Negotiating with a hospital for immunotherapy

[u/cr1merobot]

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

[u/Zetavu]

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.

[u/cr1merobot → u/Zetavu]

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.

[u/SnickerSnack492 → u/cr1merobot]

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

[u/cr1merobot → u/SnickerSnack492]

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.