Clinical Trials: costs passed to the patient?

[pollymacchili]

Good morning to all in the best support group team ever! Anybody out there participating in a clinical trial research study and then getting billed for part of the cost of it???

After your insurance coverage has been claimed and paid to your provider, do any of you then get billed for any remaining costs? After the costs of "usual care" (as if you were not in a trial, just receiving "standard care" from your oncology team) are met, do you then get billed for a portion of the "research-related" costs of the study?

Examples of "Research Related costs" are procedures being done solely for research purposes, like more frequent scans, or in my case the costs of the "study drug," I take daily, more frequent or specialized imaging, special blood tests, etc. In the US, what is considered "research related" costs (vrs "usual" or "standard of care" costs) and who will pay for which must be spelled out specifically in the "Study Protocol" document and the "Consent to Participate" forms that you sign in order to participate.

During the 2 years PRIOR to my participation in a study , while I was receiving (obviously "Usual or "Standard of Care" ) my private health insurance (a "Medicare Advantage" policy,) covered 100% (yes, you heard it correctly...100% of the costs of my care. It is really great insurance and everyday I am grateful for my employer for extending this employment benefit to us retirees.

For the past 14 months I have been participating in a clinical research study comparing the efficacy of an oral SERD (a pill) versus Fluvestrant injections. Lets hope the pill version is proven to work well...who wouldn't rather take 4 (horse-size) capsules daily than have 2 shots a month...in your butt! 😒

BUT this comes at a cost! I've been being billed for a portion (almost $3,000 total to date) of costs related to the research study. I think this is a mistake and am trying to gather info about the experience of other clinical trial participants. Thank you in advance for sharing your experience and thoughts.

No need to share specifics like your provider, the sponsoring institution, your trial, and other identifying information...I do not intend to use any of that ...other than to determine if I am "the only one" out there incurring these kinds of costs.

As they say "misery loves company" although I am happy to report I am doing very well, my MBS is "Stable", no discernible side effects, I find myself fretting too much over this. ...it has become a bit of a quality of life issue!

I just have this nagging belief I am being unfairly targeted or mistakes have been made in the billing department or maybe I've been mislead or just did not understand the Consent terms fully or ???? But I am still being expected to bear these costs. 😬

Thanks for helping me to understand other's experiences so I can resolve this financial issue or "get over it, already, girl"!

[USIrishcolleen]

Pollymacchili,

I am sorry that I cannot assist you as I have never been part of a clinical trial. This sounds terribly FRUSTRATING. I would think that all of your expenses should be payed for in a clinical trial.

I hope that someone else here can help.

Best,

Colleen

[Nocillo]

My onc asked me to participate in a trial and when I read the paperwork that said I could be billed, I declined very quickly!

[Ntash01]

That seems unfair and surely a mistake!

On another note- are you joking about the horse size tablets? I’m on Faslodex and use to the jabs now, also I’m doing much better physically than I did on Ibrance.

I’m hoping to be a lucky one and stay on this treatment for a longish while and was so looking forward to swapping to the pill form in the future BUTT the size of the pills that you describe sound rather hideous 😳 I think I’d rather remain on the jabs!

How have you found them compared to shots if you don’t mind me asking?

Nx

[pollymacchili in reply to Ntash01]

yes I was joking, sorry. Some days there seems so little to joke about..the pills are actually capsules and the same size as my hypertension meds...easy to swallow! thanks for replying.

[Ntash01 in reply to pollymacchili]

🤣thank you polly…..I did initially chuckle and then thought… perhaps not!!!! You’re right… so little to joke about, I added a ‘butt’ joke/pun did you notice?

Take care & look after yourself

[pollymacchili in reply to Ntash01]

oh yes, I did get your little joke BUTT I was in the middle of a house project so I chuckled but did not reply! Butt I still enjoy everybody's posts!

[s_yenju]

I am on a trial and on a private insurance. Before my trial started, they help me to get financial clearance from my insurance company making sure my insurance will pay anything that pharmaceutical company won’t pay such as regular scans or doctor’s visits. However, before my trial started, I had already met my annual out of pocket amounts, so I don’t have to pay things anymore until the end of this year. I hope this answer your question.

[mplevine]

I am in trial and have submitted receipts for my out of pocket costs (parking) but have not yet been paid. The only other thing I have had to cover is my biweekly doctor visits which I would have to pay anyway. What trial are you on, I am on ARV 471.

[diamags]

You should not be billed for clinical trial expenses. Period.

[Bettybuckets]

OMG! I would much rather get 2 shots in the bum monthly than struggle with 4 horse pills daily. Boy I didn’t realize how hard the oral serds would be.

[pollymacchili in reply to Bettybuckets]

Oh Betty! I was joking..more like "little pony pills"!!! Actually same size as my blood pressure meds! 4 slippery capsules...Good luck with whatever you choose!

[Bettybuckets]

I am such a goof! Of course you were joking and now I am laughing!

[PJBinMI]

The horse size pills are giving me the giggles--thanks! When I was a kid, my youngest brother had to take large pills when he was recovering from pneumonia, and had a really hard time swallowing them. So my other brother and I came up with a plan to help mhim. We made little balls out of bread and we all practiced swallowing them and we kept increasing the size. Sibling competitiveness worked! LOL I've never had trouble swallowing large pills, thanks to my brothers!

[Hopeful4Cure]

Oh, no, YOU should not be charged a penny for a clinical trial anywhere in the world. I have been asked and live in Spain, however, in the info, it clearly states that the trial costs will be paid BY the company (pharma) AND that the study doctor doing the trial AND the hospital will be PAID for using us as test subjects. I would call the pharma doing the trial and find out why costs are being transfered to the patient AND the insurane company. One of the reasons I left the states is for this reason. Insurance companies control your health. They approve or disapprove on life saving everything. PLUS, I would ask for the detailed bill, which shows everything that you are being charged for. This is just like a visit to the doc or a hospital stay. They add things that were never done and charge $100 for an aspirin.

I remember getting a mammography many years ago. It would have cost me $300 out of pocket, but if I had insurance it was $700. That is why insurance companies need to GO and universal health care needs to be implemented in the US, which is the ONLY country in the world that does NOT have UHC. Insurance companies kill so many people because they do not approve life saving healthcare.

[pollymacchili in reply to Hopeful4Cure]

Amen to you! and thanks for the info...maybe I am not crazy or lazy after all! You are right on! Stay well.