I'm losing access to Humira

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ivy6
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Date Joined Sep 2005
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   Posted 9/2/2008 7:09 PM (GMT -7)   
We have subsidised medicine here in Australia, but because Humira hasn't been subsidised, a lovely hospital has been buying it for me. I've been in a severe flare for ten years and they decided I needed some help and relief.

Humira recently came on the list of subsidised medicines, and our oh-so-compassionate government ruled that anyone who started Humira between November '07 and August this year (ie people like me) have to go off the drug and get really sick, just to prove that they need to be on it.

No exceptions whatsoever. It's a watertight rule.

And Humira is the last drug available to me. And it was INCREDIBLY hard to qualify for it in the first place.

I have no family here and I lost my home help due to budget cuts. I've desperately been clawing my way back to some semblance of normality... and I feel like it's being ripped away from me, all because of some stupid, cruel, bureaucratic rulling...

The government is handing out tax cuts to all and sundry. We have a huge surplus in our national budget. What's wrong with being compassionate and spending some of that money to give medicine and support to people who NEED it??

Ivy. cry
Co-Moderator Crohn's Forum.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 9/2/2008 7:12 PM (GMT -7)   
((((((((((((((((((Ivy))))))))))))))))))))))))))))) I am so sorry.
I would try to talk with humira's makers. Could your doctor say something about how humira is less likely to work the second time?
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 7:13 PM (GMT -7)   
The doctors have been fighting and arguing for six weeks now. Nobody's listening.

Thanks for the hug, Navy.
Co-Moderator Crohn's Forum.


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 7:16 PM (GMT -7)   
btw, that is right about it not working as well the second time, isn't it? The nurse who handles the Humira patients here here says it's ok to go off it and then back on, but she also says that most of her experience is working with people who were maintained on the drug.

I'm sure there are people on this forum who had to go off it, and it never worked as well again. Can't remember who they are, though.
Co-Moderator Crohn's Forum.


*Phoebe*
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Date Joined Sep 2005
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   Posted 9/2/2008 7:20 PM (GMT -7)   
Ivy, I am so sorry to hear about this. Its awful awful news. You need relief, and this is the only medicine which seemed to grant it to you. HUGS HUGS HUGS. I hope you are ok and managing this news – have you got any back up options at all?

I’d love to see these Aussie politicians suffer a flare and experience just how debilitating it is.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 7:24 PM (GMT -7)   
No back-up options, Phoebe. There are no other meds.

Re the politicians, absolutely. I was a total Kevin07 girl, but now I'm not so sure...
Co-Moderator Crohn's Forum.


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 9/2/2008 7:28 PM (GMT -7)   
I am so sorry. That is so horrible-I really wish there was something I could do to help.
Sj

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2008 7:28 PM (GMT -7)   
I think a lot of people are regretting their kevin-07 enthusiasm... I just wish there was something that could be done. Does your CD not respond to Pred?

I wish there was something nice I could say to make it all better, but I know in these situations there really isn't. How much does it cost if you had to pay?

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/2/2008 7:29 PM (GMT -7)   
Here is a big HUG Ivy. I agree that you should contact Humira and try to get it through their patient assistance program.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 7:38 PM (GMT -7)   
Fitzy, this isn't America. I'll ask about it when I see the docs, but there isn't an assistance programme here, as far as I know. Abbott has a compassionate allowance for people who haven't been on a TNF medication before, but I was on Infliximab a few years ago.

A similar thing happened to me with Infliximab. I was put on it years ago when it was still slightly experimental (here) and not on the PBS. Nobody would buy more than three doses for me, so the med wasn't maintained. I lost access after those three doses, was left INCREDIBLY sick for **years**, and by the time I was granted access to the med again, too much time had elapsed and I had a horrible reaction. So, no more Infliximab for me either.

Anyway, thanks for being there to talk to during the initial shock. I've picked myself back off the floor again, and have had my little cry.

The really sad thing about this is that I was *just* starting to feel strong enough to think about maybe volunteering for an hour or two a week, and building up from there to maybe getting a little job. Instead of having an active, involved, healthy and happy citizen, the govt is getting a sick, housebound, isolated and upset one. Even if I can go back on the med and it works as well as it does not, it'll take at least another six months to get back to where I am now...


I. cry
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/2/2008 7:41 PM (GMT -7)   
Oh Ivy, I thought the program was for people everywhere, not just in America. It is not paid for by the government. If I can find info on it I will send it to you. Still so sorry for what you are going through.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/2/2008 7:45 PM (GMT -7)   
http://www.needymeds.com/papforms/abbhum0323.pdf
 
That is what I was referring to.  It looks designed for US patients but I don't see why it couldn't be used for others.  It includes people with insurance that does not cover Humira and those that are uninsured.  There are spaces for explanations.  You could put that you are losing your ability to obtain your medication.  The worst they could do is say no.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/2/2008 8:02 PM (GMT -7)   
I'm pretty sure ALL bureaucratic decisions on providing a patient with medicine are a joke. I can't even try humira until I've been sick for SIX MONTHS to prove that I even qualify.
I'm so sorry you're going through that. I know mine isn't the same so I can't know the relief of it and the disbelief at having it taken away from people who have no idea what they're deciding, but I think I have some idea..
I really wish that the doctor's opinion would count more than some distant group of people who don't even know what it's like to suffer through this disease. It's just wrong.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 9/2/2008 8:48 PM (GMT -7)   
Oh Ivy - what a lot of crap. This is so wrong! Makes you want to take up a new identity and get the Humira that way! I too was a Kevin07 voter, what choice did we really have - Abbott and Costello!
On my bad days I would never wish this disease on anyone, now I have a whole Parlaiment to wish it upon!
Im so sorry (((((HUGS)))))
jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 10:00 PM (GMT -7)   
LMills, we have the six months (well, its equivalent) rule here too. But consider that for me this flare has been going on for ten years. I've tried everything; proved that everything doesn't work; this is just ridiculous.

Thanks, Jo.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2008 10:24 PM (GMT -7)   
I tried to look at that Abbott med help site, but it makes my browser disappear every time I try to load it. Thanks for the reference, though - I'll tell the docs about it.
Co-Moderator Crohn's Forum.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/3/2008 5:54 AM (GMT -7)   
All the more reason that your situation is so infuriating. It shouldn't be that way...
I'm just in disbelief that they could do that to you.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/3/2008 7:00 AM (GMT -7)   
Ivy, you need to have adobe to read the PDF. You can download the program for free. That may be why you couldn't open the link.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 9/3/2008 9:44 AM (GMT -7)   
I'm so sorry Ivy - that's so terrible. I don't know what I'd do if I was in your shoes. I feel very bad for you. I sure hope some solution is found. I just want you to know that I'm feeling for you!

Bev

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 9/3/2008 11:04 AM (GMT -7)   

((((((((((((ivy)))))))))))))))))

I don't know what to say... maybe some kind of letter to them begging for free Humira?

It is just awful you have to stop taking something that is working for you....

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 9/3/2008 4:44 PM (GMT -7)   
Oh Ivy- This made me feel sick just reading it. I am so sorry hun!! How awful! I just can't even imagine. I would be going and knocking on someone's door demanding the need for this medicine!!! ((((Ivy)))) I'm sorry you have to go through this. The stress of it alone is going
to probably get you started to not feeling well. :-(
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 5mg every other day- I am almost off!!  YAAHH!!! :-)
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/3/2008 5:25 PM (GMT -7)   
Hi Ivy Do you have a TV station that would put this on TV maybe some pressure from the media would swing the gov. Hoping that Humira will help you in your situation .Ask your Dr. to keep at them it is for a medical person to be making such decisions . Wow I cain't believe that they would just cut you off like that and your home care as well .Hang in there maybe if enough people keep after them they will help.Do you know any good politicians you could call, newspapers?? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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