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T-VEC treatment cost.

Forums Cutaneous Melanoma Community T-VEC treatment cost.

  • Post
    Roberto
    Participant
      Dear,

      I am the husband of a metastatic melanoma patient (from Brasil). The disease is located in her right leg (in transit metastases). There are several metastases, but no evidence of systemic disease.

      She has been through almost all existing treatment options such as Ipilimumab, Nivolumb, 2x Isolated Limb Perfusion, Combo (Ipilimumab + Nivolumab) 2x radiotherapy + Nivolmab, “TIL” clinical study. So the option are very restricted.

      Her Doctors in Brazil have recommended that she take the T-VEC (Talimogene laherparepvec) treatment because she is still diagnosed with melanoma with several cutaneous and subcutaneous mastastases in her leg. There are no systemic metastases.

      Unfortunately T-VEC treatment is not available in Brazil.

      Then, I contacted 3 hospitals in the USA (Moffitt, MD Anderson and MSKCC) to obtain a cost estimate for this treatment (self-pay). But none of the hospitals provided me with an estimate cost.

      Hospitals claimed they could only do this after my wife was exmined by their melnoma specialists. They argued that the price of this treatment would depend on the treatment plan and dosage prescribed by the hospital doctor. So, only after this consultation could they provide me with the cost estimate (medication, medical expenses etc).

      Obtaining a cost estimate for treatment would be extremely useful for us to be able to evaluate our financial ability to begin treatment, avoiding unnecessary travel expenses, appointments, exams etc..so that we do not receive the treatment.

      I know it is difficult to provide a cost estimate, but I would very much like to get an average of costs. There must be an average of costs.

      We would not like to take the risk and financial cost of traveling from Brazil to the US to consult a hospital specialist and in the end we find that we are unable to afford the treatment. Because of her illness, my wife has serious difficulty getting around. Besides, such a trip could only be done in business class, which would greatly increase the costs.

      So I would like to know if any of our brave friends from the forum could help me get an estimate of the financial costs (medication, outpatient and medical expenses) for T-VEC treatment (self-pay) with any hospital, medical clinic or doctor.

      As I said, before organizing such a trip I need to know if I will be able to afford the treatment.

      Kind Regards

      Roberto

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    • Replies
        Bubbles
        Participant
          This is old…but it is something: https://www.ajmc.com/newsroom/cost-questions-will-follow-the-approval-of-amgens-oncolytic-viral-treatment-imlygic

          I would contact Amgen – the company that makes the product and see what help they can given you. Could they help with cost? Could they ship to Brazil and allow your wife’s docs to administer? Are there locations in Europe that might be available to you?

          Here is a link to the Amgen Safety Net Foundation: http://www.amgensafetynetfoundation.com/

          There is this site for MD Anderson – but I doubt that it will be much more helpful than what you’ve already been told: https://www.mdanderson.org/patients-family/becoming-our-patient/international-center/financial-information-for-international-patients.html

          I don’t know how much these folks can offer as you are traveling into US from another country, but a call can’t hurt: https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/managing-costs/programs-and-resources-to-help-with-cancer-related-expenses.html

          Here is a list of additional cancer care resources: https://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources Many address flights to care. Not sure how or if they handle international issues, but I’d ask!!

          It is hard for us in the US to tell folks how much things costs. We have a rather mucked up system that expects all patients to have insurance from one source or another. The hospitals, clinics and even drug makers bargain “deals” with various insurance carriers. So our “Bill” for services will say – “Oh you owe a zillion dollars for your scan (or whatever). BUT, good news for you, your insurance carrier has paid us $2,000.00 so now you only owe us your part which is $500.00.” Understanding that I am making these numbers up (but barely) and we have to pay a monthly fee to the insurance company for the pleasure of having insurance!!! Anyhow, each company makes their own deals so there is no KNOWN straight cost across the board. AND….if you do NOT have insurance the docs, hospitals, labs etc – charge that poor soul the “zillion dollar price” with no ‘deal’. This probably makes no sense…but that is mostly because our system makes no sense and takes advantage of those without. Nevertheless, hopefully someone who has had T-VEC will chime in. But, in the meantime, I would certainly call some of the agencies from those lists as they do help a great many people attain needed care.

          Hope this helps. I wish you and your wife my best. Celeste

            Mark_DC
            Participant
              Dear Roberto,

              I have just checked my medical bills (or rather I asked my wife to find them and she, after finding the bills for all my other treament years, finally found the right ones)
              Putting aside the costs of the doctor, blood work, stuff like that (which are significant but smaller), my bills showed (approximately):

              TVEC list price 8,000 member price 5,500
              pembro list price 40,000 member price 25,000

              As Celeste says, I am not sure these are real numbers, they are so high, and was charged for this every two weeks.

              I stopped looking at my bills because when I received the first few they were so high I felt guilty – that so much money was being spent on me for a treatment that my insurance only half-approved (my oncologist was sure they would not approve; then after they approved they changed their mind just I was on my first or second treatment). All this made me depressed. (Even though now I think the numbers are not accurate). I had worked hard for the organization though which employs me, in the past, so this made me feel less guilty.

              On the plus side: in my case the TVEC helped make the pembro work; before that I had been on pembro alone and had steady but gradual progression in one site. it was not spreading but pembro was not getting rid of the tumour either. With TVEC the tumour grew then started slowly to shrink. Now it is much smaller or is scar tissue. So in your wife’s case it could well work. I have seen a paper reporting high response rates (bubbles may have posted), but this may be too optimistic.

              I think in short the cost is too high, but other injectables might work too (as the other posters recommend) so going for a clinical trial with an injectable (ideally combined with immunotherapy since I think they work well together) could be a good idea. If you can travel economy or if they can send the stuff to brazil, it might work. I think you need to find a trial where the drug company pays.

              Am sorry for the bad news, but I think for localized disease injectables plus pembro are a good idea (see texmelanomex posts too please for pv-10), so i hope you can find a trial, and then I hope your wife is in good enough shape to travel economy or economy plus

              good luck Mark

              Roberto
              Participant
                Hi mark,
                I am very happy to hear that you have had good results with T-VEC. This motivates us to fight even harder. Are these prices you mention for T-VEC (price 8,000 member price 5,500) for each application? Is it just the medication or are the hospital expenses for the outpatient application included?The pembrolizumab we have in Brazil and my health insurance pays. I only had to be traveling to do the pembro in Brazil every 3 weeks.
                Mark_DC
                Participant
                  Hi Roberto,

                  Unfortunately it is for each application – sorry. On the bright side, it seems to be cheaper than pembro!
                  I didnt include the outpatient services – you need a doctor to do the injecting; the TVEC needs to be stored in frozen ice or they need a proper fridge in the pharmacy (my hospital lacked this)
                  My guess is this would cost 500-1,000 per injection, but I think everything is exaggerated, the hospital must be making money from the markup on the TVEC itself.
                  If you have three lesions I would guess they multiply by three (sorry)

                  I did both every two weeks, I think it was mirroring a trial protocol. Doing it every two weeks also means that missing a session is not too fatal, as this means you at least get treatment within four weeks.

                  I think the advice of others on the board is better. The US medical system is too complicated and expensive to go it alone. Random charges can appear. Try to get into a trial using TVEC another injectable. I cannot say it always works – I was the first using TVEC in my hospital; others followed, but with more burden, and it did not work for them. but your wife’s case seems like it could work.

                  If pembro is keeping things stable, then it acts as an insurance policy against spread. And my guess is that in my case the TVEC helped the pembro work on the targeted lesions.

                  I am not out of the woods yet far from it, and my last scans showed a possible recurrence (small), but i did see the TVEC work for me, after 1 year of gradual tumour growth on pembro. So look up other injectable patients like texmelanomex, try and get a trial if you can cover the flight costs.

                  Good luck Mark

                  Roberto
                  Participant
                    Dear Celeste,

                    Thank you very much for the information. I will get in touch with these organizations you mention. About “the Amgen Safety Net Foundation”, I saw on their website that they have a drug supply program. But unfortunately, it is only for US citizens and residents over 6 months.

                    Dear Celeste, I would like to tell you that you are amazing. I learned a lot more from reading your blog than from all the doctors I consulted.

                    I also want to thank you for introducing me (your blog), “Counting Star” (One Republic). This song has been with us ever since.

                    Roberto
                    Participant
                      Dear Celeste,

                      Thank you very much for the information. I will get in touch with these organizations you mention. About “the Amgen Safety Net Foundation”, I saw on their website that they have a drug supply program. But unfortunately, it is only for US citizens and residents over 6 months.

                      Dear Celeste, I would like to tell you that you are amazing. I learned a lot more from reading your blog than from all the doctors I consulted.

                      I also want to thank you for introducing me (your blog), “Counting Star” (One Republic). This song has been with us ever since.

                      Bubbles
                      Participant
                        Oh, you are most kind, Roberto. Yes, HOPE is most certainly a four letter word!!!

                        Having already participated in a study you are most likely more than familiar with the clinical trials web site…but just in case – here is a link to their site and the currently recruiting trials for melanoma: https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Melanoma+Stage+IV&term=&cntry=&state=&city=&dist=

                        Ed makes a good point that intralesionals other than T-VEC may be a reasonable option. Though you may have already seen it, here is a run down from my blog with many links re intralesionals: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/01/in-transit-melanoma-metastases-and-pv.html

                        I don’t know if you or your wife’s docs have considered, or how available it would be to you, but additional tumor testing has been helpful to many melanoma folks who have not responded to conventional melanoma therapy. We have found that in some their tumors have mutations that make them responsive to drugs typically used for other cancers. Maureen’s husband (from this forum) is one example: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/excellent-scans-breast-cancer

                        And cause, as my family always says – She’s got a song for that!!!! – Here are a few that might hit the right note just now (if you haven’t seen/heard them):
                        Whatever it takes!!! – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=whatever+it+takes
                        If you’re going through hell – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/09/mantra-and-angels-for-round-2.html
                        Look up child – https://www.youtube.com/watch?v=7NAYz0zh_Es

                        I wish there was more I could do. Let me know if there is anything I can help you with. Wishing you and your wife my very best. Celeste

                      MelanomaMike
                      Participant
                        Hi Roberto, I remember your posts I believe months ago while she was still doing the Ipi Nivo ( I think it was you, Brazil rang a bell in my head! Haha) I wish i could help ya on what it would cost for a hypothetical round of treatment, like you said, it depends on her response to T-Vec to really gauge a “quantity of dosage” so, at least a “ball park price” is what you need if you’ve heard that term….prayers to your wife from the US, we hope you both get yer hands on TVEC or something readily available for her….Mike
                          Roberto
                          Participant
                            Hi Mike, it’s me. I don’t write much in the forum, but I always follow you. You made us worried when you spent some time without writing in the forum. Never do that again!! Man, I’ve been praying for you like someone in my family. Believe me, we’ll get out of this.
                            MelanomaMike
                            Participant
                              Why thank you brother, every evening before I go to bed, I pray for all my MRF folks and myself of course, I really hope you can land some TVEC or an equal value type Inject meds, that way you can put some of that Brazilian Ju Jitsu on your Wife’s Melanoma!! We’re gonna beat this, you’ll see….
                            ed williams
                            Participant
                              Hi Roberta, some thing to consider is clinical trials where the drug company are picking up part of the cost and why limited to t-vec, there are several injectables being looked at and in various stages of development. dr. Diab is at MD Anderson and is involved with a TLR-9 agonist trial. Link at the end. The problem that many trials are coming up against in melanoma is finding patients, so maybe this might be the best route to follow. It will probably require a face to face meeting and locating to Texas for some time. In the past people have posted about MD Anderson and international patients, I would think that if you contact them or visit their home page you will find that they offer resources for international patients.Best Wishes!!! Ed https://clinicaltrials.gov/ct2/show/study/NCT03445533?show_locs=Y#locn
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