The Cost ($) of Crohn's

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Mehita

Mehita

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Nov 12, 2011
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The hospital bills from DS's emergency room visit, hospital stays and resection surgery are finally starting to come in. Talk about sticker shock! My face must have said it all because my younger son looked up from his lunch and asked, "Mommy, do you need 911?"

We hit our insurance deductible on January 3rd. Yikes!

Pentasa used to cost us $400/mo until we switched to mail order. Ensure Plus runs about $70/mo even with coupons. Toss in other occasional meds like Zofran and Miralax, vitamins, probiotics, and in our case, gluten free foods and it all really adds up.

How do you all manage "financing" Crohn's?
 
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We've been lucky - I have a great insurance plan so it covers 100% of the remicade and a local medical agency has covered his EN formula. Supplements, etc. are our cost. As we sometimes have longer wait times for tests, etc. here, I did take Stephen to the U.S. for his last MRE (I didn't want to wait four months to decide on a treatment!!), that cost me $1500. Hopefully, test costs will be far and few between! :eek:

But, as Stephen is older, I do worry about HIM covering the cost eventually. While he is in school (university), he will be under my insurance but, once school ends, I'm not sure what happens... :(
 
Thank God for good insurance!! When my son was in the hospital last August for 10 days, it was just over $78,000, including hospital charges, surgery, and doctor visits. We only had a $200 copay. We have a different insurance now and would owe about $500 for the same admission.

Lialda is covered at $30 for a 3 month supply. VSL#3 is around $55 every 3 months. Things like vitamin D, fish oil, and multivitamin I don't really keep up with.

Remicade is around $12,000 every 8 weeks. Insurance covers that in full.
 
I know what you mean, After I retired they changed my insurance coverage and now I have to pay (copays) about $15,000 a year and that doesn't inc. food, ensure and what not. The money that I save for retierment is now going to crohns since I was DX when I was 61 years old.
I hope they do something about the cost of insurance in the USA.
 
At this point, I'm praising God that I changed jobs last spring for better family medical insurance. Jaedyn has qualified for a supplementary medicaid program so far due to some disabilities caused by a seizure disorder. I don't think she'll qualify any longer due to her seizure disorder as she has been off her meds and doing well since last August. I'm hoping they'll continue to cover her due to her disabilities secondary to her Crohn's...that renewal is being processed now. It has covered everything her regular insurance and my work benefits don't cover. (I work for the local hospital and they cover her labs and radiology 100% when it is done there.)
 
I can't even begin to imagine the burden that cost adds to your lives. Even if much of it is covered many's the time that achieving the actual coverage is fraught with so much red tape and hoops to jump through. :(

My heart goes out to you. :heart:

Dusty. xxx
 
I have a 5k deductable so I owe that to the hospital for my colonoscopy and part of my surgery, which cost 90k last year. Now that my deductable has rolled back over I now owe $360 for some blood tests, another 300 for more blood tests just the other day. The Gi wants to do another colonoscopy that will cost me 2-3k I am sure. The ONLY saving grace is that I have excellent prescription coverage that will even cover the Humira that my GI wants to start. Still, the cost of just staying well will eventually drive me into the poor house. It will not get any better when Obama Care starts, my company is planning on dropping my coverage so there goes my great prescription coverage. I am plenty scared to tell you the truth.
 
Tesscorm the same has been on my mind. The ins we have right now is really great but I worry about C and his ability to cover what ins doesn't in the future. I'm also keen on him being able to to get insurance through employment instead of having to access the marketplace policies that will be set up in each state in accordance with the Affordable Healthcare Act. I worry that the premiums through employer policies will be too high for someone just starting out after college.
 
And someone correct me if I'm wrong, but our kids will likely never qualify for supplemental life insurance outside of what an employer might offer?

When I asked our GI to have genetic testing for Celiac done on my other son, he said not to do it because if it came back positive (for anything) he'd never be able to get insured as an adult. He'd be considered high risk for developing whatever he tested pos for.

Maybe we can just send all our kids to live with Dusty? ;)
 
Yes, we are very strapped financially -- we ended up owning around 4,000 for our scope last year. We are looking at another scope this year and maybe an MRE, which I understand from our GI cost even more. And we are only paying 20%! I can't imagine if we needed more than one scope a year ever -- we could get into the $10,000+ range very quickly. I HATE health insurance!!
 
My thoughts are with youmallmin the USA. I cannot imagine how I would feel if I had to fund my treatment. Cancer 2010 dx crohns 2010

Just going back and forth to the hospital costs enough.

So many test and tablets it must have cost a fortune.

Reminisce
Pentasa
Prendisole
Adcal

Previously

Chemotherapy
Radiotherapy
Heart tests
Bone test
Endless scans.
 
I will never complain about the small amount that we have to pay for again. Everything that is done in the hospital and all doctors visits are 100% covered by our national medicare and, in the province I live in, all the costs of EN (formula and equipment) are covered by a provincial program. We do pay for drugs and we did have to pay for psychology appointments at a private clinic and the physiotherapist.
At the time my son was diagnosed we had extended medical insurance that would cover 80% of drugs and visits to things like psychologists and physios but we lost it due to job changes after about 3 months. Thankfully, we are on an extended medical plan again. I can't even imagine having to pay out of pocket for scopes, MRIs and the like.
 
Insurance here is very good- 100% covered for everything after deductible ( which is not much is met)
That includes remicade and formula.
Drugs are another story.......
Plus a pill cam insurance will not cover but gi wants so....
 
Hi all - yes the cost is enourmous. My son's Pentasa runs us $225/mo but his 6-MP is only $5/mo..go figure. The ins stopped covering VSL so it was going to be $300/mo so we had to use something else. The vitamins are costly.

For the GF food, I use Pamela's mix and make my own bread, pancakes, rolls, etc. and that save a ton. I order it on Amazon.

Also - our 401k will allow us to fax or mail them medical bills and they will send us a check from our 401k funds without it being a loan and with zero interest or fees. Check on yours and see if they offer that. We use it when we have a big bill, like for a colonoscopy which will usually cost us $1000.

Hugs
 
So pleased we are UK based, feel sorry for everybody that has to pay, doesnt seem fair to me :-(
 
Jack's first scopes (upper/lower) cost $5000 (for just scopes not everything else like anesthia) and we had double coverage at the time and he was covered under both mine and hubby's insurance so we did not pay anything. The company my hubby worked for went bankrupt and closed the doors the day before scopes, luckily they had paid the insurance premium so we were still good for a month after.
This time scopes (upper/lower) were $3000 the difference the GI practice is now owned by the hospital where scopes are done. We just got the bill for our portion and were prepared for $1000 + but it was only $232 (again this is only for scopes portion).

WOW Gingermom, I won't complain anymore about the $80 copay for Pentasa we had.

LDN is not covered but we pay $40/month for that.

We pay 20% for supplements or $78/case which now that he is at 6 a day last 4 days instead of 3. So it was $780 a month and now we can drop to about $625.

When my hubby's insurance went bye-bye and we had to buy private insurance, which has a $5k deductible, I shopped around to get the best price on his Imuran. Walgreens was $151/month with no insurance, Costco was $28 a month with no insurance.

With labs/tests between the 2 of them I joke with the GI's all the time we should have a preferred customer card at the hospital, maybe we could get 2 for 1 Scopes :)
 
Medical bills make me want to cry! I seriously dread checking my mail and can only bring myself to do it every 2 weeks or so. Checked it today - about $1500 in medical bills! That's the scopes, MRI, and numerous labs. The stool samples alone were over $500! That doesn't even count the latest C-Diff test which will be about $250 when it comes in. Doesn't count the ER visit either. Or the Sitz X-ray.

Florastor is $78/month, Miralax is $12/month, Ex-lax about $20/month, $45 for every GI co-pay.....
 
We were spending a lot OOP even with good insurance last year...and Isabelle hit her $500 prescription deductible in 2.5 months on one drug alone this year.

Someone once advised me to apply for social security disability...I have heard that it isn't income dependent, Crohns/UC are disabilities. It tends to get rejected the first go round but it can be appealed and is worth looking into!
 
It is so heartbreaking not only to see what you are confronted with in the way of bills but that someone is making money hand over fist when it comes to the charging of these goods and services. :(:(:(

I am not privy to much of what goods and services cost here as many are 'free' but of those that I have had insight into the difference in cost in what we pay to the US is staggering. For example, I did not pay for Matt's scopes but I know for his endoscopy and colonoscopy, including anaesthetic etc, full price was $795.00.

Dusty. :heart:
 
Until reading all these posts, I didn't realize how much wasn't covered in the U.S. :eek:

In Canada, without insurance, all your doctor apptmts, hospital stays and testing are still covered. My own experience is that private insurance (employee plans) usually cover 80-100% of medications. Without private insurance, there is a provincial plan that covers medications after a deductible. I haven't had to use this but I have been told the deductible can be a bit high - deductible is 6% of household income, which would include any relative living in the home - parents, children, siblings, etc. :(

Since Stephen was diagnosed, medical care has obviously taken on a new significance for me. My hope/plan is to leave some sort of 'trust' that can to be used for medical necessities for my children, grandchildren, etc. Certainly won't be able to leave a fortune :lol: (wish I could! :lol:) but, if they are ever facing medical worries and needs, I hope to be able to alleviate at least some of the financial worries. I can't imagine anything worse than having a family member need a medication or treatment and not be able to provide it because of financial limitations!

I have very little knowledge of it but hope the new medicare plans for the U.S. (Obamacare) helps alleviate some of the burden!

:ghug:
 
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It depends what state you live in, in the US. We live in Michigan and IBD is covered under the Childrens Special Health Care Medicaid by the state of Michigan. It covers everything including her VSL#3, co-pays, Nutritional shakes, prescriptions anything related to IBD or her ileal pouch. We just need a pre-auth and to pay for it which is about $800 a year. Totally worth it. If we didn't have it Rowans bills for all the surgeries and meds if not covered would be in the millions. The only good thing about living in Michigan is this secondary insurance. I think everyone should have this option.
 
There can be differences in the care/assistance provided here as well, depending on where you live (municipality)... a local (city) medical agency covers the cost for Stephen's formula and provides a monthly visit by a nurse. Now we certainly don't need the nurse at this point but, to get the formula, we must take the nurse! :ybatty: My dad, same city, still has daily visits by a nurse although 'daily' really isn't necessary and my mom has even said that they would be fine with 'less' care. Yet, 20 minutes away but different 'city', another family member recently had a stroke, is home now but not able to walk on his own, can't manage stairs, bathtub, etc. and has special feeding needs yet they don't qualify for ANY assistance!!! I understand it's all dependent on funding, etc. but frustrating to see how money is sometimes spent unnecessarily and then those with needs must go without!!
 
I just started looking over my hospital bills and here is the breakdown on what my care has cost so far with insurance. I have a 10k deductable to I owe 10k of this.:

Resection Surgery/illestomy reversal=$90k
Illeostomy supplies for 3 months=$5k
Medications for the last year=$7k
Now granted I "only" owe 10k out of that but if I would have been unfortunate enough not to have insurance I would be filing bancrupcy right now. We need good national healthcare where everyone helps everyone else in the way of taxes and spead the responsibilty. With the new laws starting in 2014, I will lose my work insurance, pay 30-50 % more in Minnesota and bascally have LESS coverage than I had before I think. I am not am expert in the new laws but I know my company is dropping my insurance as fast as they can when the law goes into effect. Anyway, just my 2 cents
 
A 10,000$ deductible, wow that is so high, I can't imagine! I have a friend who chose a higher deductible since they were young and in good health. They were then dx'ed with MS and really struggled until the yearly ins. enrollment date.

There are rumors swirling through my husband's company that they may do the same...very scary.
 
Just out of curiosity... why are companies cancelling their insurance policies? Is it because of the new healthcare changes? Aren't there any regulations that protect people and force companies to provide insurance (ie companies with more than a certain number of employees?)? If not, what does that mean? People will have to purchase their own insurance? I thought the new healthcare system was to provide greater accessibility to healthcare, if people have to pay for their own insurance, how is that better?

Maybe I'm totally missing the point of the healthcare changes!??? :redface:
 
Each state will have marketplaces in which individuals can purchase insurance. Companies have to pay a fine per individual if they choose to no longer provide insurance, a lot of large companies may opt to pay the fine as it will be less than the the increases they may have to pay. At this time, the "opting" out is speculation and rumor in at many of the larger corp.
 
I should edit to add that the marketplaces will be set up as exchanges and there will be premium credits distributed according to the individual/families relation to the Federal Poverty Level, so those living between 100% to 400% of the FPL will receive these credits. The premium credits connected to the second lowest cost silver plan. There are also cost sharing subsidies that are related to the 100% - 400% of FPL.

Our family wouldn't qualify for the premium credits.
 
Thanks :)

If people have to pay their own insurance, won't that be a huge financial burden to people whose companies have always covered them?

As I've always worked for large companies, I've always had employer insurance so I don't know how much it would cost to purchase private insurance here. I pay tax on the value/cost of my employer insurance but I think the amount is very small compared to the actual cost of a policy. Also, our insurance is only necessary to cover the costs of prescriptions (which, as we all know, can be huge!), hospital room upgrades, dental and other miscellaneous. Our doctor visits, tests, hospital stays, surgeries, etc. are all covered by the govt. BUT, we do have much longer wait times here for specialist apptmts, tests, etc. (Do you remember Emily's tiredness and pinky finger issue last summer, leading to the rheumy, tests, etc.? When nothing came of that, GP referred her to a hematologist to follow up... apptmt is NOW, in two weeks! :yfaint: Em and I aren't even sure we remember the exact problem anymore! :lol:)... so, we do sometimes have loooong waits!
 
Our family wouldn't qualify for the premium credits.
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That's what I would expect... that a lot of people will get caught 'in the middle'!! I would expect that will be a really tough burden for a lot of people to suddenly take on! :(
 
I'm really not sure how any of it will work and until it is implemented I don't think there is any way of knowing. The cost sharing subsidies may help those that make above the percentages for premium credits. I worry more about level of coverage and making sure we retain that.
 
When is it all being implemented? I hope it actually helps those who have needs for medical care!!!

Until you have to deal with a chronic illness, you really have no idea how much of an impact medical costs have on peoples' lives! (At least, I didn't!) :(
 
It is going to be put into action in stages, like some aspects were made active last year more this year and even more in 2014.

Our healthcare system is broken, as you can tell with the great differences in premiums, coverage and deductables. This will be a huge help for those with no medical coverage, I hope.

The insurance coverage aspects of C's chronic illness concern me greatly not for the here and now so much but for him in the future.
 
So far the financial cost of Crohn's to our family:

$75,000 for 6 days in the hospital. Our part can't exceed $6,500, thankfully.
Several hundred for prescription meds, which will be cheaper when ordered by mail. Should be around $50 per month?

Son needs 8 Peptamen a day and at $8 each, that's $64 per day or about $2,000 per month. They're telling me 2 or 3 months is normal. So far our insurance won't pay a penny of it, but we are working on them.

I'm a SAHM, but if I had had a job, I'm sure that I would have been fired, as I have had to spend so much time with and taking care of my son.

There have been some miscellaneous costs that probably add up to around a thousand dollars...So, so far $8,000 IF our insurance changes their mind and pays for the Peptamen, and an additional $4,000 - $6,000 if they don't.

There have been times when our family could not have afforded this, but luckily we are able to now!
 
Amy2, Did you get a letter from GI about it being a medical necessity? We were finally able to get it covered at 80% so we pay $3.26/bottle or $78.20 per case - $782/month. Took a lot of phone calls from the doctors office, myself, even the medical supply place.
 
Amy2 - good luck!!! with getting the Peptamin covered. Luckily a regional agency covers my son's formula as our insurance wouldn't (they claim it's only a nutritional supplement, like a multi-vitamin!)

Clash - yes, I worry about Stephen's future too! If he's still on a med as expensive as remicade, he'll have to look for a job with a large company (greater chance that their insurance will be extensive and all-encompassing!). Nothing wrong with a larger company but hate that he'll have that limitation. And, even then there's still no guarantee that all will be covered (ie currently same policy = formula, no; remicade, yes). And, then just the extra miscellaneous expenses when you are just starting work, at a lower salary... supplements, vitamins, etc.
 
Amy
You need to look at your insurance durable medical equipment clause
Most cover infusion supplies ( aka formula)
But not prescription formula .
You also need a letter from your Gi .
Our insurance covers DS peptamen jr at 100%
Last plan covered it at 90%
Good luck
 
Amy2 said:
So far the financial cost of Crohn's to our family:

$75,000 for 6 days in the hospital. Our part can't exceed $6,500, thankfully.
Several hundred for prescription meds, which will be cheaper when ordered by mail. Should be around $50 per month?

Son needs 8 Peptamen a day and at $8 each, that's $64 per day or about $2,000 per month. They're telling me 2 or 3 months is normal. So far our insurance won't pay a penny of it, but we are working on them.

I'm a SAHM, but if I had had a job, I'm sure that I would have been fired, as I have had to spend so much time with and taking care of my son.

There have been some miscellaneous costs that probably add up to around a thousand dollars...So, so far $8,000 IF our insurance changes their mind and pays for the Peptamen, and an additional $4,000 - $6,000 if they don't.

There have been times when our family could not have afforded this, but luckily we are able to now!
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Have you looked into...
http://www.colorado.gov/cs/Satellite/CDPHE-PSD/CBON/1251617590646
 
I LOVE Michigan, and wish I could go back!!!

It is expensive here but the care is excellent and we get treatment quick. I have noticed in Europe and Canada that it can take quite a while sometimes to get tests/meds/appointments.

Sounds like Australia is the place to go, best of both world's!!! You have room for us all Dusty???:D
 
Just heard United Health Group told their brokers that premiums will be going uo 114% when Obama Care kicks in fully.
 
Really can't understand why some test are so much dearer in America.

Faecal calprotectin is not approve test in Australia, so there is not cover on Medicare or private insurance. We pay $40 at our lab, the other lab quoted $80.

MRI with contrast again this is not an approved test, so no cover, cost $340.

Scope both ways this was covered by a private health insurance, we paid the deductible of $400, the insurer was billed $895.

Aza I paid $37.50 for 100 x 50mg, same price for 100 x 25mg.

Pred 60 x 5mg $5.95

Ensure by the tin $29. (Add water I think 18 serves per tin)

Private GI $120 per visit get $60 back from Medicare.

My private health cover is $2500 per year for family plan.
 
:lol: Plenty of room! Anyway, I can always stick you out on the farm with the sheep if beds are tight...hmmmm...natural and organic woollen underlays! :biggrin:

There surely is good and bad in every system, ours included, but I wouldn't want to give up universal healthcare. I am more than happy for my taxes to be spent in areas such as this as it is one of those essentials in life that I believe everyone has fundamental right to access regardless of their financial status.

As a family we also have private health insurance, I like it as a added option should it be needed but we have not had to draw on it as yet. The way it works would be much like that in the US or Canada but the premiums are not paid through an employer. I could have gone private with Matt but I did not see the point of paying deductibles etc when accessing the public system was free and the time frame would have been no different.

Dusty. :)
 
Catherine the prices for medical services-hospital or doctor office as well as drug, lab and testing prices aren't capped by the government. At this time, only Medicare/medicaid has capped mandatory capped prices. Private insurance companies can negotiate prices with hospitals and such to lower the prices but their discount is no where near as low as the caps set for Medicare/medicaid.

I don't think any caps have been written in for hospitals, pharma etc with the new healthcare act(except what exists only for the Govt sponsored ins.) But I may be wrong about this.

I have no problem with any program that works to provide everyone with healthcare(though this one won't) I just don't want to be forced into a plan that doesn't meet the level of care our plan now provides.
 
Also, Dusty is right every program has it's weakness or faults but I read an article about the system, I think it was Singapore, has and it seems they are on to something. If I come across it again I'll post it.

Let me edit to add link below...in terms of efficiency, life expectancy, and infant mortality rate.

The Singapore government spent only 1.3 percent of GDP on healthcare in 2002, whereas the combined public and private expenditure on healthcare amounted to a low 4.3 percent of GDP. By contrast, the United States spent 14.6 percent of its GDP on healthcare that year, up from 7 percent in 1970... Yet, indicators such as infant mortality rates or years of average healthy life expectancy are slightly more favorable in Singapore than in the United States... It is true that such indicators are also related to the overall living environment and not only to healthcare spending. Nonetheless, international experts rank Singapore's healthcare system among the most successful in the world in terms of cost-effectiveness and community health results.

http://econlog.econlib.org/archives/2008/01/singapores_heal.html
 
Our prices for medication, procedures, doctors appointments are not capped by the government either.

Medicare we all paid a levy for with our taxes.

For the doctor appointments there is something called a schedule fee which is the amount Medicare will paid the doctor. The doctor can charge the patient whatever they like this is called the gap.

For approved blood tests there is a schedule fee set by Medicare, but believe most if not all labs choice to bulk bill which means they only charge the patients what Medicare will pay them, so there is no charges to the patient.

If you are a public patient in a public hospital all treatment is free.

Treatment in public er is also free.

The cost of aza varies between chemists.
 
I'm sure it has it's downside as well though, just came by the article or one similar one day while researching and found it really interesting.
 
In the US do insurance companies promote preventative health programs, like cancer screenings?
 
Are you talking about, like community programs that provide mammograms, or something sponsored by the government in some way?

Since we have private insurance, I'm not entirely certain how those programs work. Testings for some types of cancer is set by age so if you have private insurance you schedule say a colonoscopy at 50. Due to GI issues I had my first colonoscopy at 36 and now will have one every 5 years. Or if there is a history of breast cancer you may start mammograms at age 30. I started mammograms at 28. You can also opt for BRCA testing.

But there are community programs that get out the word and have sponosored events for mammos and such.

Edit to add: there are certain ages for all the screening but having a history of the certain cancers moves the screenings up alot of the time.
 
Free programs that the government sponsors. Does the government do that or do insurance companies promote that sort of thing?
 
There is this:

(government sponsored)CDC's National Breast and Cervical Cancer Early Detection Program (NBCCEDP) provides access to breast and cervical cancer screening services to underserved women in all 50 states, the District of Columbia, 5 U.S. territories, and 11 tribes.

And then state programs like this:

The Kentucky Colon Cancer Screening Program (KCCSP) is a population-based, public health initiative consisting of a network of state, regional and local health professionals whose mission is to reduce new cases of colon cancer as well as the disability and death associated with colon cancer.

And community/church programs like this:

The Methodist Prostate Screening and Awareness Program
The PSAP reaches out to men where they gather – at their churches, barbershops, and family reunions in the Dallas, Texas area.

Hospitals, community organizations, private corps also sponsor health screenings, cancer screenings and such.
 
Tesscorm said:
Amy2 - good luck!!! with getting the Peptamin covered. Luckily a regional agency covers my son's formula as our insurance wouldn't (they claim it's only a nutritional supplement, like a multi-vitamin!)

When my son was on Peptamin Jr. years ago, our insurance wouldn't cover it. They said it was a supplement. He was getting it through a GJ Tube at the time. I asked the ins rep what it was supplementing, his saliva? :ybatty: Got no response to that question. Back when my son was on Peptamin Jr. it was a fairly new formula and the cost was more than my mortgage. :yrolleyes:
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Dusty, in the last few years there have been a few upheavals with cancer screening, govt panels or organizations have come out with recommendations and such like mammograms shouldn't be started until 50 instead of 40 and other type statements. The medical community and health organizations went into an uproar and some of the recommendations the Govt panel backed down from after the uproar. I think the fear was with the recommendations Medicare/medicaid and private insurance agencies could deny coverage until the new recommended age. I'm uncertain on all the specifics just remember all the talk when it was announced and hoopla that followed.
 
Keep in mind that many of the "free screenings etc..." are not free or offered to the middle class. We have to suffer the cost of outrageous medical bills etc..
 
Yep, Naturelover, that is why I don't really know about those programs, since I have private insurance all my screening are set up through my GP, OBGYN etc.

Most of these programs are aimed at those that don't have insurance or are on types of governmental assistance, healthcare or otherwise.
 
My insurance has a program called "wellness" and you can opt in and pay less on your premiums and they provide while not free extremely low cost screenings. I have a yearly "screening" for $25 that basically just check's blood presssure, cholesterol, glucose and another $25 for mamogram.
 
I second Naturelover. A lot of the "free screenings" aren't free unless you are low income, do not have insurance or have some other hardship. While I'm strongly encouraged to get a breast cancer screening now that I'm of age, my insurance will only pay for it if we've hit our deductible for the year and then we still pay 30%. Admittedly, I haven't had one for three years.

For those who've been comparing costs, here are our numbers in MN at a level 1 hospital. We pay the first $6,000 before insurance kicks in and pays 70%. These were the charges before insurance.

ER visit and 3 day hospital stay - $12,900
Small bowel resection surgeon - $3,000
Small bowel resection anesthesia nurse -$1,600
Office visit with GI - $228
Ave Crohns lab work - $200
Ave Celiac lab work - $500
MRE - $1,200
Hospital charges related to MRE (??) - $4,000

Still don't have the post-surgery 6 day hospital stay bill :(. I'm guessing it will be close to $35,000.

What I love is that all the bills come with a date of service and dollar amount due. No details unless I call and request an itemized bill.

Time Magazine had a very interesting article recently on the cost of health care in America called "The Bitter Pill". I can't get the link to work, but you can probably find it on Google.
 
My insurance does a free physical and that is it. The catch is that if they find something wrong, it is no longer covered and then you get to pay for whatever they found. That is what happened to me, The free physical cost me 5k for a coloscopy, 10k by the time it was all over.
 
superzeeman, one of my family members had an insurance policy that did the exact opposite. It would cover a screening such a a mammo, PSA, colonoscopy(at 90%) but would not cover a physical...so weird how they all differ.
 
As much as I get frustrated sometimes with the wait times, I am ever so grateful to have universal healthcare and after my dad's accident, have always been an advocate.

Although, I have gotten a colonscopy here north of toronto in 6 days, and 100% covered by government. With my imployer, all medications are 100% covered never had to pay a dime and even covers I believe $1000 or more of naturopath and you get the money back later, just save the receipts for things like that or massages.

It's sad to say I don't even look at the actual "cost" of the drugs,just taking for granted free and never had to pay a dime, but I will definitely be more apprecitive now reading all these posts and realizing the reality other places.

My dad had an accident 26 years ago as hydro linesman and was crushed between 2 transformers and has over 280 surgeries to date and is on so many pills each day an absolute crazy amount. But they basically told us if we lived in the states, we would have owed millions upon millions even if had insurance and they would have dropped him after so long.

So again although definitely not a perfect system and longer wait times but am thankful that I don't have to really worry about money when it comes to my health.
 
My son stayed 6 days at Children's Hospital in Aurora, CO and it was $75,000 just for the room. I haven't seen any of the other bills, yet, but once we hit our $6,500 deductable, everything is free, with the exception of meds. So, our entire family has free healthcare for the rest of the year, now. And I gotta admit I'm pretty excited to schedule my free hemorrhoid surgery. ;)

And my son's doctor is going to write a letter to our insurance company about the Peptamen. He's a WONDERFUL doctor. So, we'll see.
 
Amy, who does your son see? We also are at Children's - we see Dr. Brumbaugh, and have for the last 3 years.
 
Met with a financial counselor at our children's hospital this week and set up a payment plan. They are allowing me to pay $50/month no matter how large the debt becomes. Love that place!
 
I changed GI docs last month and just saw the bill. I now owe $465 just to see her and have a consultation. She put me on methtrexate and I have had 3 blood tests at $265 each. So I am going to have to somehow pay that all out of pocket. And I am not done having blood tests either.
 
Last month, our AMEX bill was twice as big as it normally is. Retail therapy. :(

Thankfully, we can still pay it of in full.
 
Crohn's is expensive, indeed. Here in Europe the insurance takes care of all the costs, so it doesn't cost me anything, but from my time living in the US I know what you mean.

Just some food for thought when it comes to Pentasa: if it helps, great, but if it doesn't keep someone in remission, it's costs are not acceptable, the money is better used for lots of other things that help with remission, from the right food to sport etc.

Currently I am probably one of the cheapest Crohn's patients out there:

Azathioprine (generics) costs about 25 euros for a 100 tab 50mg per tab pack, which lasts a month.
Tardyferron costs 5 euros for 30 tabs 80mg, that's 10 euros per month
Loesferron (another iron supplement) costs about 10 euros for 30 solvable tabs, lasts also a month
Multivitamins I take cost 4 euros for a pack that last a month
Vit D3 costs 6 euros for a pack that lasts 3 months
Total costs for meds per month: 50 euros

Plus a blood test every 8 weeks for about 120 euros, that's another 60 euros per month

A doctor's appointment ever half year for a few minutes... Negligible.

I pay the maximum amount in monthly insurance fees (based on income) which is nearly 1000 euros per month.

What really costs a lot are hospital stays, I had iron deficiency problems since 2007 and was in hospital for 3 times due to that. It's insane, but a two day, one night stay with 3 EPO infusions costs beyond 3000 euros...
 
Today Liam saw a Pediatric GI who isn't on our insurance network. We will have to see if Insurance company will reimburse any of the cost. Costs in USD were:

Consultation $135
Complete Blood Count 40
Amylase Blood Test 27
Liver Function Tests 95
Celiac Tests 216
Vitamin D level 108
2 x stool tests 108

Total $735

My impression is that costs here are fairly reasonable compared to elsewhere. But I can see how people very quickly rack up huge bills if they don't have insurance picking up the tab. Fingers crossed that our insurance company will reimburse at least some of this.
 
Mehita said:
We hit our insurance deductible on January 3rd. Yikes!
Click to expand...
WOW January 3rd, that has to be a record!
My deductible is $400 after that the hospital pays 80% with max out of pocket being $1600. Compared to some people, its great but to me, I am 24 a thousand miles from home with out a job. Thats a lot to be expected of me. I did meet my max out of pocket on March 25th (surgery will do that! ) so I pretty much get free health care for the rest of the year as long as it is in network.
2 years ago I had a major surgery, they had to remove my belly button. If any one wants to know that procedure is called an umbilectomey. I know my surgeon ALONE got 14k just for that procedure, not including the rest of the surgery. All together my surgeon received somewhere around 75k ( I don't remember exactly and I have no idea where the bill is, I know I saved it though because my jaw dropped) As far as the hospital stay and what the hospital charged, I have no idea.
 
It makes me pleased we live in the UK, I can't imagine the worry of having to make sure you have enough insurance to pay for treatment. The amount of meds Josh is on at the moment would cripple me if I had to pay for them. I really feel for you all.
 
Just got the anesthesia bill yesterday from DS's resection in January. It cost $6000 and after insurance, we have to pay $1500 of it.

Follow up question:

Does the cost of Crohn's ever influence your decisions on treatment?

In our case, thus far no. I have questioned the Pentasa since its really expensive, but have yet to follow through on changing to something else.
 
Pentasa is way cheaper if ordered through Express Scrips. For us, it went from like $300 or $400 a month to like $80 a month.

We've not yet had to let cost influence our son's care, but if he needs Peptamen for long term maintenance, that could change...
 
My son did a 23 hour stay in children's colorado for his "teaching" on EN..I just got hit wtih a partial bill of $1100 and more to come. This is on top of the $1250 I got hit for labs.. and my insurance, after MUCH debate, agreed to "pay for" the supplies for EN but not the formula.. however, I just found out, after receiving a $100 bill (and that is just for the first few days) that I am responsible for 20%!! So they are "paying", yet I have to pay 20% of what they approved PLUS ALL the formula!

I'm seeing a recruiter today to start a job search.. I love my flexibility that I currently have but need insurance that covers my family's needs, especially as I am a single mom and ex doesn't pay a penny, so it's all on me!
 
If it costs $1,100 to learn to use the feeding tube, wouldn't that be another insentive to drink it? They were so against my son drinking it and I don't understand why.

We're on round 2 to try and get our son's Peptamen at least partially paid for. I found out my husband's company has it's head office in Arizona, where (it is my understanding) that it is illegal for insurance companies not to pay at least 50% of the cost. His company is self-insured. We don't live in AZ, but it might sway them. Our insurance is good, it even pays for dental implants and 1/3 of the cost of braces...I can't believe they won't pay for Peptamen.
 
Amy, My son won't drink it.. he's a very picky eater, etc and doesn't have hte appetite to drink these.. so not an option. He's doing great on the EN, and at this point, we already had our hospital visit so..the $1100 is a sunk cost.. and I just have to go on a payment plan to pay it off..all i can say is that insurance in this country sucks!
 
If your insurance is not covering EN it is typically cheaper to get it directly from the manufacturer .
Since home health places increase the cost of formula so even your 10-20%
Is close to real price without coverage when bought directly.
Nestlé gives a discount for auto reorder - and shipping is free
Good luck
 
LJS said:
Amy, My son won't drink it.. he's a very picky eater, etc and doesn't have hte appetite to drink these.. so not an option. He's doing great on the EN, and at this point, we already had our hospital visit so..the $1100 is a sunk cost.. and I just have to go on a payment plan to pay it off..all i can say is that insurance in this country sucks!
Click to expand...

I definitely understand drinking Peptamen isn't an option for everyone, but my son was HUNGRY, as soon as they put him on steroids and initially began drinking them without a problem. So, I don't know why they pushed for the tube so hard with him. You'd think we'd have at least been told about the added cost of the tube feeding, as they didn't know that our insurance covered the entire cost. Honestly, they seemed pretty surprised that we wanted to continue with the Peptamen after they told us what it costs, after they tormented my son putting his tube in. How many kids do they tube before telling the parents the cost (and that insurance often doesn't pay) for Peptamen?! It's insane.
 
MLP, Insurance is "covering" the supplies. I don't get any formula from the home health company, except for 6 cases that they very kindly donated to me..
 
LJS said:
my issue has been with the insurance company and NOT the hospital/doctors..
Click to expand...

My problem is with the "system". Almost all of the individuals that we have dealt with have been wonderful and given my son excellent care.

The only problem I have with the insurance company is the stance they've taken to not pay for nutritional therapy, no matter the circumstances.
But, I'm hopeful they will come around, eventually.
 
Colonoscopy & Endoscopy on Thursday -- GI's bill $1500.
This had to be paid upfront, not sure if Insurance will reimburse any of it.

Have not seen the hospital costs yet, but our understanding is that this will be able to be directly charged to our Insurance company. Fingers crossed, this works.
 
A couple of weeks ago my son had to go to the emergency room at Mayo Clinic for a non crohns reason. With all the medical bills I had racked up I just cannot afford this addition and I went to the business office to ask if there was anything that they could do. They took a list of my bills and my income and chopped 65% off the debt! They will cover that for future bills until Oct of this year. This gives me breathing room and some hope that I may not go broke trying to pay for these bills.
 
Wow..that is awesome.. mine won't chop off bills but will put me on a payment plan..for the rest of my life!
 
If the hospital put you on a payment plan and isn't charging you interest, they did chop off part of your bill. :)

My mother had zero money sense. When I was born, a wealthy friend loaned her $2,000. She proudly "paid it back" 3 decades later, when she came into some money. I didn't have the heart to tell her that she had not paid it back at all, as $2,000 in 1962 would have been worth much much more in 1992. Probably more like $16,000. :facepalm:
 
I'm probably in the minority here, but I wish that all healthcare was privatized, and not subsidized by the government. I have alot of medical expenses with my son now, I haven't sat down and totaled them, but it's been tight. We have decent insurance, but I think alot of these things are so expensive in part BECAUSE they are subsidized. I realize the medical care in the UK and Australia is free or government provided, but I often wonder if that makes it harder for patients to exercise control over their medical decisions. Also, when things are free, usually people are less choosy and wise about how they spend someone else's money than how they spend their own money. Which would mean, overall, the government is spending ALOT more money on healthcare. Where is the money coming from? Someone is paying for it somewhere, or the program can't be maintained forever. Then there is the pressure the doctors in the system could feel to be careful in how they spend the money. I realize there are pros and cons to both, and I do worry about my son's future once he is no longer on our insurance plan, but I see most of the outrageous prices in the US stemming from the way the gov't subsidizes things, or makes laws that benefit big business and not consumers. I have hearing aids, and they were CRAZY expensive. My husband, who is a computer scientist, looked them over, and said he thought they weren't that expensive to make. But since they are labeled as medical devices, the companies that make them have to be licensed to do so. So the market is artificially low, and those companies are able to charge high prices, and people will pay it because there are few alternatives. Just my take on it. Thus far, I don't think Obamacare has improved anything; if businesses can't afford to offer the insurance because it's too expensive, then they end up dropping insurance altogether. It may just be making the gap between rich and poor larger, and squeezing out the middle class.
 
I really do feel for those of you paying big bucks to keep your kids well. Such an added stress you have to deal with. Our healthcare here in Canada is free (although nothing is really free-we pay higher taxes than you do in the US). Our healthcare is high quality and sustainable (thanks to us taxpayers). Private insurance kicks in for eyeglasses, prescriptions, physio, and such, but so far I've paid less than $10 out of pocket for my son's Crohn's (for prescription costs above what our private ins pays). It doesn't matter what insurance you have or what your income level is, basic healthcare here is a right.

Our docs are careful not to order tests, etc, unless it is warranted. They are audited. That said, sometimes our wait times are longer in Canada, but fortunately that has not been our experience. My son started getting sick at the end of Jan. Bloodwork results came in on a Friday in Feb that showed low hemoglobin. I met with our Family Doc the following Monday who sent me to Emerg at the Children's Hospital that evening. More bloodwork and an ultrasound was done that night, and they were pretty sure it was some form of IBD. An indium scan (nuclear medicine) was done over the following 2 days in the pediactric GI dept, and we had a working diagnosis of Crohn's. 2 weeks later, in early March, an endoscope, colonoscopy, and MRE were done to confirm the diagnosis.

I am very thankful for the care we have received. Our system is not perfect, but I pray we never have to move out of the country!
 
And our insurance has gotten worse over the years, even though my husband's career has done well. It cost a total of $10 to have our 16 year old. That was every doctor visit and the 3 day hospital stay and c-section, everything. We would pay a lot more, now.
 
I had my appointment with my GI and she had been worried about my liver now that I am on methotrexate. She had me doing a blood test EVERY week for a month. When I finally got to talk with her I asked her about the liver tests and she said that they were only 6 points above normal and went up and down. So she said she didn't get worried until the levels reached 100 and I was maybe 49, normal being 40 I think. She cost me 235 bucks per test and she really was not even worried! That burned me. I know she was being careful but my goodness, this came out of my pocket.
 
Good thread. We will all have so many questions next year. I am going to call my husbands employer to make sure they are continuing coverage.

Our deductible is $2300, then pays at 100 percent. We pay about $100 each month for pharmacy.... I had not thought about ordering by mail. Asacol too? We pay $50 copay for those. (usually $350.) What is it by mail?

I was sick to my stomach when we started getting all the bills, but I called the hospital and set up payments. It took all the stress away.

We pay about $350 a month to have insurance coverage, hopefully that wont go up in January.

Also, I heard that our children can be covered under our plans until they are 26-27.
 
Asacol by mail depends on your plan - mail order is typically cheaper.
Our plan does not give us a choice. If we do not order by mail after the first refill
Our prescription plan penalizes and covers less.
 
We'd almost given up, but after speaking to our insurance company one more time today, it looks like they are going to pay 100% of the cost of our son's Peptamen. So, don't give up after the first try! It took us 3 or 4 tries...

Money will be much better spent on son's surprise dream vacation to Jamaica. :)
 
:dance::dance::dance::dance: on coverage.

maybe I am wrong but I thought you child was not drinking peptamen jr. anymore just SCD diet alone or I may be confusing you with someone else.:blush:
 
my little penguin said:
:dance::dance::dance::dance: on coverage.

maybe I am wrong but I thought you child was not drinking peptamen jr. anymore just SCD diet alone or I may be confusing you with someone else.:blush:
Click to expand...

No, you're right. My son is on the SCD now, but they are going to reimberse us for what we've already spent. I think it's about 4K. :)
 

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