We just recently learned that my husband is at risk for huntington's disease. He wasn't raised by his birth parents and we've tracked down some of his birth relatives and the information we've gotten sounds like HD was in his family. He is currently in the Navy and he is deployed right now. Before he left, his doctors were wanting to test him but decided to hold off since they did a physical and he was found fit for duty. They actually mentioned HD to him and we started digging into his past. He has served a total of 6 years and it is my understanding he won't qualify for disability benefits if he tests since he hasn't served 8 years. Also, even if he serves 8 years, I'm still not certain if he'll be able to get benefits since I don't think they consider HD a coverable illness since it is genetic. I am positive he has it although my husband is in denial. It explains a lot of stuff that I couldn't quite figure out was wrong with him. I just don't know what we should do now. I work but don't make enough to support our family and we have two small children (6 & 2yrs). Can anyone please advise as to what we should do? I am at a total loss and scared to death. We are a young couple (early thirties). So far my husband has chorea and very violent mood swings. His anger is usually directed at me and he has been violent. He attacked me when I was 5 months pregnant. I am scared of him although I don't think he knows it. He'll be coming home soon and I need some advice. I'm going to see if we can get some long term disability insurance but can anyone give me any advice on how we should proceed with the military. I'm afraid we will lose our health insurance and he will lose his job if he tests. Please advise anyone that can help.

Dee

I would love to be able to offer some advise, however, I am from Canada so it won't help much. My understanding has always been that if it wasn't a pre-existing condition (meaning he knew about it before hand) than it was covered.
Good luck and all my best.

I don't know about the military part but I do know that you have to keep yourself and the children safe from his violence.

One of my brothers had hd and the Navy took very good care of him and he even stayed in the vetern's hospital instead of a nursing home before he passed away this year. I encourage you to find out more information, I don't think they're going to go after his benefits because of something "preexisting" since we all have a huntington gene and his WAS normal when he enlisted it just possible it isn't now. It's not like he lied. He had no knowledge. I know my brother had benefits and did not serve eight years. I would look into things further...

Also very serious stress mimics alot of symptoms of early hd... you may be right but I would make sure that he tests before you make up your mind he has hd. Have you ever seen someone with chorea? I have a hard time imagining that anyone would find someone with chorea fit for service? Just my thought...

scottmi,

you should be writing your senator, any senator, no you should be calling every senator, on all sides... find some on the republican side and some on the democratic side, get ahold of their offices and tell them your story...

if you dont get any action, than you better go to your local paper and ask for help...
dont tell your husband, so you wont be putting him under and pressure, and he wont be breaking any rule.

you have local representitives you can also contact...
in todays inviornment, it would be hell to pay, to hear of a soldier who has served his time, and is having his benefits stopped...
no way honey, no way, and dont let anybody tell you its alright!

also you might want to contact the veterans organizations in your area,
they will be full of advice, and may have representitives they have working for them... some of these veterans groups are pretty powerful politically.

also, if you think he has chorea, get with a doctor, and make sure you know what the symptoms are...
it would be unthinkeable that he should have to be going thru war, if he is also living thru physical hell...
if you really believe he is going thru early stages, he needs to be given a blood test, again, talk to someone even at the veterans hospital if you like to get some advice...

you need to work it...
thats what i suggest. if you have a local hd group, maybe you could also contact them...

your man deserves the best help, and best chance, as do you...

The Los Angeles Times newspaper August 18, 2007 did an article on the military and genetic discrimination. It unfortunately was not a positive article. here is the abstract the article can be purchased from the LA times web site U.S. military practices genetic discrimination in denying benefits
[HOME EDITION]

Los Angeles Times - Los Angeles, Calif.
Author: Karen Kaplan
Date: Aug 18, 2007
Start Page: A.1
Section: Main News; Part A; National Desk
Text Word Count: 1848

Abstract (Document Summary)


"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."

"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.

"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."
Reproduced with permission of the copyright owner. Further reproduction or distribution is prohibited without permission.
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Edited 1 time(s). Last edit at 12/19/2007 11:41PM by Debra.

My husband was an officer in the National Guard, he never disclosed his risk factor for HD. Had he I would like to think that they would put him on desk duty rather than being out in the field. He would not have liked it but it would have kept him safe.

As far as benefits you are in a great position check out USAA for disability and life policies, they have been our saving grace. I think though that he might need to be an officer to qualify for them.

If your husband is symptomatic and the Dr is suggesting it is HD you are going to want to look into insurances before anything else happens with his medical history to suggest HD.

Dee - Where do you live? On a base or near one? Which one? I'm retired Marine Corps and may be able to help.

Will

My brother was tested in Oct of this year and it was positive Dr told me not to be tested before I have long term health insurance and life insurance told me that once you are tested and the test come back positive no insurance company is going to touch you.On the other hand you get insurance and are tested and it comes back negative you can always cancel the policy.
As far as the military I have son in the Air Force and he said it wouldn't surprise him if they denied him benefits if he is positive.
I think I would wait until he's out of the military or I'd get outside insurance first.How much longer does he have in the Navy?
I would also put my children first.


Sue

Dee,

You may have missed my post above. If you're near a base, there are several things you can do.

1. Contact the Naval Hospital to see if they have an ombudsman or patient advocate. Explain the entire HD situation to find out what will happen to his benfits if he tests and it's positive. You need to know whether it's good or bad news. Also, find out if Tricare would cover HD treatment outside. You need to get him some treatment and the Naval medical system is not the place.

2. Contact Legal Services (JAG). Explain the whole situation to a lawyer, especially the physical abuse. Get a legal opinion on what would happen to his career and benefits if he's positive and symptomatic. If your husband lifts so mush as a finger towards you after he returns, tell him that spousal abuse is a court martial offense that could cost him his career.

3. Contact the Navy Relief Society. They have counselors who understand how the military works.

4. MRO mentioned USAA for insurance. It's the best insurance company in the world. I've had everything with them since I first joined in 1968. It used to be for only commissioned and warrant officers, but now it's for all ranks. You can join separately as the spouse of an active duty service member. Do it immediately. Once you join on active duty you have access to their services forever. You can join on-line at www.usaa.com

Will

Below are some facts on genetic discrimination by the United States Armed Forces. I'm an Army Brat and, in most cases, have always been proud of it. However how our Armed Forces are allowed to have policies that differ from Federal employees or any U.S. Citizens other then in the interest of 'national security' totally escapes me!

According to the information I found this morning, the US Armed forces takes a DNA sample from every incoming recruit. Failure to allow them to take your DNA could subject you to a court-martial.

I'd suggested anyone considering enlisting read the below two articles "Genes in Uniform: Don't Test, Don't Tell" and
"Genetic Discrimination in the Military". Based on what I learned, I think I'd tell any young person at-risk to avoid enlisting in our armes services, period!

Love
Jean

Genetic Discrimination and the Department of Defense Armed Forces

GENETIC INFORMATION NONDISCRIMINATION ACT

H.R. 493 of 2007 - Still waiting for Senate vote then Presidential approval. Also known as ?GINA,?, this Act is to protect to prohibit discrimination on the basis of genetic information with respect to health insurance and employment. Even if it becomes law, it will NOT apply to military personnel.

DEPARTMENT OF DEFENSE GENETIC DISCRIMINATION POLICY

Department of Defense (DoD) policy contains a significant exclusion for genetic diseases, stating, ?Any injury or disease discovered after a Service member enters active duty ? with the exception of congenital and hereditary conditions ? is presumed to have been incurred in the line of duty? (DoD Instruction 1332.38, section E.3.P.4.5.2.2.2). Genetic predispositions are often completely asymptomatic and usually unknown to the person who has them, although they do increase the likelihood of a disease state. In circumstances in which an active duty service member develops a disease and has been found to have a genetic predisposition to this disease, the armed forces have considered genetic predisposition to disease to be equivalent to genetic disease existing prior to service. This has caused service members who have been discharged from the military because of a medical condition to be denied benefits by medical and disability evaluation boards.

EXCEPTION - 8 YEAR RULE

Upon entering active duty, service members are presumed to be in sound physical and mental condition, except for any medical defects and physical disabilities noted at the time of entrance. After active duty commences, any injury or disease discovered ?is presumed to have been incurred in the line of duty,? unless it results from the enlistee's misconduct or negligence. When injury or disease renders service members unfit for duty, they receive a medical discharge and disability benefits, regardless of their length of service. An exception to the policy may be possible if the genetic disorder was aggravated by military service.

Another exception, instituted in 1999, grants benefits to personnel who have served eight years. This was done by the Office of Management and Budget who decided on the longer, 8-year term to grant benefits to personnel to conform with other military health and retirement guidelines, according to an OMB official. The DoD established a policy that supports disability benefits, even in cases of diseases which have a genetic predisposition,IF a service member has completed at least eight years of active duty. Whether eight years ? two complete tours of duty ? is an appropriate baseline to qualify for health care and disability benefits is questionable.

DISCHARGED WITHOUT BENEFITS

Those medically discharged with genetic diseases from the U.S. Armed Forces are left without disability or retirement benefits.

DOCTOR'S ADVISE MILIARY PATIENTS NOT TO TEST

August 30, 2007 [www.eyeondna.com] - To keep their military patients from being denied health benefits, doctors are now advising their patients to avoid genetic testing of all forms, including private testing. Dr. Mark Nunes, who headed the Air Force Genetics Center?s DNA diagnostic laboratory at Keesler Air Force Base in Mississippi: If someone called me up with regard to genetic testing, I had to say, ?That might not be something you want to pursue.? You could get court-martialed if it were revealed that you had sought medical treatment or testing outside the system.

US DEPT. OF DEFENSE AUTOMATICALLY TESTS FOR DNA

On Dec. 16, 1991, the deputy secretary of the U.S. Department of Defense quietly issued an obscure memo that opened the largest DNA bank in the world. The directive required that every member of the U.S. armed forces and all new recruits provide the Armed Forces Institute of Pathology with a DNA sample, which would be maintained on file for 75 years. The goal of this ongoing program is to obtain specimens for all active and reserve personnel by 2001 for a very simple reason: to make it easier to identify battlefield dead. [2 men challedged the DNA testing] In September 1995, a federal court ruled in favor of the government in Mayfield vs. Dalton (901 F. Supp.300), holding that its interest in accounting for the fate of soldiers and assuring peace of mind to next of kin overrode the constitutional interest of individual service personnel in being free from searches and seizures. The military's policy of requiring DNA testing of its members has not changed.

RISK OF COURT MARTIAL FOR TESTING OUTSIDE OF THE MILITARY

The direction to a soldier, sailor, airman,or marine to contribute a DNA sample is a lawful order which, if disobeyed, subjects the service member to prosecution under the Uniform Code of Military Justice (UCMJ). If convicted at court-martial for the offense of violating a lawful general order, the service member carries the lifelong stigma of a federal felony conviction, and faces a maximum punishment of a dishonorable discharge, confinement for two years, total forfeiture of all pay and allowances, and reduction to the lowest enlisted grade.

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.

REFERENCED SOURCES;


H.R. 493: Genetic Information Nondiscrimination Act [GINA] of 2007
To prohibit discrimination on the basis of genetic information with respect to health insurance and employment.
[www.govtrack.us]
Introduced - Jan 16, 2007
Scheduled for Debate - Feb 14, 2007
Passed House [details] - Apr 25, 2007
Voted on in Senate - TBD
Signed by President - TBD
Note: This bill is identical to S. 358 Genetic Information Nondiscrimination Act of 2007

Genetics & Public Policy Center
[www.dnapolicy.org]

Genetic Discrimination in the Military
May 2007 - Genetics & Public Policy
[www.dnapolicy.org]

Genes in Uniform: Don't Test, Don't Tell
January 10, 2006 Genetics Perspectives on Policy Seminar
[www.dnapolicy.org]

US Military Practices Genetic Discrimination in Denying Benefits
Full article: [www.truthout.org]
By Karen Kaplan The Los Angeles Times Saturday 18 August 2007

United States Military Right to Collect DNA

Full artice mentioned above: NY Times: April 13, 1996 [query.nytimes.com]
The United States military maintains the world's largest repository of DNA samples in Gaithersburg, Md. Its principal purpose, Pentagon officials say, is to help identify service members in difficult cases when their bodies are mutilated. But the Pentagon has also listed other circumstances in which the genetic indicators might be used, including some criminal investigations. The Pentagon established the policy in 1991 and began collecting tissue samples in June 1992. Pentagon officials said the Armed Forces Institute of Pathology in Gaithersburg had more than a million samples and the goal was to have a complete record of the genes of active service members by 1999. There are about 1.5 million people in uniform. In addition to body identification, Pentagon regulations allow samples to be used by a donor or surviving next-of-kin; by judicial order, or for investigation of a crime punishable by a year or more in confinement

The Army Lawyer - [www.loc.gov]
Headquarters, Department of Army -Department of the Army Pamphlet 27-50-363 July/August 2003
The Department of Defense (DOD) began to use DNA samples to identify the remains of service members during the first Gulf War in 1991.?Because of problems with obtaining reliable DNA samples during the Gulf War, the DOD began a program to collect and store reference specimens of DNA from members of the active duty and reserve forces.? What was then called the ?DOD DNA Registry,? a program within the Armed Forces Institute of pathology, was established pursuant to a December 16, 1991 memorandum of the Deputy Secretary of Defense. Under this program, DNA specimens are collected from active duty and reserve military personnel upon their enlistment, reenlistment, or preparation for operational deployment.

As of December 2002, the Repository, now known as the ?Armed Forces Repository of Specimen Samples for the Identification of Remains,?contained the DNA of approximately 3.2 million service members. According to a recent DOD directive, the ?provision of specimen samples by military members shall be mandatory.? The direction to a soldier, sailor, airman,or marine to contribute a DNA sample is a lawful order which, if disobeyed, subjects the service member to prosecution under the Uniform Code of Military Justice (UCMJ). If convicted at court-martial for the offense of violating a lawful general order, the service member carries the lifelong stigma of a federal felony conviction, and faces a maximum punishment of a dishonorable discharge, confinement for two years, total forfeiture of all pay and allowances, and reduction to the lowest enlisted grade.

Does the 2002 change pass constitutional muster?
Document Conclusion - The DOD Repository continues to have a special need apart from general, ordinary, or normal law enforcement as its primary and immediate purpose?the identification of remains of fallen service members. As long as that is the case, the mandatory collection of samples for the Repository does not violate the Fourth Amendment. This is true despite the fact that the Repository is accessible for investigative or prosecutorial purposes (and has been accessible for those purposes since shortly after its inception) and, as such, has an ultimate purpose that is not separate from general, ordinary, or normal law enforcement. If the Repository is accessed for law enforcement purposes so often that the purpose actually served by the Repository becomes primarily and immediately law enforcement rather than remains identification, it will lose its constitutional legitimacy regardless of the beneficent purpose for which it was founded. The special need justifying the DOD Repository?s establishment in the first place will evaporate, leaving only an unconstitutional search and seizure in its place.

Phew! Thanks, Jean. That about sums it up. Luckily I was retired before I even knew there was HD in my family.

Dee - It sounds like the only option is to hang in for the 8 year rule.

Will

My son volunteereed for the Canadian Military through the local reserves. Without his disabilities he might have gone to police school but they turned him down right away. The police in Canada must have no need for glasses, but they accept lazik vision improvement.He then applied to the Coast guard school who said hearing aids would not work due to moisture and turned him down. He made it through the military intake program which required a bit of physical work, to the point that he has a military number for life. There are no hearing aid batteries during the basic training and they said his life would be dangerous because he cannot hear.The military is aware of the damage which they do to each soldier' hearing, and they simply take an audigram and track that damage onto the hearing at intake.
His rejection letter made me laugh as they said if he were to have surgery which would repair his hearing he could apply for the military again. If there hadbeen such surgery he would have had it.
We did not mention HD as I did not have a diagnosis at that point.
I did not spend 17,000 hours teaching him to talk to become cannon fodder and I was delighted that he was turned down. But it was very hard for him.
I gave him my dad's war pictures from ww 1 and 2.
Dusty

I have both tested positive for HD, but still an active member of the Canadian Military. At the same time I have worked along side the US Navy and I am quite aware still of their Policies/Regulations. He should get the testing just to cover his own butt Your US Navy has a no tolerance policy, and there is also another test which I am still waiting to get done myself that will show both his Chain of Command and with yourselves whether or not he should/if still be fit for the Navy.
As long as the tests show he is not developing symptoms yet then he should be fit for deployment. His Command should leave him alone at this point, but if not he should go talk to either a legal rep or a JAG rep to see what his rights are. It is a very sensative area/topic, but if the tests show he can no longer be deployed, .... this all something you have to discuss together when he gets back at home with each other. I watched many sailor's the Command I was at get kicked out. They were all extremely smart and awesome at their Jobs, but didn't pass their PT test so they were punted that quickly. If he can still do all this then he will have just for his own benefits, if not then they will start thinking to themselves that he was covering it up all along
My test results were really low (39 was my genetic count/results. I should not start developing symptoms until later in life, or they will be significantly reduced), and I am on the verge of Retiring from the Military anyway so my Command is pretty much leaving me alone now at this point.

- Jim Munn (jr.)



Edited 1 time(s). Last edit at 12/27/2007 01:07PM by jimmunn.

From one of Jean's references above:

"You could get court-martialed if it were revealed that you had sought medical treatment or testing outside the system,"

That would not include supplements or exercise to treat HD.

Will

I understand the mood swings. I also understand your fears. I do not know anything about the military or that side of the discussion. But, PLEASE be sure that you know who to call and have somewhere to go if things get ugly at home. At one time I was told by the social worker to stash some things with a friend, like an extra set of car and house keys, a calling card, some cash, a change or two of clothes for us...just in case I needed to leave quickly. Hopefully it will not come to that. Good luck.

Being a veteran myself, I find it a little hard to believe that the Navy wouldn't kick him out first if he had issues.

The doctors in the military are just as bad as the doctors we see for HD. 1/2 of them have to look it up on webMD before they know what you are discussing. There isn't vigourous testing either.

If he has HD, then his judgement and performance will deteriorate. You can force the issue and you may get some relief through a medical discharge if you are lucky. It will depend on what sets off the procedure.

If you want to make sure you have health benifits, then move to Tennessee and you can get free TennCare. You can have some coverage via state programs for welfare and medicade.

You must consider the possiblity of taking care of him and working full time if he does indeed have HD. He can get disablity from the social security at some point. At that time HE will be eligible for Medicare, however you and the children will not.

If he has HD, that will happen at some point.

You must protect yourself too.