r/HospitalBills • u/cr1merobot • 12d ago
Negotiating with a hospital for immunotherapy
I am looking for advice preferably from people who have worked within hospital systems especially in the billing department.
I have POTS and I have tried a number of medications while working with a POTS specialist and none of them have worked. The POTS doctor was reluctant to suggest a potentially beneficial treatment (VIG immunotherapy) due to the cost. In his experience regardless of the impact that POTS is having on my functioning, my insurance company (BCBS carefirst) is almost certainly not going to pay for the treatment.
Whats worse is, according to the doctor the infusions are 14,000 USD per month for a year. Now i can technically afford it but I would hugely prefer not to pay 168k in a year to not feel bad anymore. I am currently waiting for one more week for a follow up from my doctor to get a referral for the treatment itself, at which time I will take the referral to an infusion center/hospital that can perform it.
now my question is this: Is there a way to leverage my ability to pay cash for this treatment into negotiating power with the hospital/infusion centers billing department? I would imagine instead of waiting months to get compensated by insurance or receiving partial payment, they would rather receiving cash for the service or even prepayment for a number of services at a discount.
Is this possible?
TL;DR: How do I get a discount on much needed immunotherapy? only suckers pay retail
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u/Zetavu 11d ago
Considering ivig is not FDA approved for POTS, and there are only case studies showing some benefits, I don't expect your doctor to sign off and insurance will definitely not cover. That said you can always try the drug manufacturer and they may offer payment assistance, specifically if they get to use you as a guinea pig. All depends on whether they are trying to push this as a POTS treatment or what liability it might open up.
And before you go complaining that I need to read the studies, I do not. Published studies are not the same as actual medical clearance that meets FDA requirements, they look for better than circumstantial info while we, wait for it, study something that has not been done before.
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u/cr1merobot 11d ago
you're response is vastly different than "it doesn't work" which is what I was replying to. I have a very good understanding of the difference between FDA approval and studies showing efficacy. Unfortunately medical science works within the same incentives that most things do. This treatment is very expensive and treats something that although it is life ruining for many people who suffer from it is actually not life threatening. Add on to those facts that something like 70% of all POTS diagnosis's have been made post COVID I imagine that global demand for POTS treatments is lagging behind both funded research and insurance approval.
secondly, my doctor (who is a POTS specialist) has already approved IVIG treatment for me based on my failure to respond to the 4 previous medications.
Lastly, no where in my post do I allude to insurance paying for it. I know they will not. I do not consider a for profit evil companies willingness to pay for my treatment any indication about the benefit of that treatment. For me, my life has been truly sincerely ruined by pots. If there is even a 50% chance of symptom relief, this is a worthy investment.
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u/SnickerSnack492 10d ago
It's probably much lower than 50% success rate
This study might interest you https://link.springer.com/article/10.1007/s10286-024-01020-9
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u/cr1merobot 9d ago
Thanks for linking this study. it seems like both groups responded positively to the treatment with around 50 percent of people who received IVIG responding positively. I think this is a fine gamble.
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u/No-Zookeepergame-301 12d ago
Yes you can, but insurance won't cover it because it doesn't work
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u/cr1merobot 12d ago
where did you get your medical degree genius. read the studies.
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u/Mymarathon 11d ago
Guidelines: Current expert consensus (e.g., Dysautonomia International, Heart Rhythm Society) does not recommend IVIG as routine therapy. It may be considered in rare cases where there’s strong evidence of autoimmune involvement and other treatments have failed.
Risks: IVIG is expensive, requires infusions, and can cause side effects like headaches, blood clots, kidney strain, or aseptic meningitis.
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u/cr1merobot 11d ago edited 11d ago
I have a co-occurring autoimmune disorder (celiac) as well as elevated IGE and IGA levels with no other explanation. As I explained in my post I have failed 4 medications over the last 6 months.
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u/No-Zookeepergame-301 11d ago
Your elevated ige and IGA levels are likely related to celiac, that's completely unrelated to POTS, which is not autoimmune mediated
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u/cr1merobot 11d ago
additionally none of what you said reinforces the statement that it "doesn't work"
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u/No-Zookeepergame-301 12d ago
Could you find me a randomized controlled trial that shows it works?
Maybe then insurance will cover it
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u/throwawayeverynight 11d ago
In all honesty, I worked in the infusion side of billing. Based on the information you give. You will only qualify for the self pay rate. Having cash on hand isn’t giving you powder, most insurance companies now days pay pretty quickly. Don’t be surprised if if the self pay isn’t a huge discount.
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u/voodoobunny999 10d ago
You do have some leverage, but no guarantees. Your best bet is to approach multiple facilities that can provide the service you require and essentially price shop. At some level, infusion centers and hospitals are businesses and a $100k+ is nothing to sneeze at. Obviously, most of the cost is in the therapeutic agent, as opposed to administration of the agent. If there’s enough of a markup in the cost, a facility might reduce that to ‘get your business’, particularly for cash. My TLDR point is in the first two sentences. Good luck! I know that having POTS taken seriously can be a chore and, without weighing in on the merits, I know it’s very real to you.
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u/cr1merobot 9d ago
I made this thread because I was originally curious about how much leverage a cash payment gives me, it seems like opinions differ. I appreciate your kind words, it has been a 2 ish year journey to understand why an otherwise healthy 32 year old gets tired while walking.
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u/FoldNaive5660 2d ago
You’re absolutely right to explore this — and yes, cash can definitely give you leverage, especially when you’re looking at $168K out of pocket.
Hospitals and infusion centers routinely discount for self-pay patients — sometimes 40–70% off. Insurance companies negotiate deep discounts, so if you’re offering cash (especially upfront), they know it’s a sure thing and often faster than waiting for insurance reimbursement.
Here’s how to approach it:
- Wait until you have the referral, then call the infusion center’s billing department directly and ask:“What is the self-pay or cash-pay rate for this treatment? And is there a discount if I pay upfront for multiple sessions?”Don’t use the word “retail” — they won’t like that — but talk like someone ready to make a deal.
- You can also ask to speak to someone in financial counseling or billing escalation, not just front desk.
- If the hospital gives you pushback, look into independent infusion centers — they often have more flexibility on pricing.
Also — you might want to check out MediLoop — they help people negotiate high-cost treatments and navigate insurance or billing issues. You upload your estimate or bill, and they can help challenge the pricing or get it reduced.
You’re smart to question the “retail” cost — it’s almost never what people actually pay. Keep pushing.
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u/[deleted] 12d ago
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