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Trials costs covering
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Trials costs covering

› Forums › General Melanoma Community › Trials costs covering

  • Post
    • May 4, 2018 at 8:48 pm
    budeny
    Participant

      Hello, 

      Have a question about trials.

      Are they generally 100% covered by whoever initiate/sponsor them or there are still costs that should be covered by insurance?

      The reason I'm asking is that I'm getting offered one trial of pembro/ipi plus third drug combination and its only pembro cost that's covered by trial and everything else will go through insurance – ipi and scans. And can be even some extra procedures that will be completely on me like extra blood draws or biopsies..

      Thank you,

      Michael

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    • Replies
        • May 4, 2018 at 11:27 pm
        jennunicorn
        Participant

          Anything that would be considered standard of care already is something that is usually not covered by the trial but would get billed to your insurance as it would anyway, regular scans, blood work, already FDA approved treatment.  Anything investigative, like a new drug or procedure, would be covered by the trial. I have never been in a trial but from what I have read that is how it usually works.

          • May 5, 2018 at 1:08 am
          Bubbles
          Participant

            Trials and costs that are covered vary a good deal. It is something to be very clear about when you sign on the dotted line.  I was in a Phase 1 nivolumab trial from 2010 to 2013.  Initial paper work stated that there would be "No costs" to participants.  However, that evolved to mean that only the cost of the medicine and the "research labs" were actually "free".  All other labs, doctor visits, time in the infusion area, basic labs, IV tubing, and CT's of neck, chest, abd and pelvis with brain MRI's that were REQUIRED by the trial were not free.  They were billed to your respective insurance…but patients were responsible for deductibles, co-pays, etc.  They also made it very clear that the treatment of any side effects would not be covered by the pharmaceutical company nor the facility and none of the players could be held responsible.  Now…that was just my trial.  Other trials cover more than that because they need to attract patients.  Additionally, some facilties provide more resources to patients and families by way of transportation, etc.  So…there is no one answer to your question.  Ask specific questions of your clinical coordinator regarding what is free and what is billed and to whom, and what services the facility can assist with.  Wishing you my best.  Celeste

              • May 6, 2018 at 4:19 am
              TexMelanomex
              Participant

                Same with mine, PV-10 was free, Keytruda was not. All scans, visits, sugeries, etc billed to insurance. 

              • May 5, 2018 at 1:31 am
              bjeans
              Participant

                The research coordinator for my husband's trial has been doing this a long time for several different organizations, and she said she's seen major differences come and go over the years – but that it also depends on the study, of course. For my husband's trial, infusions, doctor visits, scans, labs, are all covered, and $50 a visit is put on a debit card they provide. He's getting nivo or nivo/ipi. 

                If treatment in a hospital for side effects was needed, it would go through our insurance, but if it was refused, the treatment center would step in – at least that's what we recall. 

                I assume the cost of pembro is a crazily high as other immunotherapy drugs, so hopefully that will help you out a good amount.

                Beth

                • May 5, 2018 at 2:46 am
                budeny
                Participant

                  Ok, I see. 

                  Does it even make much sense to join a trial nowadays? Any new drugs that looks more promising than current standard care options? 

                   

                   

                    • May 6, 2018 at 11:41 am
                    Bubbles
                    Participant

                      Here is a primer of standard care for melanoma that I put together: 

                       http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

                      You may be familiar with these treatment options already, or perhaps it will offer info to guide your decision.  Toward the end I note treatment options that are in trials that are promising…but not yet FDA approved.  Not that it is a complete list.

                      If you are a Stage IV patient who has not been treated by currently approved immunotherapy or targeted therapy, being in a trial just depends on whether you want to try to gain an additional component in a combo (though there are trials that simply include different ways of monitoring patients).  I would be hard pressed to choose something that did NOT include current therapies we KNOW work.  Melanoma world was very different in 2010, when none of the current treatments were FDA approved  

                      If you are a Stage IV patient who has failed current therapies, then certainly, looking to trials for treatment options can be critically important.

                      If you are a Stage III patient who wants to try to gain something more than current adjuvant meds…then again trials may be worthwhile.

                      Hope this helps. Celeste

                       

                      • May 7, 2018 at 8:40 pm
                      budeny
                      Participant

                        Thank you, Celeste! Yes, I was just diagnosed with stage IV couple weeks ago, didn't start any treatment yet. 

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