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Financial problems from having IBD? Anyone??

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Crohn's Disease
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Posted 2/2/2008 1:23 AM (GMT 0)
I am a little bit worried about possibly having IBD...I have health insurance but reviewing the cost of the tests I have had recently REALLY scares me!  I had the Prometheus Blood Test and that was nearly $500 and I think my health insurance sees that as an "experimental test" so I don't think they are going to cover it.  Then looking at what is left over after having the scopes...yikes!  How do you all do it and are your doctors and clinics willing to do payment plans for you? 

I am supposed to go back to the GI doctor on Tuesday--I have mixed feelings about that--and if she orders another test I honestly wonder how I will afford all of this!  sad

Posted 2/2/2008 2:54 AM (GMT 0)
Does your employer or whoever you get insurance through offer more than one insurance plan? We have to go with the hmo from my husband's company becuase we couldn't afford to do a ppo. Yes, it is a pain getting referrals and all that, but my pcp is the best when it comes to that. I have never had a problem getting a referral from her. An hmo is by far the cheapest for us. I pay absolutely nothing for my remicade.
Posted 2/2/2008 2:57 AM (GMT 0)
Between cobra insurance and co-pays, esp humira, I will slowly go broke. I am having my 4th upper endo (3rd ERCP) within 2 1/2 months next Friday. I do keep up with the dr office co-pays as I go because I need my docs. The hosp is getting out of hand though, because I have all my labs, radiology studies and procedures done there. So will set up some kind of payment schedule with them.
Posted 2/2/2008 6:00 AM (GMT 0)
I hope that you do well. If you don't get all the scopes and stuff now, a hospitalization down the road could cost you much more. A lot of medical bills can be paid month by month if you set up a payment plan with them.

That being said, this disease has been the end of my financial well-being. First hospitalization put me in debt $10,000. I got that paid off after a couple of years and then about year later had another hospitalization and then two surgeries. I'm still waiting for the final tally on those but I was out of work for 2 months and lived off credit cards during that time which adds to it.

You just can't worry about the money, your health is more important. You can file medical bankruptcy at some point if you have to.
Posted 2/2/2008 7:03 AM (GMT 0)
Well luckily my parents still pay for everything...praise the lord because I would literally be living under a bridge. (not to freak you out) I have had 4 hospital stays between Sept. 28th and January 6th of this year, and that racked up a total bill of 75,000 dollars. I also recieve remicade every 6 weeks, which with all my darn pre-meds is about 5,000 bucks. In four months I have also had 6 CT scans which cost quite a bit with each one. I am also having my second endoscopy since November, which is spendy. My new GI literally costs 473.00 per visit, but she is a crohn's disease specialist, glorious and well worth it. She's awesome, and I love the hospital so if I had to go to one I guess I am happy I am there...uugh. Another big cost is when I go to Cali for the summer to work at a glorious camp for chronically ill kids. I have my GI at Ceder Sinai, and also one at UCLA...so that adds up quickly. However I am a crazy case, and seem to confuse docs cause I have a long medical record (since birth) and I need some seriously good care. I am just so thankful that my parents are so willing to pay for my medical care. I love em. I am nervous though when I am in the real world and paying for my own healthcare.
Posted 2/2/2008 5:07 PM (GMT 0)
I am the same as chroniemomx2, I have a HMO. Its only costs $20 to see my doc, $20 for a scope and $5 for all prescriptions that come in generic form and $15 for name brand. If you can, change to a HMO, its way cheaper. She's is right it takes a little longer on referrals etc, but in my opinion its worth it for me.
Posted 2/2/2008 5:53 PM (GMT 0)
I also think the key to staying afloat financially is just making sure you ALWAYS have health insurance. It may mean taking your second choice job or having a spouse have to take their second choice job but going without is really not an option for us unfortunatly.
Posted 2/2/2008 8:20 PM (GMT 0)
Sometimes you have to fight with the Insurance Company to pay for Prometheus. Need backup from your GI saying it was a necessary diagnostic tool. Sometimes you just have to appeal to the Insurance Company to get things paid. Many, many times they will pay with the right documentation.

Before agreeing to any future testing, have the Billing Person of your GIs Office check with your Insurance Company ahead of time to see what will be covered and what won't. That saves some surprises down the line.

Be open and honest with your GI and let him/her know that you aren't willing to go into major debt for things not covered by your Insurance but are willing to make payments for what absolutely has to be done.

Good communication all around will help keep you from falling into too much medical debt.
Posted 2/3/2008 12:04 AM (GMT 0)
I feel for all the fellow crohnies with insurance/financial issues like mentioned above. My husband's job offers free insurance for our family and the company is GREAT. It is a PPO and I couldnt ask for anything better. It costs me $10 for my GI visit (he bills $185 as an exsisting patient), my remicade is covered 100% and my resection surgery in July 07 was paid in full ($43000+). I recently got reapproved for remicade because of the new year and I spoke with the insurance lady who was in charge of the reapproval...she said I'm going to ok this for 20 treatments and 2 years so you won't have to worry about it for awhile. I was like HOLY COW!!! Maybe I shouldnt have said it to her, but she had already given me the comformation # so I said You do know that's over $100, 000 worth of medicine right?? ANd she said yep! I was really surprised..but glad at the same time. In 06 my total medical bills were over $35000 and I had to pay a mere $325. I am lucky..I know others don't have it this good. Often my husband comes home and complains about his job and says he wants to look for another. I have to remind him of the coverage we get for FREE -- even if he doesnt love it, something else would have to be PRETTY GOOD to get me to be ok with switching. GOOD LUCK figuring out what will be best for you!
Posted 2/3/2008 12:42 AM (GMT 0)
Chasity- I hear ya. My husband wants to look for a new job as well and I keep having to remind him he has to have ZERO lapses and just as good coverage as the great coverage he has now. At one point he was thinking of opening his own business and I was like, no you can't, I won't be insurable. It sucked. But hopefully after school I can get on my own plan again and then he will be free to job hop wherever he wants.
Posted 2/3/2008 1:30 AM (GMT 0)
Weird what different cultures find normal and acceptable. Reading these posts I am left just shaking my head. I can't imagine the stress you all must live with. I am so, so sorry indigo sunrise for the position you find yourself in.

Yet at the same time, coming from a publicly funded system in Canada, I'm always amazed by the tests, drugs and procedures American doctors order. I'd like to hear from any Canadian who has had a prometheus test, for example. Has anyone up north here had a prometheus test done? Anybody? If so, did they pay, did their private insurance pay or did their provincial medical insurance pay?
Posted 2/3/2008 1:37 AM (GMT 0)
Not to open up debate again but my favorite part of Sicko is when he implies that Americans can't argue with bosses or quit their jobs because that is the only way they are insured. We are slaves to the system. Yes we can find new jobs with comparable coverage... but while its possible to save some money and just get fed up and quit some day, most can't because they don't want to be uninsured. I had never thought of it that way. It keeps us complacent and quiet.
Posted 2/3/2008 2:50 PM (GMT 0)
yes, we are in a financial strain and I have had much less testing than others have so I am lucky. This disease is expensive. I went from one RX a month to a handful and the co-pays are pricey. CD meds seem to be expensive :) I guess we just keep paying on it but I can see the strain on our money. I would try to get patient assistance. Also some pharmacies offer rx discount cards. Walgreen's just started one but I don't know the details. Don't forget to discuss this with your doctor he or she may be able to give you free samples or maybe a different test that costs less but is just as effective. Good luck Karen
Posted 2/3/2008 3:03 PM (GMT 0)
Health care and medical costs are outrageous! Something that I always try to check with my doctor, and stress, is that I really only get procedures, tests, medicines, etc. that are really necessary at the time. If they are necessary, can they be spaced out and such. Sometimes people in the medical profession think that having insurance means we are in the clear and "covered". The only thing worse than crappy insurance is no insurance.
Posted 2/3/2008 7:43 PM (GMT 0)
omg i had never even thought about all those costs and things you have to pay , i live in the uk and dont have to pay for blood test, scopes, GI appointments or anything. I just have a pre payment card for tablets that cost around £90 a year for all the tablets you need, next time i begrudge paying that i wont.
Posted 2/3/2008 9:15 PM (GMT 0)
I'm a student and pay for both insurance and access to a health center, but sadly I only get a prescription discount card that isn't worth much more than the paper it's printed on. I thought I had "bad" insurance till I got sick. My hospitalization and tests last year cost around $40,000 and with more tests recently I'd say I've probably passed the $50,000 mark. I don't have to pay co-pays up front and my annual out-of-pocket max is quite low ($1800), which I suppose makes sense since grad students earn so little.

I'm afraid of what will happen in the future.... I guess having good insurance is key.
Posted 2/4/2008 6:10 PM (GMT 0)
There's no question that having CD can make you broke in the U.S..   I have insurance, but the medicine co-pays have gotten so high that my meds alone are costing me over $800 per month - and I'm not even on Remicade, Humira or Imuran.  I don't know if I can afford those higher-end treatments, even though my disease has progressed to where I think I need them.  

I was hospitalized very briefly a couple of months ago just for some hydration therapy, but I went thru the ER.   My insurance company says my deductible will be $1800 for 16 hours in a hospital getting fluids!! If I could have hooked up an IV at home with some saline bags, I would have done so.

I'm not sure what to do other than to keep my fingers crossed that a new President will actually implement universal health care that will provide more than just incentives for staying healthy (as some candidates are touting), but will actually provide financial relief for those of us who are already sick and whose insurance coverage falls way short of covering the bills.  Sometimes I feel like the U.S. government and U.S. corporations would take the chronically ill out to a field and just shoot us all, if they could. 

I also wonder if I would be better off with no insurance at all and just go to the ER all the time for treatment and meds.  I know that sounds crazy, but drug costs and treatment costs are getting sooooo out of hand in the U.S..  

I'd move to Canada in a heartbeat if I could gain citizenship in less than 5 years!!!

Posted 2/4/2008 6:58 PM (GMT 0)
I personally think it would take a lot more than a new president to fix the health care system here in the U.S. The candidates can use that as a "vote for me!" tool, but really, the problem with our health care system is spread out over so many different areas, i think it starts with the Pharma companies, whose research seems to be more motivated by profit, than by what helps people the most, this is illustrated by the fact that advertisements for medications are allowed, can't doctors tell patients what they need without the patients asking "is this medication what I need" What an idiotic phrase! it is plain absurd in my eyes!

The drug companies spend almost half of what they earn in gross sales on advertising and marketing costs. couldn't that money be spent better on research? I know they would make less if they advertised less, but maybe that's because only the people who actually need the medicine they are selling would be buying it. For heaven's sake, if someone has restless leg syndrome, do they need a commercial to tell them to see a doctor? If someone has herpes, do they need to see images of a happy couple out hiking and having a "great life" to motivate them to go see doc about some herpes meds?

Then there is Medicare fraud (in the gazillions!), poorly managed hospitals and medical groups.... County hospitals in most places have inadequate or outdated machinery and equipment....

I am grateful for myself that I have health insurance, but it is true, i live in fear that I will lose my coverage and then, the rest of my life will spiral out of control...

I am even further grateful, since I convinced Abbott to give me my Humira for free, even though I don't "qualify" for there assistance program. However, it kills me to know there are some sicker than I am, that can't get the meds they need.

ok, well, i guess I am done with my rant....

good luck to you all!
Posted 2/4/2008 7:46 PM (GMT 0)
Glad Bag -

I agree that the U.S. health care problem is a very complicated, intertwined mess.  It's sad so many Americans are forced to order drugs from Canada, or do without, because they can't afford them from their local pharmacy, with or without insurance.  Between the pharm's, HMO's, hospital conglomerates and the doctors themselves, it will be hard for any President to regulate these companies, esp. when their political survival depends on their campaign contributions.

We have the same issues with big oil, the banks, and so on.  How can Exxon and Chevron post all-time high quarterly profits ($40B in 3 months???), as we spiral into a recession? 

Personally, I don't think Medicare fraud has been a big factor in our record-setting deficits, shaky economy and skyrocketing health care costs, but that's just me.

I know this isn't a political forum, so pardon me for getting off-topic and probably offending other people's political opinions.  I'm done venting....thanks!

Posted 2/4/2008 9:25 PM (GMT 0)

Thanks everyone for your replies! 

Tomorrow when I go see my GI, I am going to take the paperwork in I received from the Prometheus Laboratories and ask her if she can have her office write a letter to my insurance regarding why I needed the bloodtest--thanks Mary S! 

Posted 2/4/2008 11:19 PM (GMT 0)
I hope you can get good results in getting the Prometheus paid for. I know many a Parent from the Parents of IBDers Board have had to do battle with their Insurance Companies over paying for Prometheus. Because it is a test sent out to a different State many Insurances claim it is out-of-network. Many have fought & won though!!
Your GI's office should be helpful in being your advocate.
Posted 2/5/2008 1:58 AM (GMT 0)
My insurance paid no problem and I have a typical HMO plan.
Posted 2/5/2008 2:05 AM (GMT 0)
Ok I love the VA, as much as a pain in the rear as it can be sometimes...I am still very glad I have it.
Posted 2/5/2008 3:07 PM (GMT 0)
I'm very lucky that I have a job that has wonderful health insurance. The other day I was on the website about my medical claims. I was diagnosed with CD about a year and a half ago. I checked on how much my medical bills was since then. 2 hospitalizations, one surgery and multiple specialists because of complications from 6-MP. The hospital had to call in everyone to try to figure out what was wrong with me. I should have been on "House". In the last 1½ years I have accumulated almost a quarter of a million dollars in medical expenses. That doesn't include medication. I have only paid $182 for hospitalizations and $20 co-pay per office visit.

I've been at my job for over 30 years and am able to retire if I wanted to. But I can't because I'm too young to get medicaid. So I might not be able to retire but luckily I love my job. Just hate to go to work everyday. Sometimes I would just like to get rest on my down days instead of going to work. Makes it rough to have to work with this dang disease.
Posted 2/5/2008 5:34 PM (GMT 0)

I had a Prometheus test done and was presented with the same situation.  My Gastro doc was very helpful.  He stepped up to the plate and lobbied the insurance company for me.  Keep at it.  Good luck.

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