- Alberta parent of handicapped patient seeks adequate Xifaxan coverage

Hi everyone. I write this to tell you the story of a wonderful young lady,26 living in the beautiful province of Alberta. She has a number of ailments including but not limited to epilepsy, type 1 diabetes, asthma, depression, high anxiety just to name a few. about 4 -5 years ago she developed a stomach issue that caused her to have vomiting and severe diarrhea. It was so bad that she could not eat without throwing up and the constant runs left her severely dehydrated. This would cause her blood sugar to react and we went to the hospital many times. Eventually she was referred to the GI clinic at the Foothills where she met a great GI doctor. After a number of test she was diagnosed with Gastroparesis, He put her on Rifaximin and she has been on the drug for over 2 years. It changed her life. The stomach issues practically disappeared. In January she was told this medicine is now in Canada under the name of Zaxine and she has to pay for it! She is on AISH and they have refused to pay for it. The GI doctor has made at least 3 appeals and the ******s still will not pay. She is down to her last $100, and the seizures have increased due to the stress. She is depressed and feels broken again.What do we do? We have petitioned government and we are not done but we keep getting no. It is her right to have a life full of opportunity. She did not ask for this. She is a good human being that deserves to live without pain and suffering. But the Government says no. What a mess! I look forward to your comments and suggestions!

Chelseafan - so sorry to hear about your daughter.

I'm from Alberta too, but not nearly as ill ... was taking Xifaxin (Rifaximin) for Hepatic Encephalopathy from Hep C cirrhosis. It was suddenly stopped a few months ago ... they couldn't even fill the rest of my prescription ... the plan was just abruptly ended ... the docs didn't want to talk about it but they were frustrated too. Since I just moved from Calgary to Edmonton, I am scheduled to see a new hepatologist next week ... I will bring it up to them but I'm pretty sure it isn't their fight, but ours. I'm on Alberta Works prescription coverage and it is extremely limited. I checked into Zaxine, too, but only the private health insurers were covering it and there was no manufacturer's help plan except for Americans. No Blue Cross yet. I WAS told they have to review their drug lists annually though so perhaps a letter writing campaign NOW would help that process. I haven't done anything in this regard because of my upcoming appointment.

For the moment I'm in constant fever pain (which may or may not be related), experiencing increased HE, and just "hanging on" waiting for the appointment.

Neomycin is apparently an alternative to Xifaxin (Rifaximin) . I haven't discussed that one yet either. Will let you know if I learn anything new. It likely has to be taken on a different regimen but it's absolutely worth mentioning to the docs. One of our members took it with some success.

I think we have a fight on our hands. I'm assuming if your daughter is on AISH that she's an adult and not likely to be covered on your medical plan. That European drug coverage alternative ML mentioned might be a good way to go. ML knows about fighting ... she's had to fight HUGE battles for drug coverage through the years to keep her husband alive. I tried contacting the media but got no reply and since I moved didn't follow up here yet. As ML says though, we can't give up.

We might have a better chance now .... with a new provincial government on the horizon!! ANY more provincial dollars for health care would be a great achievement over the former policy. As soon as I get some answers next week I'll decide my own course of fight. Will let you know. I only hesitate because I don't know all the implications of my new symptoms. Let me know if you need supporting letters or anything else I could do to support your fight.

Chelseafan, I believe I replied to you in another thread the other day...have you attempted to contact GlobalTV and specifically the "Troubleshooter"?

I know in Edmonton they have Julie Matthews globalnews.ca/author/julie-matthews/

[email protected]

Julie helps alot of people in the province and this week its thier 20th anniversary for the Troubleshooter segment of the evening news and perhaps Julie can help you?

Here's a few things she has helped solve globalnews.ca/news/1249704/troubleshooter-anniversary-julie-matthews-most-memorable-stories/

Good luck and keep us updated.

Way to go! You were successful and this will make such a difference for Chelsea. Big Hugs

I also want to say well done!! For myself, they put me on Flagyl which my plan covers. I was on it for about 2 months ... and it worked way better than Xifaxin. I feel better than I have in years. Still having to take lactulose but a reduced dose ... and I have the option of going on Flagyl when and if I need it. Doc says go on 3-5 days, go off. Since Flagyl does run the risk of making your body more susceptible to antibiotic resistance ... it's a risk. Thankfully after that initial treatment I have not needed it again.

I guess there's more than one way to succeed ... and we all are so different. I love Flagyl and wouldn't go back to Xifaxin.

But so happy for your daughter and you ... I'll just bet you've had other mountains to climb with her condition. Bless you heart for never giving up.