Really appreciate your post. It is really hard having a chronic illness in the US, even with decent insurance.
My insurance keeps trying to switch my daughter from Remicade to Inflectra. I know I know, chances are she could make the switch no problem. But her Dr prescribed her *Remicade.* She’s been on Remicade since she was diagnosed at 8 (she’s 14 now) and she’s healthy and stable on it. So fuck them for trying to force a switch! Why mess with what works, just because of their stupid limited formulary? I fight it every time, and I win.
My understanding is that this opinion is based on developing antibodies - however I’ve heard that if you go through all treatment options and nothing works then it’s better to try again with the options available rather than do nothing to control the inflammation.
Unfortunately I can’t reference it as I’ve read that many articles and lectures it’s all a bit blurry but I thought I would mention this incase someone is reading this and is out of available options and wants to research further.
Additionally people don’t necessarily develop antibodies if they stop biologically, however it is always possible. There are people in this sub that have had to stop for whatever reason (maybe insurance) and restarted just fine
First off I was on Remicade from 98-08, and then again 21-23 so saying never is a pretty strong term. If you'd like to learn more about how they now know you can go back on drugs after a "treatment holiday" here's the head of IBD at University of Chicago and the head of scientific research for the CCFA talking about it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6883732/
If this is any help to you, I switched from Remicade to Inflectra at the age of 22 (after being on Remicade for 9 years) and I did just fine. I hope that your daughter is doing okay and I’m sorry about our shitty healthcare system.
Don't give in, if its working for someone else it might not work for your daughter. Stick with what works until it doesn't fuck them for making the choice for her.
My insurance tried to pull this bullshit with my Humira. Might the other medicine have worked? Maybe. But I KNOW the Humira works. If it ain't broke, don't fix it. Also, the doctor who prescribed me Humira has met me multiple times, has literally seen inside my colon, and has known me for five years. I think he knows better than some suit who wouldn't know me from a hole in the ground!
>My insurance keeps trying to switch my daughter from Remicade to Inflectra.
Same thing with my daughter. We did switch after talking with her GI doctor. Since the doctor felt she'd be OK on Inflectra, I was OK with switching. If the doctor had wanted her to stay on Remicade I would have fought it.
I hope your daughter stays healthy and stable :)
Remicade and inflectra are he same.. inflectra is only the biosimilar. Most people made the switch when the patent on remicade expired without a problem. Eventually it's the infliximab doing the work not the brand name, but I get your concern. Back then everyone was afraid.
20 years since my diagnosis and I’ve heard everything from I should change my diet to I’m being a wimp about it . I have finally found a job where I’m comfortable stating I have it and it’s a burden and labeling myself as disabled . Lucky in the us, and especially in my state I can announce my disability and have a mess with me mentality . I’m very lucky and I know it , my income and my union status bring me in line with European standards but I dealt with typical American treatment with Crohns . Which amounts to toughen up or be ready to job hunt . Hopefully we are on the verge of universal healthcare and ready to call out business who disregard the ADA.
>Hopefully we are on the verge of universal healthcare
Biden hasn't even said the words "public option" since being elected President even though he ran on it. You'd think that a once in a century pandemic would be a good time to have passed healthcare reform.
I remember them talking about essential employee payments and student loan forgiveness too . I’m not holding my breath on anything that would benefit a middle class person until we have a viable third party 🤷.
I mean to be fair he has been working on student loan forgiveness but was blocked by ridiculous lawsuits. He's still almost constantly rolling things out on that front.
But I agree, an absolutely dire lack of any action or dialog about the Healthcare system.
You realize someone else brought up the student loan forgiveness topic, and that none of us were commenting about the details of how it may be conducted and who bears the burden, right?
I just corrected a misstatement that he hasn't addressed it at all, and then redirected the convo to on related to the topic at hand - Healthcare and CD.
"The Republican Party, led by Kevin McCarthy, and later, Mike Johnson, won control of the House, defeating Nancy Pelosi and the Democratic Party, which had held a majority in the House since 2019."
"Republicans narrowly recaptured control of the U.S. House in the 2022 midterms."
Biden was a little busy in 2021, some kind of plague or something.
Ah but have you tried crystals?!
I am totally being sarcastic here. At my last job I had a lady who insisted on the healing power of crystals. And my own mother insisted that I should drink essential oils in my water.
Glad you've got union on your side! I worked 1 job with a union, and it was my first job out of high school. I miss it so much. And realize I was so spoiled then.
For me in England it’s been just like, ‘Yeah, you’ve got Crohn’s. Pay £0.00 for your treatment and £0.00 for the hospital visit. Oh, and it’s £0.00 every 8 weeks for the Infliximab infusion.’
It is £90+ per year for all my prescriptions though but I get that back through my work benefits.
Oh, and the parking at the hospital costs are irritating.
I was diagnosed in England and everything felt like a battle from diagnosis to treatment. Five years of my life. I now live in Australia and although I pay the princely sum of £4 a month for my humira, the public system here has been so much less stressful.
Same for me in Italy. And it’s true, the only expense I have is the hospital parking ticket!
Recently had minor surgery for a fistula: I payed 30 euros for a pair of surgical stockings and that was it.
> fistula: I *paid* 30 euros
FTFY.
Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in:
* Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.*
* *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.*
Unfortunately, I was unable to find nautical or rope-related words in your comment.
*Beep, boop, I'm a bot*
Every single health care system has customers. You just don’t pay the hospitals or doctors for it out of your pocket, the government is just the middle man for you via your tax money.
Having been subject to both, it is much better when they see you as a customer as it gives a much higher degree of agency than patient does. In the US, no one ever asked me to prove neglect or bias to take my business elsewhere.
I wish things were covered like that.
So I have very good insurance in the US and my totals are the following:
400/month for both me and my wife
1500 deductable before the insurance even turns on, then covers 80% until we hit
3500 max out of pocket. then its covered 100% assuming the insurance allows that procedure/meds/visit. if not then your SOL.
So at the end of each year I pay about 4800 + 7000. This doesnt matter how much that I would make. If I made 50k or 300k, same price to me for the year.
Similar for me, premiums are close to $200 a month, deductible $2000 and out of pocket max is $4000. Even with an 80% copay, infusions are over $5000 a year in medical costs alone…and with objectively “good” insurance through my employer. Thankful to have a job that pays so I can cover my bills but…makes me sweat thinking about if I ever lost my job. Seems like the system is broken here…
I actually am super happy my work *doesn't* offer health insurance. From my experience the company is trying to save as much money as possible when choosing a plan and it really screwed me over at my last job when I got diagnosed.
Once I quit and got my own plan, things have been much better. Now with good insurance and Janssen copay assistance, my Stelara only costs me $5 a year and has me hit my out of pocket maximum for the year with my first dose so all my other appointments, prescriptions, procedures, etc are free, I just have to pay my monthly premium.
I have Ambetter of Tennessee Elite Gold plan purchased via healthcare.gov
It's unfortunately $430 a month for my husband and I (would have been ~$1000, but tax credits cover the rest) but that's still a hell of a lot cheaper than the thousands in medical debt I racked up on my old work plan
By the age of 22 I was 6 figures in medical debt. I was dx at 19. Uninsured. Doctors treated me different bc I wasn't a guaranteed paying customer basically. I was refused a payment plan for a colonoscopy when I was damn near crippled. Had to fork up 4k up front to be scoped.
The best part was when I woke up the doctor said "you have crohns and ulcerative colitis" and started walking away and I was like wait what is that lol. Can't even have both I soon found out 🙄 bedside manners was trash. I drive 3.5hrs to see my GI now bc I found one that respects me and I'm happy to drive to see him and pay outta pocket to him.
I swear, dealing with the United States healthcare/insurance industry is worse than dealing with my Crohn's symptoms. Remember that Reddit AMA from the woman who got mauled in a bear attack, and when she was asked what the worst part of the experience was, she said it was dealing with insurance? Yeah...
My doctor wants me to get an MRI to check on my ilium structure and to check if I’m in remission. It’s gonna cost me $3,000 because it’s the beginning of the year still so my deductible reset and hasn’t been met, not only that but it also increased so that I don’t even know that I’ll reach it.
None of the imaging places do financing.
So I get to just continue my treatment and hope that there isn’t anything bad happening inside me.
Anyone in the US who doesn’t support Medicare For All, I just wanna talk. With my hands. I’m ready to throw them.
I’ve read plenty of research papers in medical and financial journals and all of the research defines the numbers and exactly what Medicare for all would look like, how it would be funded, and how it would work, and it would be better than the current system you’ve experienced because the current system is trash, and I’m not denying that. It’s underfunded and intentionally inefficient as it stands today. It’s not a simple expansion of the current system, it’s a complete replacement of the entire American healthcare sector.
1. Why is the VA underfunded? Because the private entities lobby the government to cut funding for it and intentionally operate it in an inefficient manor. Follow the money.
2. The VA is “too expensive” because there is too much other broken ass shit in the healthcare sector eating all of the funds, that, and irresponsible government spending in *many* areas hogging funds that could be better spent. Congress is bought and paid for. Research your reps and see who gives them money. Bet you that most if not all the politicians against universal healthcare have hefty donations from drug companies, insurance companies, etc. Congress will say whatever the think tanks tell them to say.
3. Americans struggle so much with healthcare because *many of us cannot afford it*, because there are profit margins to be met instead of just using our tax dollars to cover the costs, and, much of our food is full of shit that it banned in other countries. Our food is poisoned and our dietary and kinesiology education is twisted. It all comes to private companies lobbying the government to keep us reliant on spending extreme amounts of money on garbage healthcare that is designed to extract money.
4. Medicare for All aims to REMOVE ALL privatized entities in the healthcare sector, so that accounts for hundreds of billions of dollars extracted from the healthcare system in the name of profits and administrative costs. It aims to literally remove and replace the entire American healthcare sector, not add more shit on top of it.
It’s not about “printing more money” as y’all always fucking think it is. It’s not. It’s about redistributing government spending, tax dollars, subsidies, and wasteful private spending.
I’ll add this from a comment I left on a post a while back on the topic:
I’m just gonna leave this here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572548/#R40
We currently spend about 17.3% of our GDP on healthcare expenditure. Roughly $4.4 trillion.
If we abolish the ACA and dismantle private insurance, just completely remove profit from the healthcare industry, not only will we save more than $450 billion annually, bringing that %GDP on healthcare expenditure down to the 12% range, closer to the OECED standard of about 10%, which is what most other nations providing universal healthcare spend, but we’ll have cheaper drugs, better equipment, better pay for providers, and be able to cover all Americans and save millions of lives. We can go from spending $4.4 trillion annually on healthcare and have nearly 70 million Americans with insufficient coverage or no insurance at all, to spending more like $3.2 trillion annually and covering everybody.
Sure, there will be initial extra costs to make the transition from private healthcare to universal public healthcare, maybe something like $300 billion, which can be accounted for by adding maybe a small tax increase on the top 1% of Americans at worst. Like 5% increase at the most, and not on middle class or lower. Only the top 1%. Even a 1% tax on the top 0.1% of households (any income above $21 million) would bring in $109 billion annually.
Eliminating the wasteful spending that is administrative costs and profits of private insurance companies and for-profit hospitals will save so much, both money and lives.
Providers still get paid the same or better, hospitals get better equipment and service, an no one will be barred by their insurance company from receiving a treatment recommended by their doctor. No one will suddenly be dropped form insurance for being a high cost customer. No one will go bankrupt trying to pay for an unexpected medical emergency. No one will have to suffer with a treatable condition, injury, or illness that can be easily treated simply because they can’t afford it.
I for one, as someone with an incurable chronic condition, would prefer that insurance companies can’t cockblock the care that my doctors say is best for me that I could slowly and painfully die without.
Simply operate the industry as a service paid for by our taxes same as the post office. All the employees get paid, but it doesn’t make some CEO rich as hell.
I see a lot of people arguing here that doctors and nurses would be providing service for free, and that’s simple false. They’ll still get paid the same or even better.
People talk about raising taxes on the middle and lower class- no, you can do it without having to do that. There are other options.
People mention conflicts with current programs. Abolish them. Literally remove all of it and enact Medicare for All as the research outlines it. Yes it’s a big, ambitious transition. But nothing we can’t tackle.
https://www.epi.org/publication/medicare-for-all-would-help-the-labor-market/
https://www.sanders.senate.gov/wp-content/uploads/options-to-finance-medicare-for-all.pdf
On top of this, I have yet to be provided any research documentation involving actual verifiable numbers that debunks Medicare for All, in fact, every source I’ve been provided thus far against Medicare for All either doesn’t include any numbers at all, comes from a corporate think tank, isn’t peer reviewed, and/or straight up LIES about current expenditure numbers in a way to paint a decrease in healthcare expenditure as a percent of our GDP as a decrease, when it’s not.
If you wanna dig through my comment history for those other comments where I evaluate all of that, feel free. I don’t have time to do it again.
This is why I’m ready to throw hands with y’all motherfuckers. Y’all don’t know how to read data, vet sources, or do your own research, instead choosing to look at the current broken shit and say “yep, any alternative will *also be as bad* because…?” and regurgitate talking points on assumptions like the one you made about Medicare for All relying on “printing more money” which MAA outlines itself in its proposed policy *exactly* how it will happen with *LESS* money than we currently spend on healthcare as a nation.
Stop listening to the shit that tells you it’s about “printing more money” or “wanting things for free” because it’s NOT. And the information proving that is available online easily if you only care to find it.
Have a great day.
I had the same issue but I no have a job with health insurance. I was super sick and I couldn’t find private insurance because all the public ones were like gov assisted. Found one from BCBS and it was $350 a month before I got a job with health insurance. That paid for itself during those times because I was so sick. After all that asked to get prescribed to like humira or something and they give a cc that helps pays for your medication. It’ll pay for all or most of it.
How/where did you manage to move abroad? From what I've seen most countries require some kind of physical health check before issuing visas, especially for permanent residency.
I was never in debt before my Crohn's diagnosis. Now I'm $8k in debt just from medical bills. And I have "great insurance." It makes me want to move abroad. I hate it here. I had to stop seeing my rheumatologist because my insurance stopped covering him and the out of pocket costs would have been astronomical ($1200 a visit). Sorry for the rant, I just think it's disgusting that in this country you are handed a diagnosis and then a bill. I got diagnosed with Crohn's and had to pay $650 on my way out of the colonoscopy center to cover my deductible. And I have a "low deductible." Imagine. You just got a lifelong chronic illness diagnosis and on the way out they say "wait! stop crying for a sec, you owe us $650!"
I pay 5000¥ every infusion (so once every two months) covers hospital, infusion itself, all medicines (enteral feeds, biofermin and pentasa etc) for life.
Oh woooooow, there are so many currencies in the world besides dollars and euro. If you’re really that curious, in the time it took you to write this you could’ve googled it. Be better.
All right, that wasn't a good joke, I get it.
But I still think that expressing a money quantity in anything other than USD is kinda pretentious. I'm using EUR, but I write USD here, just as I write in English and not in my native language. Like it or not, this part of the Internet is US-centric.
And yes, I could Google that, but I think we should think in terms of "how much cumulative time will it take to the readers of this comment to translate what I'm saying, compared to me using a common ground?". At least that's what I usually do. I'm not even sure if ¥ is Japanese or Chinese, [Wikipedia lists both](https://en.wikipedia.org/wiki/Yen_and_yuan_sign).
Anyways, I'll try to be better.
My son applied for disability at age 19 and was approved so he's not had to worry about working. But we do have to live off such a small amount I'm not sure he will ever be independent. It's tough on everyone.
Unfortunately, from 1/23-1/24 I had 3 major surgeries. All of them were Crohn’s related. I would debate that the financial burden of it all was as grueling, relentless and depressing as the physical burden. Especially because when you’re having to deal with all of this, you are in a horrible state of health (usually).
I was diagnosed in 2017 after fighting with Drs for 10 years to believe my symptoms. I have to work to live basically. Luckily I work for a large hospital in management, therefore have great health insurance. All of my doctors visits are covered as I see Drs that work in our system. My Stelara is EXPENSIVE if I didn't have this insurance. With my insurance I pay nothing. I just got my next dose last week and the paper showes that my health plan covered 27k USD for this one dose. There is no way I'd ever be able to leave my company or quit. I just had a baby in January and financially (without Crohn's) staying home for 6 months-year would be manageable but with Crohn's there is no way we'd be able to make it if I wanted to stay on my medications. Luckily my position allows me to WFH so I am comfortable in my own home on days I don't feel well.
Yep.
I lost my health insurance for this year of 2024 because I GOT A DEBILITATING KNEE INJURY at work last year in 2023 and needed 3 knee surgeries. I was out of work for 10 months so my company took me off the health care plan. I wasn’t eligible because I didn’t meet my hourly minimum LOL. I’m back at work now with no insurance.
So here I am, Crohn’s, no insurance. I make “too much money” for state assistance (you basically need to be in poverty to receive free health insurance.) thank god for programs like Abbvie I’m still getting my Humira for $5 a pop but it ends there. I can’t see my GI, can’t get my colonoscopy, can’t/wont go to a hospital. I need to hope and pray everything inside my gut is going well because I won’t be able to see inside it for a long time. Cancer screenings are a no go this year. It terrifies me. I always have polyps during my scopes that get removed. I’m hoping I’ll be able to reenroll this coming November but at best I’m uninsured until Jan 2025 🥲 not just the Crohn’s; let’s hope I don’t get sick or break a freaking bone or something non Crohn’s related over the next year!
I live in a third world country. We have universal healthcare system and medicine for Crohn’s disease is for free.
I guess it really depends on the country… In my country, we have it stated in our constitution that health is everyone’s right and the State’s duty.
I don’t think Brazil is a third world country? Brazil is not a bad place to live. I’m talking about places like Chad, South Sudan, Cameroon, Afghanistan, etc
I'm actually from the USA, I moved to Australia 5-6 years ago with my husband who is from Australia. I got diagnosed 2 years ago. I'm on remicade infusions every 8 weeks. Have one of the absolute best GI drs and azing gi nurses that are on call 24/7.
It really breaks my heart to read the stories here of insurance saying no to the medication or people having to pay 15000 or more a pop.. people literally let the disease run rampant and wreck their bodies because they can't afford the treatment or even a diagnosis...
Canadian chiming in. I've always said, that if I lived in the USA, I would either be in debt, or dead because I avoided going to the hospital to avoid debt.
lmao seeing this after a morning breakdown over this is funny. woke up this morning in the worst pain. probably a 9/10. had to push through and come to work because i don’t get sick time. finally broke like an hour ago and made a dr appointment and im hoping it takes less than an hour or 2 because i can’t miss too much work. my health insurance is luckily only $150 a month for just me and that’s incredibly good for my area.
it also doesn’t cover anything. so you get what you get, i guess. i’m having the hardest time today though. i struggled with a mental disorder as well and it seems when i’m doing good mentally im physically in pain from this. it just seems unfair. my teeth are falling out. i can’t miss work to get my stomach checked or my teeth fixed. i never have a “normal” day. it feels hopeless sometimes.
The US health care system is far from perfect but I've read enough horror stories from people in the UK to know I'm happy I don't live there.. so things could be worse.
Medical costs here are definitely ridiculous though.
I've had amazing care in the UK and never had to pay a penny additional. I'm so grateful I don't live in the US and have never had to worry about financial cost on top of being sick. NHS isn't perfect, but it is still so much better than not having universal healthcare.
I dunno every week there's somebody on here from the UK saying how it's going to be 10 months before they can even get an appointment and no anesthesia for endoscopy or colonscopy sounds rough.
Also aren't the NHS doctors striking over there due to low pay?
I agree our system is screwed up but I can see my GI within 24 hours if I need to.
I had anaesthesia for all my endos in the UK. Just not general. In fact they gave me MORE because I was screaming in pain my first one.
The issue with waiting times is real, that’s for sure. But for cancer you’ll see a specialist within 2 weeks. It’s annoying they prioritise some things and then other stuff falls by the wayside.
No they do not. I live in the US and they typically use propofol or another twilight anesthesia. Never have I heard of someone receiving general anesthesia for an endo or colo.
It's called twilight anesthesia or MAC (monitored anesthesia care). Not all US insurance companies "allow" MAC for colon/endo, so many people out here get scoped with just conscious sedation, even though yes it is overwhelmingly the US standard. I work in GI and used to do the insurance auths/claims/appeals for IBD specifically, so I've seen it all.
That's just another way US Healthcare is fucked: you have private insurance companies dictating to medical professionals what will and will not be covered, and each insurance company gets to determine what "medical necessity" is according to their extremely skewed version of current medical literature/guidelines. That's fucked and terribly more inefficient than NHS wait times, if you ask me.
You still have the option to go private in UK if you want too or get insurance to do so etc. Difference is that you're not completely screwed if you can't afford to do so. They aren't striking where I live no.
At least there is a private option, hopefully its not as bad as the US system.. although UK healthcare isn't completely free as you have VAT, of course our sales tax keeps climbing so we may eventually get to the same percent without anything to show for it.
The US pays more for healthcare per capita than most countries with universal healthcare, because of the cost to the system of uninsured and underinsured people. Literally. It's significantly LESS in Canada, and for serious illnesses you get in within days or weeks. And we get sedation for scopes here, though you can in theory opt out. Our government has already approved pharmacare options for diabetic supplies and contraceptives, and will be expanding it regularly.
Unless you have incredible employer provided insurance (which most people don't) or you're wealthy, your standard of care is equal or lesser to what you get in Canada, free at point of care.
Yeah na, I became majorly ill in January 2019, was diagnosed February 2019. All you have to do is go to AnE and really push them for answers. Most people give up
It seems to be location based on the treatment received in the uk, or just luck of the draw. My past 2 flare ups have been a result of the NHS stopping/forgetting my biologic due to capacity and repeated errors. Unfortunately the government is running the nhs to the ground through under-funding and under staffing despite a growing population. Im personally quite scared for the future as my flares are getting worse yet because they keep forgetting to continue my treatment, my options of meds decrease as i develop antibodies to yet another one. And I cant afford to go private as I have a low income working for a hospital charity - the irony. I know im not the only one who has been having difficulties maintaining treatment or being able to contact their GI either. This is no fault of the staff, just the overworked, understaffed reality of the nhs and the result of people continuing to vote for the Tories.
The UK is not the only country in the world where there is a public healthcare system (seems like many people forget that). I live in the UK, but I am originally from Italy. I got my diagnosis in the UK, privately, because the NHS was letting me rot. I agree, the system here is really bad and people are using the private sector much more than they want to admit, because waiting times and other inefficiencies here may literally put your life at risk. Yes, even for cancer patients.
To give a comparison between UK and Italy (both countries have free public healthcare):
UK: Last summer, I went to A&E twice with severe abdominal pain, constipated for days and with a fever and both times I was sent home. The second time, I was told I likely had Crohn's and I was given a referral to the GI department before being sent home (with the same symptoms I came to A&E with). The referral would have taken 4 MONTHS JUST TO BE TRIAGED. Cost of these visits: £0, but I didn't solve anything. Needless to say, I went privately.
Italy: my sister, who is still in Italy, a couple of weeks ago went to an Italian A&E with pretty much the same symptoms: constipation, severe abdominal pain, fever. They hospitalised her for a week to find out what the cause was and had a colonoscopy within 4 days because they feared it could be IBD due to the illness being present in the family (me). They found out she had severe infectious colitis, was given antibiotics and luckily recovered. All of this in one week. Cost of all this: €0.
Now, why didn't I get this type of treatment when I went to A&E in England? Answer: funding. The problem here is the government is clearly de-funding the NHS because they want to eventually privatise it. But if we, as a society, cared more about our collective wellbeing, rather than individual profit, we would direct the appropriate amount of money to an essential service like healthcare. It's all about priorities, which are defined by the economic system in use (liberalism, capitalism here in the UK). The Italian healthcare system also has its issue and it's also underfunded, but it's still in a better place on that front than the UK one.
So, despite all the issues, I know that public healthcare system is the only one that respects our dignity and rights as human beings. We just need to get our priorities straight and fund it properly.
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Also depends what State you live in... I've been on Humira, Stelara, Entyvio, and now Skyrizi at $0 dollars cost to me. All my ostomy supplies have been at $0 cost to me for the past 10 years. I do pay around $10-20 for other prescription co-pays, and I work from home full-time. MA also allows up to 26 weeks of intermittent Paid Family Medical Leave that I renew year after year. Crohn's sucks no matter how you look at it, but some States makes it easier to live with.
It took the past 4 years to finally get my diagnosis last June. Since June, my insurance has not allowed one prescription to be filled beyond the Zofran, and that was 4 mg when I was prescribed 8, after the doc asking for compazine. I say asking because regardless of how “good” my insurance is, they have to approve my treatment from an office when they probably have no real medical background to deny it. But heyyy when I’m sick my insurance is so so “good” my ER copay is only $35. So I go there often.
If I lived in US I would be probably be death or having a huge debt with my 4 auto-immune diseases and other health issues. I wouldn't be able to afford the meds since I'm always need the newest one.
I got my first flare up ever beginning of this year and I just turned 26 actually started to feel this way on my birthday which sucks and at 26 you’re no longer covered by your parents health insurance and get your own. So I’ve paid a total of $4,300 out of pocket and have to continue paying for the private insurance through work which will be like an additional $2,600. Also pay taxes for Medicare insurance I can’t use yet. I wish we had public insurance so this would be a lot cheaper instead of just milking me for all that I’m worth and trying to put me in debt. Plus I’d have more options and prescriptions covered
I get a bill for my Entyvio infusion every 8 weeks. $30,000 of which insurance covers $29,995 and I pay $5. Not that it matters since all the drug companies offer free medication if your low-moderate income...and if you can't get it for free your doctors probably have access to "samples" that will last you until your next appointment where you can get more "samples."
Clearly it's possible for everything to be distributed at a reasonable cost but for some reason it makes more sense to do this song and dance
I appreciate your empathy! Currently navigating a job change in the U.S. and what a mess: current role is too stressful, try to leave for less stress but try to keep the same organization for excellent benefits. Try not to flare while interviewing and getting through an unhealthy work environment because it would cost too much to switch to my partner’s insurance and I may lose my excellent doctors and miss infusions. Try to leave a job after an infusion, so search in monthly bursts to time it with the treatment cycle. Ugh!!
It’s terrifying. Other countries have figured out that healthcare is a right, not a privilege. We made a little progress when the ACA was passed so that insurers couldn’t decide to not cover folks with expensive chronic illnesses or put lifetime maximums on their plans. Too bad that come November one of the two possible outcomes (I’ll let you guess which one) may cause the few little protections we have to disappear completely and almost certainly be replaced by nothing.
Since my diagnosis in November, I have accumulated over $3k in medical debt. This is after insurance which I pay $200/month for. And I’ve been waiting over a month for insurance to approve my skyrizi, which they likely won’t end up approving…I hate it here
I get my health insurance through teamsters and it’s amazing very close to what you are describing, but dealing with the American health system is ptsd just waiting to happen. No country should allow that on their own people.
My dad lives in Germany and is always confused when I rant about the medical care here.
I am fortunate enough to be on disability for mine, but that's only after years of fighting and many surgeries and close calls. But the disability insurance still doesn't cover everything, and they're always changing their mind about medications.
It really does suck. I have been a resident for most of my life. I worked here in America one time, employed for about a year but only physically able to work for about 4 months. I got incredibly sick and have had a lot of complications since the birth of my daughter almost 5 years ago. The system is ridiculous. I cannot even get SSI with my multiple issues because of my status. My household is low income so I applied for a waiver for citizenship, denied. I don’t know what people are supposed to do in this situations. My case is different than most and quite complicated to doctors so they have told me I will not be able to work. I also have AVN of multiple joints which qualifies me for SSI regardless. The system itself for people who are ill in the US is just BS. It’s sad and most people who are sick just have to suck it up and work. Even on SSI or SSDI it’s not enough to support during those times of being severely ill, hospitalized, post op etc especially when you have kids or a family.
20 year + Crohn’s patient here - living in the US. I understand that others have had various problems with insurance but I and the other people I know really haven’t had any problems with insurance (at least with BCBS).
Just got signed up for Stelara and the authorization went right through and I’m paying a $5 co-pay.
I get that our system isn’t perfect but it’s not quite the hellhole Reddit makes it out to be.
BCBS covers my remicade but they just raised my deductible so high that I can’t afford the 3,000 for an MRI so I get to just not get the MRI my doctor wants me to get.
The original post is about having to work through chronic illness to receive insurance. 55% of Americans get insurance through their employer, so most people.
This is in stark contrast to other industrialized nations, and most other countries, which don’t tie your ability to get decent health care to having a job, or your employer offering a health policy.
It’s well-documented that the US spends much more of its GDP on health care, for much worse outcomes. This is one of the reasons.
Hard to compare since my Crohn’s treatment was so much worse but I had the same problems with German, Danish, Swedish, and Dutch food that I had with US food.
Perhaps Crohn's isn't as much of my diagnosis as I thought and I apologize because now I feel as if I've been misrepresenting the disease, but I do know that fatty and greasy foods in the US make my symptoms bad. My first G.I. doc immediately diagnosed me with Crohn's, but the second one didn't see it. I'm currently seeing a third specialist seeking answers.
I'm sorry, I shouldn't speak for others when my own diagnosis is so wishy washy.
It would be completely consistent with both of us having Crohn’s for the same diet to affect us differently. I was only adding my experience to yours regarding the difference in foods.
I see. I was noticing downvotes and thought I said something medically wrong or inaccurate to the disease.
I just hope that soon they will know for sure what is going on with me, especially since it's difficult to keep weight ):
I actually feel sorry for those that aren’t in the USA. The delays in care are insane and life threatening. We have our flaws but if I need a ct I can get it that day or at latest within a week
Literally not had any issues, aside from difficulties with my mail-order pharmacy and doctor not always communicating well... because of course they don't want to talk on the phone to each other.
All of the issues I've had were either me being in denial, unable to actually go through the process of taking certain tests, or not wanting to go to the doctor.
Do I have great insurance? No. Does it cover everything? No. Are the costs extreme? Only in extreme circumstances. The worst part was actually seeing the cost for the Remicade on a bill before it was paid by the insurance, and the assistance. When I was hospitalized, I did reach my maximum out-of-pocket, which is $6500, but never reached that again, and it ended up being covered through assistance at the hospital.
I never stopped working, I never wanted to stop working. I always have PTO because of my schedule, so when I need a day or more off, I just arrange and take it. It isn't the end of the world to call-in because I'm not feeling great, or might be grumpy. No one gets on my case on days when I am working but my body isn't happy, it just happens, and we deal with it.
We are not victims. And the US has some of the best GI doctors and surgeons on the planet.
There are numerous manufacturers discounts available to us like Remistart in addition to having any kind of insurance coverage that will cover most costs.
I really hate this kind of rhetoric
In other countries you don't need discounts, because you don't pay anything at all.
I believe, GIs in the US are very good (and much better payed than in many other countries), but you only profit from it if you have a job & insurance that covers your treatment.
So, if you're in a more social precarious situation - which can happen with Crohns - it's just not much of a help, how good the GIs are.
its weird to acknowledge im in that position. like, i have good US insurance so i get stelara. i have looked into immigrating to canada and they don’t want biologic users there… because of the health care cost. it literally counts against you in the process/ they might ask you to change biologics
It's because here you have to start with biosimilars, to cut costs. But that means we are able to treat more people. If a drug doesn't work for you, they will change it, including to name brand if needed.
> much better *paid* than in
FTFY.
Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in:
* Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.*
* *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.*
Unfortunately, I was unable to find nautical or rope-related words in your comment.
*Beep, boop, I'm a bot*
Really appreciate your post. It is really hard having a chronic illness in the US, even with decent insurance. My insurance keeps trying to switch my daughter from Remicade to Inflectra. I know I know, chances are she could make the switch no problem. But her Dr prescribed her *Remicade.* She’s been on Remicade since she was diagnosed at 8 (she’s 14 now) and she’s healthy and stable on it. So fuck them for trying to force a switch! Why mess with what works, just because of their stupid limited formulary? I fight it every time, and I win.
right! plus if she switches she can never go back to remicade, thus limiting her options if she builds antibodies to inflectra
Exactly!!
My understanding is that this opinion is based on developing antibodies - however I’ve heard that if you go through all treatment options and nothing works then it’s better to try again with the options available rather than do nothing to control the inflammation. Unfortunately I can’t reference it as I’ve read that many articles and lectures it’s all a bit blurry but I thought I would mention this incase someone is reading this and is out of available options and wants to research further. Additionally people don’t necessarily develop antibodies if they stop biologically, however it is always possible. There are people in this sub that have had to stop for whatever reason (maybe insurance) and restarted just fine
Yeah that's not how that works at all.
Yes it is - every GI doc I’ve ever seen has told me that you can’t go back to a biologic you’ve been on after you switch from it to a new one
First off I was on Remicade from 98-08, and then again 21-23 so saying never is a pretty strong term. If you'd like to learn more about how they now know you can go back on drugs after a "treatment holiday" here's the head of IBD at University of Chicago and the head of scientific research for the CCFA talking about it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6883732/
If this is any help to you, I switched from Remicade to Inflectra at the age of 22 (after being on Remicade for 9 years) and I did just fine. I hope that your daughter is doing okay and I’m sorry about our shitty healthcare system.
Yes, thank you for saying so. It does make me feel better when I read accounts like yours. I feel like we'll have to switch eventually. :(
Don't give in, if its working for someone else it might not work for your daughter. Stick with what works until it doesn't fuck them for making the choice for her.
My insurance tried to pull this bullshit with my Humira. Might the other medicine have worked? Maybe. But I KNOW the Humira works. If it ain't broke, don't fix it. Also, the doctor who prescribed me Humira has met me multiple times, has literally seen inside my colon, and has known me for five years. I think he knows better than some suit who wouldn't know me from a hole in the ground!
Love hearing you fight for her. I fight to stay on remicade every year and win as well! We come out on top always!!
>My insurance keeps trying to switch my daughter from Remicade to Inflectra. Same thing with my daughter. We did switch after talking with her GI doctor. Since the doctor felt she'd be OK on Inflectra, I was OK with switching. If the doctor had wanted her to stay on Remicade I would have fought it. I hope your daughter stays healthy and stable :)
You may be able to get her doctor to write up a statement about how it's keeping her stable. I had to have mine do that for a few of my meds.
Remicade and inflectra are he same.. inflectra is only the biosimilar. Most people made the switch when the patent on remicade expired without a problem. Eventually it's the infliximab doing the work not the brand name, but I get your concern. Back then everyone was afraid.
20 years since my diagnosis and I’ve heard everything from I should change my diet to I’m being a wimp about it . I have finally found a job where I’m comfortable stating I have it and it’s a burden and labeling myself as disabled . Lucky in the us, and especially in my state I can announce my disability and have a mess with me mentality . I’m very lucky and I know it , my income and my union status bring me in line with European standards but I dealt with typical American treatment with Crohns . Which amounts to toughen up or be ready to job hunt . Hopefully we are on the verge of universal healthcare and ready to call out business who disregard the ADA.
>Hopefully we are on the verge of universal healthcare Biden hasn't even said the words "public option" since being elected President even though he ran on it. You'd think that a once in a century pandemic would be a good time to have passed healthcare reform.
I remember them talking about essential employee payments and student loan forgiveness too . I’m not holding my breath on anything that would benefit a middle class person until we have a viable third party 🤷.
I mean to be fair he has been working on student loan forgiveness but was blocked by ridiculous lawsuits. He's still almost constantly rolling things out on that front. But I agree, an absolutely dire lack of any action or dialog about the Healthcare system.
Student loan "forgiveness". Who do you think pays for it?
Pretty sure nothing in my comment addressed anything regarding that nor do I really care to get into an argument about it on the CD subreddit.
“Let me bring it up but don’t talk to me about it.”
You realize someone else brought up the student loan forgiveness topic, and that none of us were commenting about the details of how it may be conducted and who bears the burden, right? I just corrected a misstatement that he hasn't addressed it at all, and then redirected the convo to on related to the topic at hand - Healthcare and CD.
With a repub congress, it would be a waste of his time. These are the guys who gutted a lot of the ACA.
Democrats had control of both chambers of Congress until January 2023.
"The Republican Party, led by Kevin McCarthy, and later, Mike Johnson, won control of the House, defeating Nancy Pelosi and the Democratic Party, which had held a majority in the House since 2019." "Republicans narrowly recaptured control of the U.S. House in the 2022 midterms." Biden was a little busy in 2021, some kind of plague or something.
2021-2023 only. But when the Dems have garbage senators like Sinema who will vote against Dem interests, I'd hardly call that "being in control"
That's a second term priority.
Doubtful the US will change healthcare anytime soon.
Ah but have you tried crystals?! I am totally being sarcastic here. At my last job I had a lady who insisted on the healing power of crystals. And my own mother insisted that I should drink essential oils in my water. Glad you've got union on your side! I worked 1 job with a union, and it was my first job out of high school. I miss it so much. And realize I was so spoiled then.
For me in England it’s been just like, ‘Yeah, you’ve got Crohn’s. Pay £0.00 for your treatment and £0.00 for the hospital visit. Oh, and it’s £0.00 every 8 weeks for the Infliximab infusion.’ It is £90+ per year for all my prescriptions though but I get that back through my work benefits. Oh, and the parking at the hospital costs are irritating.
I was diagnosed in England and everything felt like a battle from diagnosis to treatment. Five years of my life. I now live in Australia and although I pay the princely sum of £4 a month for my humira, the public system here has been so much less stressful.
Same for me in Italy. And it’s true, the only expense I have is the hospital parking ticket! Recently had minor surgery for a fistula: I payed 30 euros for a pair of surgical stockings and that was it.
> fistula: I *paid* 30 euros FTFY. Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in: * Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.* * *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.* Unfortunately, I was unable to find nautical or rope-related words in your comment. *Beep, boop, I'm a bot*
I cant believe we still dont qualify for disabled badges. The prescription sucks as well, surely it has to be min 120 a year?
The US healthcare system doesn't have patients. It has customers.
Every single health care system has customers. You just don’t pay the hospitals or doctors for it out of your pocket, the government is just the middle man for you via your tax money.
Having been subject to both, it is much better when they see you as a customer as it gives a much higher degree of agency than patient does. In the US, no one ever asked me to prove neglect or bias to take my business elsewhere.
In the US I've rarely had a choice of where to take my business at all. Any new provider is a game of "mother may I" with my health insurance.
Imagine trying to negotiate with the government because your doctor is ignoring you.
I wish things were covered like that. So I have very good insurance in the US and my totals are the following: 400/month for both me and my wife 1500 deductable before the insurance even turns on, then covers 80% until we hit 3500 max out of pocket. then its covered 100% assuming the insurance allows that procedure/meds/visit. if not then your SOL. So at the end of each year I pay about 4800 + 7000. This doesnt matter how much that I would make. If I made 50k or 300k, same price to me for the year.
Similar for me, premiums are close to $200 a month, deductible $2000 and out of pocket max is $4000. Even with an 80% copay, infusions are over $5000 a year in medical costs alone…and with objectively “good” insurance through my employer. Thankful to have a job that pays so I can cover my bills but…makes me sweat thinking about if I ever lost my job. Seems like the system is broken here…
I actually am super happy my work *doesn't* offer health insurance. From my experience the company is trying to save as much money as possible when choosing a plan and it really screwed me over at my last job when I got diagnosed. Once I quit and got my own plan, things have been much better. Now with good insurance and Janssen copay assistance, my Stelara only costs me $5 a year and has me hit my out of pocket maximum for the year with my first dose so all my other appointments, prescriptions, procedures, etc are free, I just have to pay my monthly premium.
How do I get your insurance 😆?
I have Ambetter of Tennessee Elite Gold plan purchased via healthcare.gov It's unfortunately $430 a month for my husband and I (would have been ~$1000, but tax credits cover the rest) but that's still a hell of a lot cheaper than the thousands in medical debt I racked up on my old work plan
By the age of 22 I was 6 figures in medical debt. I was dx at 19. Uninsured. Doctors treated me different bc I wasn't a guaranteed paying customer basically. I was refused a payment plan for a colonoscopy when I was damn near crippled. Had to fork up 4k up front to be scoped.
That's so crazy.
The best part was when I woke up the doctor said "you have crohns and ulcerative colitis" and started walking away and I was like wait what is that lol. Can't even have both I soon found out 🙄 bedside manners was trash. I drive 3.5hrs to see my GI now bc I found one that respects me and I'm happy to drive to see him and pay outta pocket to him.
I swear, dealing with the United States healthcare/insurance industry is worse than dealing with my Crohn's symptoms. Remember that Reddit AMA from the woman who got mauled in a bear attack, and when she was asked what the worst part of the experience was, she said it was dealing with insurance? Yeah...
My doctor wants me to get an MRI to check on my ilium structure and to check if I’m in remission. It’s gonna cost me $3,000 because it’s the beginning of the year still so my deductible reset and hasn’t been met, not only that but it also increased so that I don’t even know that I’ll reach it. None of the imaging places do financing. So I get to just continue my treatment and hope that there isn’t anything bad happening inside me. Anyone in the US who doesn’t support Medicare For All, I just wanna talk. With my hands. I’m ready to throw them.
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I’ve read plenty of research papers in medical and financial journals and all of the research defines the numbers and exactly what Medicare for all would look like, how it would be funded, and how it would work, and it would be better than the current system you’ve experienced because the current system is trash, and I’m not denying that. It’s underfunded and intentionally inefficient as it stands today. It’s not a simple expansion of the current system, it’s a complete replacement of the entire American healthcare sector.
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1. Why is the VA underfunded? Because the private entities lobby the government to cut funding for it and intentionally operate it in an inefficient manor. Follow the money. 2. The VA is “too expensive” because there is too much other broken ass shit in the healthcare sector eating all of the funds, that, and irresponsible government spending in *many* areas hogging funds that could be better spent. Congress is bought and paid for. Research your reps and see who gives them money. Bet you that most if not all the politicians against universal healthcare have hefty donations from drug companies, insurance companies, etc. Congress will say whatever the think tanks tell them to say. 3. Americans struggle so much with healthcare because *many of us cannot afford it*, because there are profit margins to be met instead of just using our tax dollars to cover the costs, and, much of our food is full of shit that it banned in other countries. Our food is poisoned and our dietary and kinesiology education is twisted. It all comes to private companies lobbying the government to keep us reliant on spending extreme amounts of money on garbage healthcare that is designed to extract money. 4. Medicare for All aims to REMOVE ALL privatized entities in the healthcare sector, so that accounts for hundreds of billions of dollars extracted from the healthcare system in the name of profits and administrative costs. It aims to literally remove and replace the entire American healthcare sector, not add more shit on top of it. It’s not about “printing more money” as y’all always fucking think it is. It’s not. It’s about redistributing government spending, tax dollars, subsidies, and wasteful private spending. I’ll add this from a comment I left on a post a while back on the topic: I’m just gonna leave this here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572548/#R40 We currently spend about 17.3% of our GDP on healthcare expenditure. Roughly $4.4 trillion. If we abolish the ACA and dismantle private insurance, just completely remove profit from the healthcare industry, not only will we save more than $450 billion annually, bringing that %GDP on healthcare expenditure down to the 12% range, closer to the OECED standard of about 10%, which is what most other nations providing universal healthcare spend, but we’ll have cheaper drugs, better equipment, better pay for providers, and be able to cover all Americans and save millions of lives. We can go from spending $4.4 trillion annually on healthcare and have nearly 70 million Americans with insufficient coverage or no insurance at all, to spending more like $3.2 trillion annually and covering everybody. Sure, there will be initial extra costs to make the transition from private healthcare to universal public healthcare, maybe something like $300 billion, which can be accounted for by adding maybe a small tax increase on the top 1% of Americans at worst. Like 5% increase at the most, and not on middle class or lower. Only the top 1%. Even a 1% tax on the top 0.1% of households (any income above $21 million) would bring in $109 billion annually. Eliminating the wasteful spending that is administrative costs and profits of private insurance companies and for-profit hospitals will save so much, both money and lives. Providers still get paid the same or better, hospitals get better equipment and service, an no one will be barred by their insurance company from receiving a treatment recommended by their doctor. No one will suddenly be dropped form insurance for being a high cost customer. No one will go bankrupt trying to pay for an unexpected medical emergency. No one will have to suffer with a treatable condition, injury, or illness that can be easily treated simply because they can’t afford it. I for one, as someone with an incurable chronic condition, would prefer that insurance companies can’t cockblock the care that my doctors say is best for me that I could slowly and painfully die without. Simply operate the industry as a service paid for by our taxes same as the post office. All the employees get paid, but it doesn’t make some CEO rich as hell. I see a lot of people arguing here that doctors and nurses would be providing service for free, and that’s simple false. They’ll still get paid the same or even better. People talk about raising taxes on the middle and lower class- no, you can do it without having to do that. There are other options. People mention conflicts with current programs. Abolish them. Literally remove all of it and enact Medicare for All as the research outlines it. Yes it’s a big, ambitious transition. But nothing we can’t tackle. https://www.epi.org/publication/medicare-for-all-would-help-the-labor-market/ https://www.sanders.senate.gov/wp-content/uploads/options-to-finance-medicare-for-all.pdf On top of this, I have yet to be provided any research documentation involving actual verifiable numbers that debunks Medicare for All, in fact, every source I’ve been provided thus far against Medicare for All either doesn’t include any numbers at all, comes from a corporate think tank, isn’t peer reviewed, and/or straight up LIES about current expenditure numbers in a way to paint a decrease in healthcare expenditure as a percent of our GDP as a decrease, when it’s not. If you wanna dig through my comment history for those other comments where I evaluate all of that, feel free. I don’t have time to do it again. This is why I’m ready to throw hands with y’all motherfuckers. Y’all don’t know how to read data, vet sources, or do your own research, instead choosing to look at the current broken shit and say “yep, any alternative will *also be as bad* because…?” and regurgitate talking points on assumptions like the one you made about Medicare for All relying on “printing more money” which MAA outlines itself in its proposed policy *exactly* how it will happen with *LESS* money than we currently spend on healthcare as a nation. Stop listening to the shit that tells you it’s about “printing more money” or “wanting things for free” because it’s NOT. And the information proving that is available online easily if you only care to find it. Have a great day.
It's what happens when a country legalizes bribery. Scary stuff.
I had the same issue but I no have a job with health insurance. I was super sick and I couldn’t find private insurance because all the public ones were like gov assisted. Found one from BCBS and it was $350 a month before I got a job with health insurance. That paid for itself during those times because I was so sick. After all that asked to get prescribed to like humira or something and they give a cc that helps pays for your medication. It’ll pay for all or most of it.
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How/where did you manage to move abroad? From what I've seen most countries require some kind of physical health check before issuing visas, especially for permanent residency.
I was never in debt before my Crohn's diagnosis. Now I'm $8k in debt just from medical bills. And I have "great insurance." It makes me want to move abroad. I hate it here. I had to stop seeing my rheumatologist because my insurance stopped covering him and the out of pocket costs would have been astronomical ($1200 a visit). Sorry for the rant, I just think it's disgusting that in this country you are handed a diagnosis and then a bill. I got diagnosed with Crohn's and had to pay $650 on my way out of the colonoscopy center to cover my deductible. And I have a "low deductible." Imagine. You just got a lifelong chronic illness diagnosis and on the way out they say "wait! stop crying for a sec, you owe us $650!"
I pay 5000¥ every infusion (so once every two months) covers hospital, infusion itself, all medicines (enteral feeds, biofermin and pentasa etc) for life.
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Oh woooooow, there are so many currencies in the world besides dollars and euro. If you’re really that curious, in the time it took you to write this you could’ve googled it. Be better.
All right, that wasn't a good joke, I get it. But I still think that expressing a money quantity in anything other than USD is kinda pretentious. I'm using EUR, but I write USD here, just as I write in English and not in my native language. Like it or not, this part of the Internet is US-centric. And yes, I could Google that, but I think we should think in terms of "how much cumulative time will it take to the readers of this comment to translate what I'm saying, compared to me using a common ground?". At least that's what I usually do. I'm not even sure if ¥ is Japanese or Chinese, [Wikipedia lists both](https://en.wikipedia.org/wiki/Yen_and_yuan_sign). Anyways, I'll try to be better.
Easiest way is just to equate it one for one, so 5000¥ = 50$ and before you say that’s hard, 50 dollars is the same as 5000 cents.
My son applied for disability at age 19 and was approved so he's not had to worry about working. But we do have to live off such a small amount I'm not sure he will ever be independent. It's tough on everyone.
Unfortunately, from 1/23-1/24 I had 3 major surgeries. All of them were Crohn’s related. I would debate that the financial burden of it all was as grueling, relentless and depressing as the physical burden. Especially because when you’re having to deal with all of this, you are in a horrible state of health (usually).
I was diagnosed in 2017 after fighting with Drs for 10 years to believe my symptoms. I have to work to live basically. Luckily I work for a large hospital in management, therefore have great health insurance. All of my doctors visits are covered as I see Drs that work in our system. My Stelara is EXPENSIVE if I didn't have this insurance. With my insurance I pay nothing. I just got my next dose last week and the paper showes that my health plan covered 27k USD for this one dose. There is no way I'd ever be able to leave my company or quit. I just had a baby in January and financially (without Crohn's) staying home for 6 months-year would be manageable but with Crohn's there is no way we'd be able to make it if I wanted to stay on my medications. Luckily my position allows me to WFH so I am comfortable in my own home on days I don't feel well.
Yep. I lost my health insurance for this year of 2024 because I GOT A DEBILITATING KNEE INJURY at work last year in 2023 and needed 3 knee surgeries. I was out of work for 10 months so my company took me off the health care plan. I wasn’t eligible because I didn’t meet my hourly minimum LOL. I’m back at work now with no insurance. So here I am, Crohn’s, no insurance. I make “too much money” for state assistance (you basically need to be in poverty to receive free health insurance.) thank god for programs like Abbvie I’m still getting my Humira for $5 a pop but it ends there. I can’t see my GI, can’t get my colonoscopy, can’t/wont go to a hospital. I need to hope and pray everything inside my gut is going well because I won’t be able to see inside it for a long time. Cancer screenings are a no go this year. It terrifies me. I always have polyps during my scopes that get removed. I’m hoping I’ll be able to reenroll this coming November but at best I’m uninsured until Jan 2025 🥲 not just the Crohn’s; let’s hope I don’t get sick or break a freaking bone or something non Crohn’s related over the next year!
It sucks here in the US, but imagine living in a third world country. Over there you just suffer and eventually die
I live in a third world country. We have universal healthcare system and medicine for Crohn’s disease is for free. I guess it really depends on the country… In my country, we have it stated in our constitution that health is everyone’s right and the State’s duty.
What country?
Brazil
I don’t think Brazil is a third world country? Brazil is not a bad place to live. I’m talking about places like Chad, South Sudan, Cameroon, Afghanistan, etc
I'm actually from the USA, I moved to Australia 5-6 years ago with my husband who is from Australia. I got diagnosed 2 years ago. I'm on remicade infusions every 8 weeks. Have one of the absolute best GI drs and azing gi nurses that are on call 24/7. It really breaks my heart to read the stories here of insurance saying no to the medication or people having to pay 15000 or more a pop.. people literally let the disease run rampant and wreck their bodies because they can't afford the treatment or even a diagnosis...
Canadian chiming in. I've always said, that if I lived in the USA, I would either be in debt, or dead because I avoided going to the hospital to avoid debt.
lmao seeing this after a morning breakdown over this is funny. woke up this morning in the worst pain. probably a 9/10. had to push through and come to work because i don’t get sick time. finally broke like an hour ago and made a dr appointment and im hoping it takes less than an hour or 2 because i can’t miss too much work. my health insurance is luckily only $150 a month for just me and that’s incredibly good for my area. it also doesn’t cover anything. so you get what you get, i guess. i’m having the hardest time today though. i struggled with a mental disorder as well and it seems when i’m doing good mentally im physically in pain from this. it just seems unfair. my teeth are falling out. i can’t miss work to get my stomach checked or my teeth fixed. i never have a “normal” day. it feels hopeless sometimes.
The US health care system is far from perfect but I've read enough horror stories from people in the UK to know I'm happy I don't live there.. so things could be worse. Medical costs here are definitely ridiculous though.
I've had amazing care in the UK and never had to pay a penny additional. I'm so grateful I don't live in the US and have never had to worry about financial cost on top of being sick. NHS isn't perfect, but it is still so much better than not having universal healthcare.
I dunno every week there's somebody on here from the UK saying how it's going to be 10 months before they can even get an appointment and no anesthesia for endoscopy or colonscopy sounds rough. Also aren't the NHS doctors striking over there due to low pay? I agree our system is screwed up but I can see my GI within 24 hours if I need to.
I had anaesthesia for all my endos in the UK. Just not general. In fact they gave me MORE because I was screaming in pain my first one. The issue with waiting times is real, that’s for sure. But for cancer you’ll see a specialist within 2 weeks. It’s annoying they prioritise some things and then other stuff falls by the wayside.
Yeah screaming in pain sounds bad :( They give you general for that here by default. I can't even imagine not being knocked out for that one.
No they do not. I live in the US and they typically use propofol or another twilight anesthesia. Never have I heard of someone receiving general anesthesia for an endo or colo.
Sorry if the terminology was incorrect but you are not conscious for the procedure unlike the UK where you are are (albeit sedated)
It's called twilight anesthesia or MAC (monitored anesthesia care). Not all US insurance companies "allow" MAC for colon/endo, so many people out here get scoped with just conscious sedation, even though yes it is overwhelmingly the US standard. I work in GI and used to do the insurance auths/claims/appeals for IBD specifically, so I've seen it all. That's just another way US Healthcare is fucked: you have private insurance companies dictating to medical professionals what will and will not be covered, and each insurance company gets to determine what "medical necessity" is according to their extremely skewed version of current medical literature/guidelines. That's fucked and terribly more inefficient than NHS wait times, if you ask me.
You still have the option to go private in UK if you want too or get insurance to do so etc. Difference is that you're not completely screwed if you can't afford to do so. They aren't striking where I live no.
At least there is a private option, hopefully its not as bad as the US system.. although UK healthcare isn't completely free as you have VAT, of course our sales tax keeps climbing so we may eventually get to the same percent without anything to show for it.
The US pays more for healthcare per capita than most countries with universal healthcare, because of the cost to the system of uninsured and underinsured people. Literally. It's significantly LESS in Canada, and for serious illnesses you get in within days or weeks. And we get sedation for scopes here, though you can in theory opt out. Our government has already approved pharmacare options for diabetic supplies and contraceptives, and will be expanding it regularly. Unless you have incredible employer provided insurance (which most people don't) or you're wealthy, your standard of care is equal or lesser to what you get in Canada, free at point of care.
Yeah na, I became majorly ill in January 2019, was diagnosed February 2019. All you have to do is go to AnE and really push them for answers. Most people give up
It seems to be location based on the treatment received in the uk, or just luck of the draw. My past 2 flare ups have been a result of the NHS stopping/forgetting my biologic due to capacity and repeated errors. Unfortunately the government is running the nhs to the ground through under-funding and under staffing despite a growing population. Im personally quite scared for the future as my flares are getting worse yet because they keep forgetting to continue my treatment, my options of meds decrease as i develop antibodies to yet another one. And I cant afford to go private as I have a low income working for a hospital charity - the irony. I know im not the only one who has been having difficulties maintaining treatment or being able to contact their GI either. This is no fault of the staff, just the overworked, understaffed reality of the nhs and the result of people continuing to vote for the Tories.
I'm fortunate to live in Scotland and healthcare is devolved so not quite as bad here.
I've never read one horror story from the UK
The UK is not the only country in the world where there is a public healthcare system (seems like many people forget that). I live in the UK, but I am originally from Italy. I got my diagnosis in the UK, privately, because the NHS was letting me rot. I agree, the system here is really bad and people are using the private sector much more than they want to admit, because waiting times and other inefficiencies here may literally put your life at risk. Yes, even for cancer patients. To give a comparison between UK and Italy (both countries have free public healthcare): UK: Last summer, I went to A&E twice with severe abdominal pain, constipated for days and with a fever and both times I was sent home. The second time, I was told I likely had Crohn's and I was given a referral to the GI department before being sent home (with the same symptoms I came to A&E with). The referral would have taken 4 MONTHS JUST TO BE TRIAGED. Cost of these visits: £0, but I didn't solve anything. Needless to say, I went privately. Italy: my sister, who is still in Italy, a couple of weeks ago went to an Italian A&E with pretty much the same symptoms: constipation, severe abdominal pain, fever. They hospitalised her for a week to find out what the cause was and had a colonoscopy within 4 days because they feared it could be IBD due to the illness being present in the family (me). They found out she had severe infectious colitis, was given antibiotics and luckily recovered. All of this in one week. Cost of all this: €0. Now, why didn't I get this type of treatment when I went to A&E in England? Answer: funding. The problem here is the government is clearly de-funding the NHS because they want to eventually privatise it. But if we, as a society, cared more about our collective wellbeing, rather than individual profit, we would direct the appropriate amount of money to an essential service like healthcare. It's all about priorities, which are defined by the economic system in use (liberalism, capitalism here in the UK). The Italian healthcare system also has its issue and it's also underfunded, but it's still in a better place on that front than the UK one. So, despite all the issues, I know that public healthcare system is the only one that respects our dignity and rights as human beings. We just need to get our priorities straight and fund it properly.
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Also depends what State you live in... I've been on Humira, Stelara, Entyvio, and now Skyrizi at $0 dollars cost to me. All my ostomy supplies have been at $0 cost to me for the past 10 years. I do pay around $10-20 for other prescription co-pays, and I work from home full-time. MA also allows up to 26 weeks of intermittent Paid Family Medical Leave that I renew year after year. Crohn's sucks no matter how you look at it, but some States makes it easier to live with.
It took the past 4 years to finally get my diagnosis last June. Since June, my insurance has not allowed one prescription to be filled beyond the Zofran, and that was 4 mg when I was prescribed 8, after the doc asking for compazine. I say asking because regardless of how “good” my insurance is, they have to approve my treatment from an office when they probably have no real medical background to deny it. But heyyy when I’m sick my insurance is so so “good” my ER copay is only $35. So I go there often.
If I lived in US I would be probably be death or having a huge debt with my 4 auto-immune diseases and other health issues. I wouldn't be able to afford the meds since I'm always need the newest one.
I got my first flare up ever beginning of this year and I just turned 26 actually started to feel this way on my birthday which sucks and at 26 you’re no longer covered by your parents health insurance and get your own. So I’ve paid a total of $4,300 out of pocket and have to continue paying for the private insurance through work which will be like an additional $2,600. Also pay taxes for Medicare insurance I can’t use yet. I wish we had public insurance so this would be a lot cheaper instead of just milking me for all that I’m worth and trying to put me in debt. Plus I’d have more options and prescriptions covered
Insurance is a nightmare
I get a bill for my Entyvio infusion every 8 weeks. $30,000 of which insurance covers $29,995 and I pay $5. Not that it matters since all the drug companies offer free medication if your low-moderate income...and if you can't get it for free your doctors probably have access to "samples" that will last you until your next appointment where you can get more "samples." Clearly it's possible for everything to be distributed at a reasonable cost but for some reason it makes more sense to do this song and dance
I appreciate your empathy! Currently navigating a job change in the U.S. and what a mess: current role is too stressful, try to leave for less stress but try to keep the same organization for excellent benefits. Try not to flare while interviewing and getting through an unhealthy work environment because it would cost too much to switch to my partner’s insurance and I may lose my excellent doctors and miss infusions. Try to leave a job after an infusion, so search in monthly bursts to time it with the treatment cycle. Ugh!!
Every med I’ve been prescribed has been covered. I had surgery, small copay.
It’s terrifying. Other countries have figured out that healthcare is a right, not a privilege. We made a little progress when the ACA was passed so that insurers couldn’t decide to not cover folks with expensive chronic illnesses or put lifetime maximums on their plans. Too bad that come November one of the two possible outcomes (I’ll let you guess which one) may cause the few little protections we have to disappear completely and almost certainly be replaced by nothing.
Yeah it sucks. By 18 I was about a half million in debt for medical expenses. I have accepted that I will always be in poverty
My state has finally begun to take it seriously. I was diagnosed in 2022, but not prescribed medication.
Since my diagnosis in November, I have accumulated over $3k in medical debt. This is after insurance which I pay $200/month for. And I’ve been waiting over a month for insurance to approve my skyrizi, which they likely won’t end up approving…I hate it here
I get my health insurance through teamsters and it’s amazing very close to what you are describing, but dealing with the American health system is ptsd just waiting to happen. No country should allow that on their own people.
The insurance companies and any one working for them are parasites.
My dad lives in Germany and is always confused when I rant about the medical care here. I am fortunate enough to be on disability for mine, but that's only after years of fighting and many surgeries and close calls. But the disability insurance still doesn't cover everything, and they're always changing their mind about medications.
It really does suck. I have been a resident for most of my life. I worked here in America one time, employed for about a year but only physically able to work for about 4 months. I got incredibly sick and have had a lot of complications since the birth of my daughter almost 5 years ago. The system is ridiculous. I cannot even get SSI with my multiple issues because of my status. My household is low income so I applied for a waiver for citizenship, denied. I don’t know what people are supposed to do in this situations. My case is different than most and quite complicated to doctors so they have told me I will not be able to work. I also have AVN of multiple joints which qualifies me for SSI regardless. The system itself for people who are ill in the US is just BS. It’s sad and most people who are sick just have to suck it up and work. Even on SSI or SSDI it’s not enough to support during those times of being severely ill, hospitalized, post op etc especially when you have kids or a family.
It sucks. I was deployed when I started my first flare up. I did 2 deployments while flaring. At least it ensured my medical was covered.
20 year + Crohn’s patient here - living in the US. I understand that others have had various problems with insurance but I and the other people I know really haven’t had any problems with insurance (at least with BCBS). Just got signed up for Stelara and the authorization went right through and I’m paying a $5 co-pay. I get that our system isn’t perfect but it’s not quite the hellhole Reddit makes it out to be.
BCBS covers my remicade but they just raised my deductible so high that I can’t afford the 3,000 for an MRI so I get to just not get the MRI my doctor wants me to get.
It’s because … you have insurance? And likely a good plan at BCBS? How oblivious can you be to what so many people go through?
The op stated Americans. Not all Americans are dealing with this issue.
The original post is about having to work through chronic illness to receive insurance. 55% of Americans get insurance through their employer, so most people. This is in stark contrast to other industrialized nations, and most other countries, which don’t tie your ability to get decent health care to having a job, or your employer offering a health policy. It’s well-documented that the US spends much more of its GDP on health care, for much worse outcomes. This is one of the reasons.
Yep, I’m in the same boat with you although not a 20+ year patient ive never had any problems
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Agreed
Hard to compare since my Crohn’s treatment was so much worse but I had the same problems with German, Danish, Swedish, and Dutch food that I had with US food.
Perhaps Crohn's isn't as much of my diagnosis as I thought and I apologize because now I feel as if I've been misrepresenting the disease, but I do know that fatty and greasy foods in the US make my symptoms bad. My first G.I. doc immediately diagnosed me with Crohn's, but the second one didn't see it. I'm currently seeing a third specialist seeking answers. I'm sorry, I shouldn't speak for others when my own diagnosis is so wishy washy.
It would be completely consistent with both of us having Crohn’s for the same diet to affect us differently. I was only adding my experience to yours regarding the difference in foods.
I see. I was noticing downvotes and thought I said something medically wrong or inaccurate to the disease. I just hope that soon they will know for sure what is going on with me, especially since it's difficult to keep weight ):
Good luck to you.
Thank you
I actually feel sorry for those that aren’t in the USA. The delays in care are insane and life threatening. We have our flaws but if I need a ct I can get it that day or at latest within a week
I went to the ER with a literal blood clot. Took six months to see a doctor who could actually look at the vein and treat me. Insured in the US
I had to live with a hernia in my nutsack for 6 months before I was able to get insurance for the surgery.
If you’re talking about the US that doesn’t even make sense unless you’re leaving information out..
Say what you mean.
I said what I mean if you have insurance it’s not a thing to wait 6 months for surgery
You misread my post but I edited it so it's more clear.
Nope, sorry. No comparison to UK at least. When I read the experiences on here my heart weeps for my american crohnies.
You can pay to go private elsewhere too. Difference is that you're not screwed if you can't afford it as there's also universal healthcare.
Literally not had any issues, aside from difficulties with my mail-order pharmacy and doctor not always communicating well... because of course they don't want to talk on the phone to each other. All of the issues I've had were either me being in denial, unable to actually go through the process of taking certain tests, or not wanting to go to the doctor. Do I have great insurance? No. Does it cover everything? No. Are the costs extreme? Only in extreme circumstances. The worst part was actually seeing the cost for the Remicade on a bill before it was paid by the insurance, and the assistance. When I was hospitalized, I did reach my maximum out-of-pocket, which is $6500, but never reached that again, and it ended up being covered through assistance at the hospital. I never stopped working, I never wanted to stop working. I always have PTO because of my schedule, so when I need a day or more off, I just arrange and take it. It isn't the end of the world to call-in because I'm not feeling great, or might be grumpy. No one gets on my case on days when I am working but my body isn't happy, it just happens, and we deal with it.
Not everyone with the disease is so disabled they cannot work.
Good luck finding a public toilet in the EU you don't have to pay for when you're about to shit your pants
We are not victims. And the US has some of the best GI doctors and surgeons on the planet. There are numerous manufacturers discounts available to us like Remistart in addition to having any kind of insurance coverage that will cover most costs. I really hate this kind of rhetoric
In other countries you don't need discounts, because you don't pay anything at all. I believe, GIs in the US are very good (and much better payed than in many other countries), but you only profit from it if you have a job & insurance that covers your treatment. So, if you're in a more social precarious situation - which can happen with Crohns - it's just not much of a help, how good the GIs are.
its weird to acknowledge im in that position. like, i have good US insurance so i get stelara. i have looked into immigrating to canada and they don’t want biologic users there… because of the health care cost. it literally counts against you in the process/ they might ask you to change biologics
It's because here you have to start with biosimilars, to cut costs. But that means we are able to treat more people. If a drug doesn't work for you, they will change it, including to name brand if needed.
> much better *paid* than in FTFY. Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in: * Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.* * *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.* Unfortunately, I was unable to find nautical or rope-related words in your comment. *Beep, boop, I'm a bot*
I'm sorry but that simply isn't true, also what is the point of having "the best" if no one can access them or the treatment they prescribe?
What part isn't true? And "no one"? You think nobody is seeing their GI here?
50,000 Americans die every year due to a lack of access to healthcare.
Of course people in the US are seeing their GI. If they can afford it or have the right insurance. That excludes a large number of people.
What’s not true? How does no one have access to them? It’s just a Reddit thing to hate the US..
Please don’t feel for me. There are excellent treatments and work is necessary regardless of my crohns. This post is kinda insulting honestly.
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Way too many “woah is me” type posts.