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September 6, 2013 at 11:46 pm #21563
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.
KeesSeptember 7, 2013 at 11:44 am #62435Catherine PooleKeymaster
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..September 7, 2013 at 2:28 pm #62436 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.September 7, 2013 at 11:22 pm #62437
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
EleniseSeptember 8, 2013 at 1:44 am #62438
Thanks very much Elenise, that’s great information. I don’t envy your frequent flyer miles.September 8, 2013 at 6:52 am #62439 Yeah definitely not a way to be a frequent flyer, 😯but we are happy that the drug is working.
Good luck with Kaiser!
EleniseOctober 9, 2013 at 3:05 am #62440
Just wondering how it went with Kaiser?
EleniseOctober 9, 2013 at 3:28 am #62441
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?
KeesOctober 9, 2013 at 3:42 am #62442
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.
EleniseOctober 9, 2013 at 5:25 am #62443
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.
KeesOctober 13, 2013 at 12:23 am #62444
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!
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