel.
The Defense Department's original policy did not consider genetics when determining whether a soldier deserved medical retirement, assuming that any disease discovered during service had been incurred in the line of duty.
There was little reason to consider genetic mutations, since few were known. But by 1986, as scientists associated more sections of DNA with particular diseases, the military declared that it was not responsible for soldiers with "congenital and hereditary" conditions.
At the urging of the National Human Genome Research Institute, the Defense Department proposed in 1999 that anyone who had served for 180 days be eligible for medical retirement, even if their health problem had a genetic component, said Barbara Fuller, assistant director for ethics at NHGRI, part of the National Institutes of Health.
But the Office of Management and Budget decided on the longer, 8-year term to conform with other military health and retirement guidelines, according to an OMB official.
Some genetic discrimination is unavoidable given the demands of military service, said Nunes, now a geneticist at Ohio State University.
"If you have achondroplasia -- if you're a dwarf -- you're not eligible for military service," he said. "If you have hereditary hearing loss, you're not eligible for military service. If you have color blindness, you're not eligible to fly an airplane. Obviously, there's genetic discrimination in the military, for good reason."
But Nunes said the armed forces' disability policy was flawed by a fundamental misunderstanding about the biology of inherited diseases.
Only in a few cases, such as Huntington's disease, does a specific mutation in a particular stretch of DNA guarantee the onset of illness.
In most cases, a faulty gene increases an individual's risk of developing a disease, but does not ensure it. Typically, an external event is necessary to trigger the onset of a medical condition.
Such was the case with an Army helicopter gunship pilot who was reassigned to desk duty after she became too pregnant to fly.
Dr. Melissa Fries, an Air Force geneticist who became involved in the case, said the pilot developed a blood clot in her leg -- a typical complication of pregnancy that is exacerbated by inactivity.
She was diagnosed with chronic thrombophlebitis, a condition that disqualified her from flying. The pilot, who declined to discuss her case, decided to retire from the Army.
As part of her medical work-up, doctors discovered she had a genetic mutation for Factor V Leiden, which is found in 5% of Caucasians and increases their risk of developing blood clots.
An Army physical evaluation board, which determines disability benefits, denied her claim because of the mutation.
Her military doctors were stunned since her thrombophlebitis was probably caused by her pregnancy and desk job. They downplayed the role of her mutation because 99% of Factor V Leiden carriers never develop blood clots.
Testing discouraged
Military doctors now discourage their patients from getting potentially life-saving genetic tests, undermining their ability to provide top-notch care.
"If someone called me up with regard to genetic testing, I had to say, 'That might not be something you want to pursue,' " Nunes said. "That's very hard to say."
In her 26 years in the Air Force, Fries said she often dissuaded women from getting tested for the BRCA1 and BRCA2 mutations that dramatically increase their risk of developing breast cancer.
She recalled counseling a 22-year-old soldier whose father had just been diagnosed with Huntington's disease. The soldier had 50-50 odds of developing the disease.
A neurologist at Walter Reed Army Medical Center ordered a genetic test for Huntington's, and it turned up positive.
"He was discharged from the military on the basis of the Huntington's disease gene even though, at that level of gene expansion, there was expected to be another 25 years before he would display any symptoms," said Fries, now director of genetics and fetal medicine at Washington Hospital Center in Washington, D.C.
For many in the military, the best course is to simply refuse all genetic tests, even though they may be needed for an accurate diagnosis, she said.
Getting genetic tests through civilian channels is not an option because it would violate the uniform code of military justice.
"You could get court-martialed if it were revealed that you had sought medical treatment or testing outside the system," Nunes said.
Most soldiers have no idea about the genetic rule, much less have a reason to challenge it. For those who choose to fight, it can be arduous process.
No one contested the policy until Marine Gunnery Sgt. Jay Platt did in 1998.
Platt had lost an eye and a testicle to Von Hippel-Lindau syndrome before doctors told him he had a malignant tumor in his left kidney and four benign tumors on his brain. He knew his 15-year Marine career was over.
"If you want to go ahead and medically retire me, I'm not going to fight it," he told his doctors.
But the Marines refused. Instead, he was medically discharged without any benefits because his genetic disease was a preexisting condition.
A discharge have would cut Platt off from Tricare, which allows members to seek care from a large network of providers, just like a civilian HMO.
"That was my biggest thing," he said. "I needed to have treatments for the rest of my life."
With the help experts from NHGRI, Platt appealed his case to an physical evaluation board. His doctors said that although the mutation predisposed him to Von Hippel-Lindau syndrome, some aspect of his service -- such as repeated exposure to the solvents used to clean weapons -- could have triggered the tumors.
Platt ultimately won his case and was granted disability payments of about $2,000 a month. He now travels the country as a motivational speaker talking about his fight against his disease.
The helicopter pilot with the Factor V Leiden mutation also appealed her case, going all the way to the Army surgeon general to win a medical retirement.
But Miller, the Army ranger, did not fare so well. Even though he had the same disease as Platt, he lost his appeal and was discharged without benefits in 2005.
He still has to monitor his slow-growing tumors and be on the lookout for new ones. But without Tricare coverage, he can't afford to see a civilian doctor close to his home in Oak Ridge, Tenn.
Instead, he travels an hour and a half to the Veterans Affairs facility in Johnson City at least twice a year. Every so often, he makes the three-hour drive to another VA facility in Lexington, Ky., to see a neurologist with expertise in his disease.
The worry never leaves him. His genes guarantee that he will never be cured.
karen.kaplan@latimes.com
It also calls up the issue of the US Army recruiting AS people. I had a really sweet Autistic kid who graduated two years ago and was determined to join the Army. His mom was terrified, but we figured the military would not take him. Now I wonder if they got him... and if this is what they'll do to him after Iraq destroys him.
U.S. military practices genetic discrimination in denying benefits
Those medically discharged with genetic diseases are left without disability or retirement benefits. Some are fighting back.
By Karen Kaplan
August 18, 2007
Eric Miller's career as an Army Ranger wasn't ended by a battlefield wound, but his DNA.
Lurking in his genes was a mutation that made him vulnerable to uncontrolled tumor growth. After suffering back pain during a tour in Afghanistan, he underwent three surgeries to remove tumors from his brain and spine that left him with numbness throughout the left side of his body.
So began his journey into a dreaded scenario of the genetic age.
Because he was born with the mutation, the Army argued it bore no responsibility for his illness and medically discharged him in 2005 without the disability benefits or health insurance he needed to fight his disease.
"The Army didn't give me anything," said Miller, 28, a seven-year veteran who is training to join the Tennessee Highway Patrol.
While genetic discrimination is banned in most cases throughout the country, it is alive and well in the U.S. military.
For more than 20 years, the armed forces have held a policy that specifically denies disability benefits to servicemen and women with congenital or hereditary conditions. The practice would be illegal in almost any other workplace.
There is one exception, instituted in 1999, that grants benefits to personnel who have served eight years.
"You could be in the military and be a six-pack-a-day smoker, and if you come down with emphysema, 'That's OK. We've got you covered,' " said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University."But if you happen to have a disease where there is an identified genetic contribution, you are screwed."
Representatives from the Pentagon declined multiple requests to discuss the policy.
The regulation appears to have stemmed from an effort to protect the armed services from becoming a magnet for people who knew they would come down with costly genetic illnesses, according to Dr. Mark Nunes, who headed the Air Force Genetics Center's DNA diagnostic laboratory at Keesler Air Force Base in Mississippi.
The threat is almost certainly small. A 1999 military analysis estimated that about 250 service members are discharged each year for health problems involving a genetic component. Disability payments for them would amount to $1.7 million the first year and rise each year after that as more veterans join the rolls. Healthcare expenditures would have added to the tab.
"Maybe they didn't want to foot the bill for my disability," said Miller, whose rare genetic disease is called Von Hippel-Lindau syndrome. "It's saving money for them. I'm just one less soldier that they have to dish out compensation to."
But the cost for individuals medically discharged can be high. While some eventually receive benefits from Veterans Affairs or private insurers, the policy leaves Miller and others scrambling to find treatment for complex medical conditions at the same time they are reestablishing their lives as civilians without having the benefit of Tricare, the military's health insurance.
"It seems particularly draconian to say, 'Well, you're out with no benefits,' whereas another person with the same injury gets the coverage simply because we don't know there's a gene in there that's causing this," said Alex Capron, a professor who studies healthcare law, policy and ethics at USC.
The fear of genetic discrimination coincides with early efforts to decode the human genome more than 25 years ago.
It took no great insight to realize that a complete inventory of life's building blocks would not only revolutionize the practice of medicine, but also mark individuals whose genes put them at risk for myriad diseases.
[and will AS be considered a "disease" when it's convenient for any and all kinds of discrimination?]
Congress took action in 1996, banning genetic discrimination in group health plans, and in 2000, President Clinton signed an executive order forbidding the practice against the federal government's nearly 2 million civilian employees. Similar laws against genetic discrimination swept through 31 states.
Congress is working to extend the federal law with the Genetic Information Nondiscrimination Act, which would protect people with individual medical policies. The act has passed the House and awaits a vote in the Senate. [the Democratic congress, that is. And will Bush sign it?]
Even if it becomes law, it will not apply to military personnel.
The Defense Department's original policy did not consider genetics when determining whether a soldier deserved medical retirement, assuming that any disease discovered during service had been incurred in the line of duty.
There was little reason to consider genetic mutations, since few were known. But by 1986, as scientists associated more sections of DNA with particular diseases, the military declared that it was not responsible for soldiers with "congenital and hereditary" conditions.
At the urging of the National Human Genome Research Institute, the Defense Department proposed in 1999 that anyone who had served for 180 days be eligible for medical retirement, even if their health problem had a genetic component, said Barbara Fuller, assistant director for ethics at NHGRI, part of the National Institutes of Health.
But the Office of Management and Budget decided on the longer, 8-year term to conform with other military health and retirement guidelines, according to an OMB official.
Some genetic discrimination is unavoidable given the demands of military service, said Nunes, now a geneticist at Ohio State University.
"If you have achondroplasia -- if you're a dwarf -- you're not eligible for military service," he said. "If you have hereditary hearing loss, you're not eligible for military service. If you have color blindness, you're not eligible to fly an airplane. Obviously, there's genetic discrimination in the military, for good reason."
But Nunes said the armed forces' disability policy was flawed by a fundamental misunderstanding about the biology of inherited diseases.
Only in a few cases, such as Huntington's disease, does a specific mutation in a particular stretch of DNA guarantee the onset of illness.
In most cases, a faulty gene increases an individual's risk of developing a disease, but does not ensure it. Typically, an external event is necessary to trigger the onset of a medical condition.
Such was the case with an Army helicopter gunship pilot who was reassigned to desk duty after she became too pregnant to fly.
Dr. Melissa Fries, an Air Force geneticist who became involved in the case, said the pilot developed a blood clot in her leg -- a typical complication of pregnancy that is exacerbated by inactivity.
She was diagnosed with chronic thrombophlebitis, a condition that disqualified her from flying. The pilot, who declined to discuss her case, decided to retire from the Army.
As part of her medical work-up, doctors discovered she had a genetic mutation for Factor V Leiden, which is found in 5% of Caucasians and increases their risk of developing blood clots.
An Army physical evaluation board, which determines disability benefits, denied her claim because of the mutation.
Her military doctors were stunned since her thrombophlebitis was probably caused by her pregnancy and desk job. They downplayed the role of her mutation because 99% of Factor V Leiden carriers never develop blood clots.
Testing discouraged
Military doctors now discourage their patients from getting potentially life-saving genetic tests, undermining their ability to provide top-notch care.
"If someone called me up with regard to genetic testing, I had to say, 'That might not be something you want to pursue,' " Nunes said. "That's very hard to say."
In her 26 years in the Air Force, Fries said she often dissuaded women from getting tested for the BRCA1 and BRCA2 mutations that dramatically increase their risk of developing breast cancer.
She recalled counseling a 22-year-old soldier whose father had just been diagnosed with Huntington's disease. The soldier had 50-50 odds of developing the disease.
A neurologist at Walter Reed Army Medical Center ordered a genetic test for Huntington's, and it turned up positive.
"He was discharged from the military on the basis of the Huntington's disease gene even though, at that level of gene expansion, there was expected to be another 25 years before he would display any symptoms," said Fries, now director of genetics and fetal medicine at Washington Hospital Center in Washington, D.C.
For many in the military, the best course is to simply refuse all genetic tests, even though they may be needed for an accurate diagnosis, she said.
Getting genetic tests through civilian channels is not an option because it would violate the uniform code of military justice.
"You could get court-martialed if it were revealed that you had sought medical treatment or testing outside the system," Nunes said.
Most soldiers have no idea about the genetic rule, much less have a reason to challenge it. For those who choose to fight, it can be arduous process.
No one contested the policy until Marine Gunnery Sgt. Jay Platt did in 1998.
Platt had lost an eye and a testicle to Von Hippel-Lindau syndrome before doctors told him he had a malignant tumor in his left kidney and four benign tumors on his brain. He knew his 15-year Marine career was over.
"If you want to go ahead and medically retire me, I'm not going to fight it," he told his doctors.
But the Marines refused. Instead, he was medically discharged without any benefits because his genetic disease was a preexisting condition.
A discharge have would cut Platt off from Tricare, which allows members to seek care from a large network of providers, just like a civilian HMO.
"That was my biggest thing," he said. "I needed to have treatments for the rest of my life."
With the help experts from NHGRI, Platt appealed his case to an physical evaluation board. His doctors said that although the mutation predisposed him to Von Hippel-Lindau syndrome, some aspect of his service -- such as repeated exposure to the solvents used to clean weapons -- could have triggered the tumors.
Platt ultimately won his case and was granted disability payments of about $2,000 a month. He now travels the country as a motivational speaker talking about his fight against his disease.
The helicopter pilot with the Factor V Leiden mutation also appealed her case, going all the way to the Army surgeon general to win a medical retirement.
But Miller, the Army ranger, did not fare so well. Even though he had the same disease as Platt, he lost his appeal and was discharged without benefits in 2005.
He still has to monitor his slow-growing tumors and be on the lookout for new ones. But without Tricare coverage, he can't afford to see a civilian doctor close to his home in Oak Ridge, Tenn.
Instead, he travels an hour and a half to the Veterans Affairs facility in Johnson City at least twice a year. Every so often, he makes the three-hour drive to another VA facility in Lexington, Ky., to see a neurologist with expertise in his disease.
The worry never leaves him. His genes guarantee that he will never be cured.
karen.kaplan@latimes.com