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Clinical Trials Question
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Clinical Trials Question

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  • Post
    • August 2, 2017 at 10:15 pm
    smiller
    Participant

       Questions about Clinical Trials:

        Are the meds given in trials no charge?

        Are the labs and doctor visits given no charge and what about any scans the patient may need?

        Thanks for any information anyone can give!

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    • Replies
        • August 2, 2017 at 11:04 pm
        jennunicorn
        Participant

          Anything that is standard of care is what you have to pay for, with your insurance of course. So, doc appointments, scans, blood labs, all that stuff you will still pay for. Experimental drugs are free. Drugs that are FDA approved and a part of standard of care currently but may be in a combination with an experimental drug will still have to be paid by you.

            • August 2, 2017 at 11:58 pm
            mrsaxde
            Participant

              That's what I thought, too. But you have to read the financial document you sign carefully. In the trial I'm in, I'm getting an anti-LAG-3 experimental drug in combination with Opdivo. But the financial responsibility form I signed said that BMS pays for both of them.

            • August 2, 2017 at 11:26 pm
            geriakt
            Participant

              Not completely true. Everything is negotiable. On my trial BMS pays for all my labs, monthly doctor visits, and all my CT scans. Then trial needs all the data from the blood work and scans. Without the data and info the trial is worthless to BMS. I was told I needed to pay for my CT scans at $19000 each every 12 weeks and refused. I told them I could go to an image center for $2200 each. The hospital said they wanted the scans taken on the same machine so I said you pay for it or charge a reasonable amount. The hospital consulted BMS and said the scans and blood work was part of the protocol so BMS would pay for it. 

              I have not paid a hospital Bill related to my trial treatment in 2 years. Stick you your guns or the hospital will try to make a profit off you. 

              Tom 

                • August 2, 2017 at 11:56 pm
                mrsaxde
                Participant

                  Your experience is similar to mine. I'm in the anti-LAG-3/Opdivo combo trial. The financial documents I signed  said that people in the arm I'm in not only get the experimental med free, BMS is also paying for the Opdivo. My insurance is only billed for the costs associated with the infusions, plus, as you said, other standard of care items.

                  I have to ask…. $19,000 each for a CT scan? What hospital is charging that amount? In the outrageous world of medical expenses, I can't recall ever seeing a CT at a hospital that was more than around $3,000-4,000 and the insurance rate was much lower than that. I've had PET/CTs that only carried a price of around $6,000.

                  • August 3, 2017 at 5:09 pm
                  kaileetutt
                  Participant

                    I've also heard that most trials do have a traveling/living expense cap. It is worth asking if you have to stay in a hotel or travel to & from. 

                    • August 4, 2017 at 2:11 pm
                    geriakt
                    Participant

                      My trial paid travel expenses for distances over 75 mile one way. My travel is 65 miles one way. I am grateful to be granted to be on the trial so I did not push the travel. BMS has invested about $400,000 in treatment for me that I hope will help others and I am grateful to BMS. 

                      • August 4, 2017 at 2:07 pm
                      geriakt
                      Participant

                        The hospital that trys to charge me $19,000 per full body CT Scan is UFCancer Center at ORMC Orlando Florida. To be clear it is a full body scan of brain, neck, chest, and abdominal. Yes my PET scan at Florida Hospital charged less.

                        • August 4, 2017 at 2:37 pm
                        mrsaxde
                        Participant

                          I"m glad you pushed back against a charge like that. Even for what you describe that still sounds outrageous.

                          I just had to look up what Johns Hopkins billed my insurance for the last CT scan I had there. I don't get the extensive scans you get. Mine are just from the neck to the groin, and they consider that two scans for billing purposes. JH billed Blue Cross $787.59 for one, $484.44 for the other. The same sort of test, just without the head and neck scan. It's just insane how medical care is priced in this country.

                        • August 3, 2017 at 9:27 pm
                        Bubbles
                        Participant

                          The answer is:  It REALLY, REALLY varies!!!  I was in a BMS nivo trial from 2010 to 2013.  BMS paid ONLY for the meds and "research labs".  This means I had to get myself from Chattanooga to Tampa on my own.  I (and my insurance covered everything else…which means I had to pay all deductibles and co-pays) had to pay for the scans that the trial required every 3 months, all other labs, the doctor visit, the time in the infusion clinic, as well as all the supplies, on my own.  So….ask lots of questions.  Ask for help covering such costs if they are not covered and you need it! – I wish you well.  c

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