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Time for an Ulcerative Colitis and medical billing update! Paging @Throwaway05 and @self_made_human.
I’ve mentioned elsewhere that I have been diagnosed with Ulcerative Colitis, a couple of years back, but that finding out in advance how much treatment was going to cost was nearly impossible. My colonoscopy to diagnose the disease cost me about 1500 dollars out of pocket. My doctor then put me on Velsipity, which was not covered by my insurance, but did have 2 years supply covered free by the drug company. My drug company did in fact approve the drug and add it to their formulary list, a couple of months ago. Just in time for my doctor to decide it wasn’t actually really stopping the progression of my disease, so we had to look for another drug to try. So it goes.
But before that I needed another colonoscopy! Again, no one could tell me how much it was going to cost me. It ended up costing me about 2,900 dollars out of pocket this time. Why the difference? Well because the first one was coded to my insurance company as routine, while this one is diagnostic. Nothing was different about the procedure at all. Diagnosis? My Ulcerative Colitis has progressed from mild to moderate to moderate to severe. So, my doctor decided we were going to try Tremfya, a biologic medication.
If you anticipated my next question was “How much is this going to cost me?” Then have a cookie or three! And if you correctly anticipated the answer was “I don’t know” then take the whole box. I can’t eat them now anyway. Tremfya is on my insurance companies list, but it has a whole bunch of caveats attached to it. They only cover so many doses; they only cover it from certain pharmacies they only cover it after you’ve tried other medications.
The drug manufacturer has a payment program, which may help people cover the out-of-pocket costs. Up to 20,000 dollars a year. Which sounds pretty helpful! But there is a twist. For Tremfya, your first 3 loading doses need to be delivered by slow infusion, which means you either need to go to a medical facility, or have a nurse come out and hook you up to a drip. Once again this will have a cost attached to it separate from the cost of the drug itself. I’m told having a nurse come out is by far the cheaper option. So, I pick that and see the Tremfya program may also cover up to 2,000 dollars for infusion costs per annum as well.
Note the important words there, however. May. It is not guaranteed, and the drug company can stop it at any point for any reason. So, I talked to the specialist pharmacy that is contracted to come out and do my infusion. How much will I have to pay? If you guessed the answer was “I don’t know” then you are to my shock, wrong for once. They said 40 dollars per infusion. Which sounds downright reasonable!
So, I go ahead and book the first treatment. The nurse comes, she is very nice, gets a vein on the first try and we spend 2 hours filling out multitudes of forms. I don’t immediately die or go into anaphylactic shock as some of the dire warnings on the medication indicate so I’ll count that as a victory. But now the time has come to pay the piper. I log into my insurance portal a couple of days later and I see the charges for the drug and infusion costs are pending. I wait a few more days with bated breath and then I am both unhappy and happy. For my cost for the drug itself was 0 dollars!
Let’s go back and look at the breakdown. A single dose of the drug was billed to my insurance company for 17,000 dollars. Normally I’d have to pay 20%. But my insurance company very kindly registered me for the Tremfya manufacturer program and that reduced my OOP to zero. Great. But that is 3400 dollars from that 20,000 dollar pot, for one dose. So let's put a pin in that.
Now let’s revisit the infusion cost. This is not for the drug, this is for the cost of having a nurse come out and administer it (and I was told it is much cheaper than having to go to a medical facility). Just close your eyes for a moment and guess how much the initial bill is. Got it?
Well, it is 35,000 dollars. My insurance company negotiated a discount to only 15,000 dollars. So I am billed around 3000 dollars out of pocket. Except the pharmacy had said after checking with my insurance I would only have to pay 40 dollars per infusion. So what gives? Well we have to go back to the OOP maximum! Because the insurance company administered the Tremfya program and got the money from them directly, the 3,400 odd dollars for that didn’t go towards my OOP maximum, because I didn't pay anything. So I am on the hook for the co-insurance here, not just the 40 dollar co-pay.
So, I looked up this on some UC forums and discovered this is indeed a thing. Many people have to force their insurance company to let them apply for the program on their own, because if you do that, it counts towards your OOP maximum. As you are billed, pay the balance and then get re-imbursed. So, while it looks like the insurance company is trying to help you, it actually screws you over. I call my insurance company and after two escalations and some back and forth they agree to apply the amount to my OOP maximum. This plus the previous colonoscopy costs means I now don't have to pay co-insurance costs for the rest of the year. Just co-pays.
I guess I'll worry about next year when I get there though at least I'll just be on 17,000 dollars a dose pen injectors by then. I'll hit my OOP max 3 doses in, which should be covered by the Tremfya fund.
Also don’t get me started on what the difference is between Annual Maximum Out-of-Pocket and Total Yearly Out-of-Pocket Maximum which are two entirely different figures and are very unclear as to the difference.
The Tremfya does appear to be working, for anyone in a similar situation. Although improvement in UC is measured in months and half-steps so we will see where I am in a while. Velsiptity did nothing but I also had no major side effects.
I'm not sure the NHS is better than the US system, but it's certainly less stressful and complicated from the point of view of the end user. Slower and less efficient though most likely.
Not to derail this but I had thought you had Crohn's, not UC. Of the two, UC seems preferable (in that it does not run the length of the digestive tract) but of course both seem extremely uncomfortable. I'm continually amazed at the US healthcare system and I think one of the many benefits of living in Japan is this kind of situation. I could probably get a colonoscopy in less than a week if I needed to, and would be charged a few hundred bucks at most after insurance. In any case you have my sympathies.
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Sorry about that man. Don't have time for much of a comment here but I also have severe ulcerative colitis (have had it for years) and bad insurance.
Semaglutide has been quite effective for treating me. It's better than Humira (my previous drug), and its total price is cheaper for me than my Humira copay. Maybe it's placebo, I don't know, but it's working.
Huh, i'll look into that, thanks! Humira is on my list if Trenfya fails as it stands, but which drug works for which person seems very scattershot.
I appreciate you taking the time to reply!
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Congrats that it seems to be helping.
I am on vacation and absolutely obliterated right now but I'll respond because I don't want to forget about this.
U.S. system is bonkers, it has its advantages but it is still bonkers. Lots of wealthy companies invest in not paying or making things as confusing as possible.
For the most part doctors are employed cogs who have no control, authority, or influence (these days). Usually your contract gives up your right to be in charge of coding and shit. We have enough to do unfortunately and limited ability to help so we don't know and can't do much. Understanding billing is a full time job.
I support attempts to fix or simplify things as long as you don't throw the baby out with the bath water but 90% the first step is cut doctor salaries and I'm out.
Thanks for responding! I wouldn't support cutting doctors salaries I don't think. Not that I am in charge of that sort of thing anyway! I also don't think it is the doctors job to be able to know all the costs. But I think it should probably be someone's job (probably at the insurance companies end) so that patients have transparency up front. It's hard to know what treatment to choose without knowledge of the costs as well as the benefits.
Enjoy your vacation!
Health systems do sometimes try and figure this stuff out and help patients but its complicated because insurance companies make a full time job out of causing issues here - one of the classic is the way that COPD/Asthma inhalers change every year because insurance companies change what they will pay all the time.
The insurance company has no desire to clear things up with their staff for the obvious reasons.
With respect to diseases like this you will absolutely get the best possible care in the U.S. because no socialized system will spend the money involved. It will just cost you an arm and a leg in the process.
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Firstly, my condolences, UC is a shitty disease (the pun is not entirely intended).
If you expect actual advice, my ability to help is rather limited. Maybe a year or so back, when this was a topic I'd been branding into my brain, I could have told you something useful. As it is, some of the drugs you've mentioned are brand new, and unheard of in UK practice. I have very little reason to look at biologics, and trust me, the names are just as abstruse to me as they are to you.
Given what you've told me, it seems your doctor thinks the cheap/easy options like aminosalicylates or corticosteroids are no longer effective. I don't know how much of the impetus behind the additional colonoscopy's was to stage the disease and how much was to screen for or exclude colon cancer.
The NHS probably would have been simpler and easier. If I'm being thankful for the few benefits the system has, wrangling insurance is something I'm mercifully reprieved from worrying about. You would have had a harder time getting the specific biologic you're on, but I'm not sure how significant the differences are between them. We're not so backward that you wouldn't have had an equivalent at hand.
Have you considered the feasibility of going to Mexico for treatment? I'm talking out of my ass here, and I can't imagine it would be easy to go there on a regular basis. It may or may not be cheaper.
Oh not so much advice, just tagging you in on a kind of NHS related post. Colonoscopy is both as you said to stage the disease and because she worried about colon cancer, as UC increases the risk and I'm in my 50's and a meat eater.
Luckily while I am partially retired, I am reasonably well off so a few thousand dollars will not break my bank. Mainly I just dislike how up in the air everything is, as to what something will cost at least ballpark.
I'd say some of the burden the NHS takes off patients compared to the US it puts onto medical staff. And my brethren in Scotland are not exactly renowned for their physical or mental health so I am sure you have your hands full as it is.
Neither patients nor I have to worry about insurance, so that's a relief!
The NHS is well past its prime. I would say it's undergoing a slow-motion collapse. If you show up to the ER with a condition that is liable to kill you in a few minutes or hours, you'll probably be seen to very quickly. Everything else takes its sweet time. Something like a routine colonoscopy might take months to get an appointment for. The wait lists are just too long.
I'm not at an age where I have to worry about significant medical expenses, but later down the line, one must confront the choice between cheap/quick/quality. The NHS errs on the side of the former.
It does. Which is why in the US I had like 5 people call me (pharmacist, nurse, Drug company rep, pharmacy tech, doctors office) before my infusion, all that cost disease money over here is at least employing people!
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