nasopharyngeal cancer/Agent Orange link legislature

vietnamvetwife68

vetswife said:

It seems H.R.3209 did not get reintroduced because the sponsor did not get reelected. After other attempts, I again emailed the one reelected cosponsor Rep. Gutierrez to try to find out if he will reintroduce it. I have contacted my local Rep.Mary Bono but haven't gotten anywhere yet.

I suggest everyone email Rep. Gutierrez and their local Reps. Because this cancer is so rare, I'm trying to find out if we can get VA stats on how many Vietnam vets had Nasopharyngeal Cancer.

I don't know how many served in Vietnam. But the average number of Nasopharyngeal for the general American population is about 1 in 100,000 - 200,000.

I especially want to find out if any others that served on the U.S.S.Oriskany got it - or is my husband the only one? Since the population on a ship is so small, if even one other had it, that would be important. (Especially if more than 2).

Since Respiratory Cancers are already included that should be including Nasopharyngeal.
Even Wikipedia, the free encyclopedia (Redirected from Nasopharyngeal cancer)says it is:
"Nasopharyngeal carcinoma (NPC) is a cancer originating in the nasopharynx, the uppermost region of the pharynx or "throat", where the nasal passages and auditory tubes join the remainder of the upper respiratory tract."

Here is the address Rep. Gutierrez's office told me to use: Natalie.Angelo@mail.house.gov

Does anyone else have any info. on what we can do?

hi
My husband also had nasopharngeal cancer. But this makes it the 3rd time since 2005. Waiting for the treatment option from doctor. He served in the Marines in 1968.

dejohnso

HAWVET said:

Agent Orange Update
Concerning Nasopharyngeal cancer (NPC), it is a double whammy for Navy personnel who served off shore. The VA had not allowed claims to Agent Orange. At present, the best thing is to await the decision of Jonathan Haas versus the VA. The case was reversed back in 2006 favorable to Navy personnel, but not finalized yet. Google his name or Blue Water Navy and follow the case. This is your best hope.

The second whammy is the cancer had been determined not to have been caused by Agent Orange. At present, it sits in the third category. If it can be moved up to Category 2, then we may stand a chance. Hope is not all lost since a doctor’s statement may give the veteran a small chance of winning his claim.

As you can tell from this thread, legislation is a method, but not the answer. I believe the Congressman had submitted the bill as a token response to a constituent’s request. There were only two other supporters. Unless there are many supporters, the bill would just have died and not go anywhere. There are 435 House members. A similar bill would also have to be introduced in the Senate.

The key is getting to the basics. The primary determination of what illnesses were associated with Agent Orange goes back in the early 90’s. The VA tasked Admiral Zumwalt to do a study and then ignored his recommendations. Then, the VA went to the National Academy of Sciences (NAS). The Institute of Medicine (IOM) of NAS was given the task of studying Agent Orange. The basis of VA’s final determination is probably from their biennual studies and reports.

As part of VA’s responsibilities, they were required to enter into the Congressional Record, a summary of what illnesses were caused by Agent Orange. Although NPC was in the category of limited/inadequate evidence, the VA’s decision was to enter into record in year 2002 that there was no association. That is now generally the basis for the disapprovals.

The IOM meets every two years. The last report was Agent Orange, Update 2006. The new committee members are from throughout the country and funded by the VA. They met three times in 2008 and are meeting again on February 10. The release, Update 2008 should be later this year or in early 2010. Unless there is a change in their recommendations, we sufferers of NPC will probably not be successful. Google IOM committee and Agent Orange for more information.

I started a thread and was hoping to get responses. I thought with a flood of letters to the committee with statistical data, we may have had a chance. I did submit a packet for their review. One testimony would probably not have significant impact.

Agent Orange Update - IOM
I sent information to the IOM as well and have given the contact information to several other veterans that have tonsil cancer. The contact person is Mary Burr Paxton - if you send information on NPH or tonsil cancer or any others she will make sure it gets passed on to the correct person.

MPaxton@nas.edu
Mary Burr Paxton, PhD, DABT
Senior Program Officer
Population Health and Public Health Practice
Institute of Medicine
Keck 871, 500 Fifth St., NW
Washington, DC 20001
(202) 334-1731
fax: (202) 334-2939

Unknown

Mar said:

Navy Link
HI ToniY,

Do you happen to know which ship your father was on in Vietnam? Was it the U.S.S Coral Sea or the U.S.S. Oriskany by any chance? Please reply and let me know. My husband was just diagnosed with this cancer in Dec. 2008 and is battling it now. Trying to find a link for our Navy men and it seems that the Oriskany was the ship most mentioned in other blogs.
Sorry for your loss and I know he's very proud of you.

This comment has been removed by the Moderator

QuinCLG5

Mar said:

Navy Link
HI ToniY,

Do you happen to know which ship your father was on in Vietnam? Was it the U.S.S Coral Sea or the U.S.S. Oriskany by any chance? Please reply and let me know. My husband was just diagnosed with this cancer in Dec. 2008 and is battling it now. Trying to find a link for our Navy men and it seems that the Oriskany was the ship most mentioned in other blogs.
Sorry for your loss and I know he's very proud of you.

Cancer in the Navy
Thought I would throw my hat in. I was diagnosed with this cancer in 2005. Was treated with allot of radiation and 8 chemo treatments. So far the cancer is gone. I have several side effects. I have been trying to navigate through the system as well. I was stationed on the Oklahoma city, from 1971 though 1974. I was a gunner. We were exposed to emissions from the guns as well as asbestos, in addition to exposure to the agents that made their way by runoff into the bays and coastal areas around Vietnam. I would sure like help, and will give any I can.

lindaks

vetswife said:

Nasopharyngeal Cancer
I've been researching for 3 years now. The bill in congress just went away when the politicians didn't get re-elected. I tried to get our CA congresswoman to pick it up. But since NPC only occurs normally in 1 out of 100,000 American men, my husband's probably the only one in her district. So she didn't do anything. And now we've had a new election. Maybe someone can get it going after the new year. My husband was in the Navy and until we hear further, Blue Water Navy aren't getting any AO benefits. I'm also wondering about the PCB's they had to get rid of before they could sink his ship, the USS Oriskany. Did you step foot in Vietnam? Did you have any medical issues while in the service? I hope your treatments have gone well.

My husband was on the U.S.S.

My husband was on the U.S.S. Enterprise from 1968-1972.  Went to Vietnam 3 times also was in the Phillipines.  He was diagnosed with stage 4 NPC in Oct 2005, underwent radiation and chemotherapy.  The Dr's did ask about being exposed to agent orange. He did survive, but has some effects from the treatments.  We did not even try to get VA benefits because we were told it would be denied.  The Enterprise had a huge fire on the flight deck in Jan 1969 burning several planes.  They carried agent orange on these planes and stored it on the ship.  Have you had any luck with your VA claim?  My email is linda_sullivan68@yahoo.com.  Thank you