Unfairness as far as med approval for UC

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/12/2008 5:01 PM (GMT -6)   
Am I the only one who thinks this is ridiculous how we can't get some meds that ARE available for Crohn's?  Like Humira, I guess it's in the process of being approved for UC, but it is approved for Crohn's, also I had problems and had to wait a while to start Remicade for the same reason.  We need help as much as people with Crohn's, I think this is totally stupid how I have to go through a rejection for meds and wait when my health cannot afford to wait!  What can we do?
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/12/2008 5:14 PM (GMT -6)   
EVERYTHING gets approved for Chrons first! All the trials are for Chrons first... SO annoying!

*end of rant*
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-MP twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xteaspoon of Metamucil smooth powder 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day;
    - 3xGarlic Oil caps 2 times a day, 5mL Olive Leaf Extract 2 times a day.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/12/2008 5:17 PM (GMT -6)   
It's very frustrating, I agree, but the whole drug approval process has kept us from getting some drugs in circulation that were harmful in other countries. The classic example is thalidomide, which was used for nausea during pregnancy in Europe. Turns out it causes birth defects, and thousands of babies were born without arms and/or legs as a result. It was never released for use here because it was still being tested.

I also had to wait for Remicade, so I totally sympathize. My understanding is that Humira has been showing the same success rate as Remicade, making it a viable drug for people who don't respond to or can't take Remicade. Hopefully it will be approved soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5075
   Posted 2/12/2008 5:22 PM (GMT -6)   
@ least with UC we have a cure....

Princess,

Humira is FDA approved for Psoriatic Arthritis, you probably can get your insurance to approve Humira for that DX http://www.humira.com/PsoriaticArthritis/Default.aspx


--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/12/2008 5:43 PM (GMT -6)   
Since diagnosis for Crohns and UC can sometimes be confusing, if you really wanted to go on Humira and had insurance issues for off-label use, could your GI decide that perhaps your UC was possibly Crohns? At least on paper, then you could get the Humira.
Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, 1/30, 30 mg. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/12/2008 6:21 PM (GMT -6)   
Look at it this way, they use us crohnies as lab rats for UCers, besides which, those drugs, remi and humira are not the wonder drugs you might think...go read the crohns board and see how insignificant they actually are for many CDers.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/13/2008 12:46 AM (GMT -6)   
I emailed the CCFA about a different drug approval issue and the email I got back had this helpful advice:

"... you may want to contact the FDA (Food and Drug Administration) to find out if they may be considering approval for this drug and any information on the process of getting a drug approved in the U.S. Their contact information is below:

Division of Drug Information (DDI)
Office of Training and Communications
Center for Drug Evaluation and Research
U.S. Food and Drug Administration
U.S. Department of Health and Human Services
5600 Fishers Lane, HFD-240
Rockville, MD 20857-1750
(888) INFO-FDA (toll-free)
(301) 827-4570
druginfo@cder.fda.gov
http://www.fda.gov/cder/offices/ddi/

You could call their toll-free number and see if there's an easy way to voice your concerns. Maybe they log the number of calls they receive about particular issues or can tell you where to send an email request. When I get a free moment (ha!) that's what I was planning to do about a different drug issue.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


BlizzMan
Regular Member


Date Joined Mar 2006
Total Posts : 40
   Posted 2/13/2008 10:14 AM (GMT -6)   

I recently had to switch to Humira after Remicade stopped working.  Initially, no problems insurance covered it.  But recently after being on it for 3 months I got a letter saying they were not going to cover.  Wow!  I added the cost of the Remicade up and the Humira is by far much cheaper.  

 

While I understand abut the approval process it is not like this medication is not being widely use for other things and it is only possible that it would be helpful for UC.  It is helping and it is cheaper.  But I guess that does not figure into the equation.


Blizzman
 

Diagnosed 1996

Meds
Remicade, Prevacid, Azathioprine, Azulfidine
 
Supplements
Iron (ferrous sulfate), Omega 3, Vitamin E, C
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 623
   Posted 2/13/2008 11:38 AM (GMT -6)   
Does anyone else think it's just incredible -- INCREDIBLE -- that one infusion of albeit a cutting-edge drug can cost 12,000? I find that simply incredible.

When will the madness end?

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5075
   Posted 2/13/2008 1:41 PM (GMT -6)   
Mitz,

It's a numbers game.... the insurance company doesn't pay that amount; I don't think they even pay close to that amount.


--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 623
   Posted 2/13/2008 1:45 PM (GMT -6)   
Well, that in itself is part of the problem, Keith. When I did not have insurance, I paid a lot more than insured folks. How unfair is that?

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/13/2008 1:46 PM (GMT -6)   
I rechecked my insurance billings last night. My infusions are now billed at $10,000. The insurance company pays about half that after the discount. As more of us use the drug and other drugs come out that give patients and doctors a choice, the cost will probably go down. I felt guilty about taking the Remi until I sat down and figured out how mucy my employers and I had paid out in health insurance premiums for the decades when my health was good and I rarely used it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 623
   Posted 2/13/2008 3:17 PM (GMT -6)   
Hey, Judy, don't YOU feel guilty. Heck, it's not your fault you have this awful disease.

I guess we'll pay just about any price for our health, cuz without it, we have nothing. I don't understand the need for drug companies and hospitals to charge twice as much as they know they are going to get paid? Does every insurance company pay a different percentage? Or why don't they just charge what they insurance company will pay?

I remember when I was in therapy, after about a year, the doctor, when I complained about $100 for each visit (this was, golly, 20 years ago, when $100 was a lot of money), she said, "Well, we'll reduce you down to what our insured patients pay." Huh? Some people pay less? And they probably get insurance as part of their employment (or they did at that time), whereas I had to pay for only catastrophic coverage, and that wasn't deductible. But that's another battle.

Something was (and still is) really screwy about that.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/13/2008 3:30 PM (GMT -6)   
Mitz, the insurance carriers negotiate "discounts" with the providers. It seems to usually be in the 40-60% range. Then they hike their prices to twice what they really need to cover expenses, because if they didn't they'd go broke. $5000 seems like a lot, but most of that cost is for the medication. We also have to pay for the facility, the equipment, the nurses and other staff, the pharmacist who dispenses the medication, the facility's, nurses and doctor's insurance, etc. It adds up pretty quickly, unfortunately.

At least here, I know the hospitals are all non-profit and often have trouble making ends meet. They're required to provide a certain amount of free or extremely fee-reduced indigent health care, Medicaid and Medicare rates are low and everything they buy costs twice as much because it's for medical use. The solution to our health-care crisis isn't easy.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 623
   Posted 2/14/2008 9:06 AM (GMT -6)   
But isn't that a strange way to do business, Judy? It's like ~wink,wink~ here's the charge. Everyone KNOWS the insurance companies won't pay it. And, of course, those with only catastrophic coverage end up paying full price, which I doubt is the hospital's intention.

I remember paying for my first colonoscopy, and I thought the hospital was so kind to allow me to make payments over time with no interest. Little did i know that I was probably paying twice as much as the insurance company would pay for identical services. That is just an unfair and ridiculous way to do business, IMHO.

I'm not faulting the hospitals, Judy. I understand insurance companies have pushed them into a corner on this way of operating. And I recognize as well that hospitals provide lots of care that is uncompensated.

The whole thing is just an incredible, frightful mess.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/14/2008 10:10 AM (GMT -6)   
My GI was naughty and said that I had Crohn's/Colitis so I could be approved for remicade because it wasn't available for UCers yet
Sam
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/14/2008 11:06 AM (GMT -6)   
If you're uninsured, always ask the doctors and hospitals for reductions. You'll may have to jump through some hoops, but often you'll get it. If you don't ask, you'll get stuck paying full price for sure.

Yes, it's a screwy way of doing business, but I've decided since I have no control over that, I'm going to stop worrying about it and just find ways around stuff. Keeps my stress level and my bleeding down. I'm amazed at how philosophical I've become since developing this DD.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5075
   Posted 2/14/2008 11:22 AM (GMT -6)   
MitzMN said...
But isn't that a strange way to do business, Judy? It's like ~wink,wink~ here's the charge. Everyone KNOWS the insurance companies won't pay it. And, of course, those with only catastrophic coverage end up paying full price, which I doubt is the hospital's intention.

I remember paying for my first colonoscopy, and I thought the hospital was so kind to allow me to make payments over time with no interest. Little did i know that I was probably paying twice as much as the insurance company would pay for identical services. That is just an unfair and ridiculous way to do business, IMHO.

I'm not faulting the hospitals, Judy. I understand insurance companies have pushed them into a corner on this way of operating. And I recognize as well that hospitals provide lots of care that is uncompensated.

The whole thing is just an incredible, frightful mess.

Mitz

Mitz,
 
They weren't doing you any favors..... I think by law they are not allowed to charge interest.
 
You should always try to negotiate things; I got my prometheus Labs bill lowered by 20% because my insurance wouldn't cover me for it.
 
--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/14/2008 11:51 AM (GMT -6)   
Things are starting to change. The phase 3 Adacolumn Apheresis studies for UC were started almost a year before they started the studies for CD. Unfortunately the results weren’t very good and it probably won’t be approved for use in North America. The Phase 3 studies for Abatacept are being conducted at the same time for both UC and CD.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

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