Home Forums Melanoma Diagnosis: Stage IV Insurance question

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  • #21563
    keesvp
    Participant

    As some of you know, my wife Mariëtte is in the Merck anti PD-1 trial at UCSF. She has been at UCSF with her Melanoma for over 9 year.

    Begin this year I was laid off and have been paying Cobra since then ($ 3800 per month!). In between I had jobs without benefits, so just kept paying.

    Now I am starting a new job in a week, and just found out their only insurance possibility is Kaiser Permanente. Does anybody have any knowledge/experience what this will mean for her situation. It is unthinkable that she will have to leave the UCSF program, but I have no idea what an HMO’s strategy is going to be.

    Kees

    #62435
    Catherine Poole
    Keymaster

    I would get ready to do battle. I don’t know what their policies are but I expect there might be a struggle. Since she is getting the drug under clinical trial aren’t most of the expenses covered by the institution and pharma? So I would think you should go to the trial coordinator first and explain the situation and find out if other patients have Kaiser too. Let us know how things go..

    #62436
    keesvp
    Participant

    Thanks Catherine,

    Yes, the drugs charges are paid by the trial. But not recurring costs like the regular scans. That’s why I kept paying the Cobra, because the costs still would be higher. We will get in touch with the coordinator Monday to find out if she knows anything. I will report.

    #62437
    tasjacques
    Participant

    Hi Kees,

    We are Kaiser members and it has been working for us. We are located in Hawaii, and here they don’t care if we participate in anti PD 1 trial, which my husband is in UCLA.

    We were with Kaiser since second recurrence (Dec 2012), we did Zel and then Ipi, both failed. We were able to enter a PD 1 trial in UCLA. Our biggest worries was for them to pay scans, blood work, or any other medical treatment we needed while on PD 1 trial. Kaiser Hawaii accepted to continue to cover with regular medical care which entail regular scans (my husband gets CT and MRI), medication (mostly pain medication), and any other appointments with the Kaiser oncologist.

    So during this trial, he goes to UCLA get checked by docs, does blood work and gets the infusion all covered by MERCK, including biopsies. For us, he needs to do scans every 12 weeks and this Kaiser covers, we get a copy of the CT & MRI bring it to UCLA for them to read and records.

    Our expenses as of right now are the air fairs, co-payments for office visits and meds.

    Our UCLA coordinator and the doc were ok with this arrangement so I hope your trial allows that and also Kaiser at SF also allows it.

    Let me know if you need more info, so happy your wife is doing PD 1!!! It is working amazingly with my husband :)

    take care,

    Elenise

    #62438
    keesvp
    Participant

    Thanks very much Elenise, that’s great information. I don’t envy your frequent flyer miles. :)

    #62439
    tasjacques
    Participant

    Yeah definitely not a way to be a frequent flyer, :P 😯 but we are happy that the drug is working.

    Good luck with Kaiser!

    Elenise

    #62440
    tasjacques
    Participant

    Hi Kees,

    Just wondering how it went with Kaiser?

    Elenise

    #62441
    keesvp
    Participant

    Hi Elenise,

    Great timing! Just today Mariëtte had her IV at Ucsf, and we are with Kaiser since the first of the month. It was short notice to pick a physician, make appointments with her and an oncologist and go through the outside referral process, but it looks like it all worked out, just in time. Thank you so much for your support! Is everything still working out for your husband?

    Best wishes

    Kees

    #62442
    tasjacques
    Participant

    Wow talking about timing :)

    What trial is she in? I am so happy she started treatment.

    Jacques is doing great! First scans which were end of August showed about 70% reduction!!!!!! and UCLA did not believe it, so they redid the scans after 4 weeks and still shows reduction :) We are so happy. He is getting better and better each day. He does have joint pain here and there, which what bothers him the most but overall unbelievable results.

    Hope for you and Mariette the times get better and she starts feeling the difference as well.

    Keep us updated how she does.

    Elenise

    #62443
    keesvp
    Participant

    Wow, great. Obviously he’s a complete responder.

    Mariëtte actually is already on the trial for one and a half year. She’s partly responding, in the sense that she’s mostly stable. No reduction, but also no growth. She also has the joint problems, and gets fatigued very often. But otherwise we’re very happy with the trial.

    Kees

    #62444
    tasjacques
    Participant

    Hi Kees,

    That is so great that Mariette has been stable for one and a half year, gives tons of relieve to know that maybe Jacques will be also for a long time responding :)

    As for a complete responder, I dunno yet, since we just started this past June, and we have had only one scans (well two a month apart), we do hope he continues to respond.

    I wanted to ask you if Mariette has experienced loss of pigmentation or depigmentation (Vitiligo)?

    Have a wonderful weekend!

    Elenise

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