Topic: any help available with copays?

Hi, my name is Cindy. My husband was diagnosed with Cholangiocarcinoma a couple months ago. He has stage 4. He has good days and bad days so far. He is taking Gemzar as his chemo. He had a port put in. I am looking for help on this site as the chemo is not fully covered. If anyone has any info on who helps with chemo co-pays it would be helpful. He was in the service in the 60s and was in Korea for a year. I am finding out about a parasite from there for drinking the water there and eating the fish. That could be the cause of this cancer, I have filed with the VA on this...does anyone have any info on this being the cause of their cancer? Thanks ahead for any info.

Re: any help available with copays?

Dear Cindy, welcome to our amazing family but sorry you had to find us. My husband also served in Korea. We do know that there is a Parasite in Asia called Liver Flukes. It attaches itself to the inside and lives there about 30 - 40 years. There is NO way to detect it. Then it leaves, and leaves behind CC. You might want to google it. There is now research being done on it in, I think Taiwan but not sure if they have conclusive proof yet. We do have a number of VETS from Korea and Nam who have come down with CC. Not aware that the VA is doing anything about it as of yet. Some members have tried, like Darla and I am sure she will come forward for you on this. I just wanted to welcome you and please keep us posted on your husband...wishing you the best.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: any help available with copays?

Thanks for the info and I have found quite a bit about it on the internet. This lady has a site about it and its very interesting. She is also sending me more info on it in the mail.
http://vfwpost10320.tripod.com/id40.html
The VA proved her husbands CC was 100 percent service connected.

Re: any help available with copays?

Wow! Wow! Wow! Cindy. This is excellent. The problem is now where to go from here? I think it can be very hard to prove. For instance what about all the people in the States who have never been to Asia. BUT, never fear I have an idea that our dear PCL may jump in on this one!!! What say you PCL, O wise one??

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

5 (edited by PCL1029 Mon, 05 Mar 2012 18:49:02)

Re: any help available with copays?

Hi,
New cases of cholangio CCA in South Korea is about 3,500 cases per year according to the stats from the National Health dept.of S . Korea.
If you can prove that your husband's CCA was caused by the eggs or even better by the worms ( the tissue  slides from surgery or biopsy);then you will have a strong case; otherwise the chance is not in your favor to get VA help.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: any help available with copays?

Hi Cindy,

Welcome.  Glad you found us.  You have come to the right place.  Everyone here is so very helpful and informative.  There is no other place you will find as much info on CC as here.

As Lainy said I have been trying for 3 1/2 years and have gotten no where with the VA.  Sheila is a good person to be in contact with.  She has given me a lot of information and help, but so far the claims are still being denied.  I'm only aware of 7 or 8 who have been successful and usually there are other circumstances invloved.  My case is even harder as my husband was on an air craft carrier and I can not prove he stepped foot on land.  It is a long and often  frustrating process, but I continue to monitor it and gather any information I can.  If anything changes I will definately let you know.  Filing with the VA is the first step and you have already done that, so you atleast have a foot in the door.  Hopefully you can atleast get some help with the copays.

Know that I am thinking of you and your husband and hoping for the best.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: any help available with copays?

Thanks for the info Darla. My husband served in Korea, and he even drank the water from the rivers over there and ate the fish and thats where they are saying you can catch this liver fluke. Like you say I made the first step and all I can do is try. Keep me updated...thanks...Cindy

Re: any help available with copays?

Continue to pressure the VA.  As Darla mentioned, it may not always work howerver; the more people bring attention to this matter, the better the odds.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: any help available with copays?

Cindy:

My husband Tom was classified as non-service connected disabled and was able to get a pension from the VA for about 16 years.  His pension was $985.00 a month and all of his medical care that he received from the VA was free.  He did not even have to pay a copay for his meds - most of which came from the VA.

Has your husband checked in with the local VA to file for any type of disability, service or non service?  If he has not done so already, please do it.  They may be able to get him classified as disabled and he may be able to get a non-service disabilty pension along with medical care. 

Tom and I did switch to civilian doctors but his initial surgery and a lot of his follow up care was with the VA - as much as possible but for radiation and chemo we did it locally because of the travel time to/from a VA facility.

One of the nice things about using a VA facility - generally if your insurance does not cover their charges, the VA does not bill the Veteran.  Also you can check if the VA is in or out of network with your insurance.  The VA is trying to become in network with most insurance companies as they are now billing private insurances.  Shortly before Tom passed, they became participating with our private insurance.

We also filed a claim with the VA for Tom's CC, but it was declined.  I have not yet appealed the decision because I have been dealing with Tom's death, etc. but I do plan on appealing it.  It is very hard to prove, their standard "You did not have any symptoms upon discharge from the service or during the service, and you were a smoker" therefore the claim is denied is pretty standard.

Good luck,
Margaret

Re: any help available with copays?

H Cindy,

My husband got all of his medical through the VA starting several years before he got sick, and there were no copays.   If they are now working with private insurance, you could possibly get help that way.  Jim never had chemo so I'm not sure how that would have worked, but I'm guessing the VA would have taken care of that, too.

Unfortunately, he never didn't get disability as he declined so rapidly we  didn't even have a chance  to apply.   You may want to check into this. 

Jim served on an aircraft carrier off the coast of Nam in the late 60's.

The problem with proof is that by the time the CC manifests all proof of infestation are gone.  The way I understand it is the infestation does not show up intially and that the parisites cause abnormal cells to form that 30 to 40 years later cause the disease.  The parisites are long gone by then.

All any of us can do is just keep trying as I do believe that some day the VA will have to recognize this disease as being service related for those who served in Korea and Nam.

Take care.  I hope you can find some help with those expenses.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.