drug trials & funding / foundations that help
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drug trials & funding / foundations that help

› Forums › General Melanoma Community › drug trials & funding / foundations that help

  • Post
    • February 27, 2013 at 11:19 pm
    mbaelaporte
    Participant

    I am a prime candidate for a trial of anti PD1 at SCCA but an aspect of protocol is that my insurance company is notified & requested that they participate.

    My company refuses to participate in trials / I'm wondering if anyone is aware of any funding available from organizations that might partner w / my self pay route?  I've worked w / Chronic Disease Fund before but they also contribute only when using FDA approved drugs.  I notice Healthwell Foundation talks of metastatic melanoma assistance only for medicare patients.

    I am a prime candidate for a trial of anti PD1 at SCCA but an aspect of protocol is that my insurance company is notified & requested that they participate.

    My company refuses to participate in trials / I'm wondering if anyone is aware of any funding available from organizations that might partner w / my self pay route?  I've worked w / Chronic Disease Fund before but they also contribute only when using FDA approved drugs.  I notice Healthwell Foundation talks of metastatic melanoma assistance only for medicare patients.

    Please someone have some good info .  Many thanks,  john

Viewing 14 reply threads
  • Replies
      • February 28, 2013 at 12:05 am
      awillett1991
      Participant
      Don’t know anything about this group personally but try this – it says their mission is to help people participate in trials.

      Home

      • February 28, 2013 at 12:05 am
      awillett1991
      Participant
      Don’t know anything about this group personally but try this – it says their mission is to help people participate in trials.

      Home

        • February 28, 2013 at 4:08 pm
        killmel
        Participant

        Unfortunately, as a stage 4 melanoma patient, I was told  by Lazaren that they could not help pay for my clinical trial

        • February 28, 2013 at 4:08 pm
        killmel
        Participant

        Unfortunately, as a stage 4 melanoma patient, I was told  by Lazaren that they could not help pay for my clinical trial

        • February 28, 2013 at 4:08 pm
        killmel
        Participant

        Unfortunately, as a stage 4 melanoma patient, I was told  by Lazaren that they could not help pay for my clinical trial

      • February 28, 2013 at 12:05 am
      awillett1991
      Participant
      Don’t know anything about this group personally but try this – it says their mission is to help people participate in trials.

      Home

      • February 28, 2013 at 12:12 am
      jmmm
      Participant
      Healthwell does help with copays…it’s a hassle, but they’ve always been kind and have helped with my husbands bills for the past year-and-a-half. He has insurance through his employer, not Medicare
      You might call them and ask…they do have exceptions to most of their “rules.”
      • February 28, 2013 at 12:12 am
      jmmm
      Participant
      Healthwell does help with copays…it’s a hassle, but they’ve always been kind and have helped with my husbands bills for the past year-and-a-half. He has insurance through his employer, not Medicare
      You might call them and ask…they do have exceptions to most of their “rules.”
      • February 28, 2013 at 12:12 am
      jmmm
      Participant
      Healthwell does help with copays…it’s a hassle, but they’ve always been kind and have helped with my husbands bills for the past year-and-a-half. He has insurance through his employer, not Medicare
      You might call them and ask…they do have exceptions to most of their “rules.”
      • February 28, 2013 at 1:36 am
      Carole K
      Participant

      Jphn, I am so sorry you are going through this. I have for MANY MANY MANY YEARS. questioned why the many Melanoma Foundations out there are not able to help patients financially.  I pray one of these days my dream comes to fruition. Have you tried your local Cancer Society?  How about the pharmaceutical company who heads the trial?  Contact your State SEnator and the CEO of your own insurence company.  DON'T GIVE UP..

      Please know I am here to help if no other way,  for support.

      Love and Light

      Carole K

      • February 28, 2013 at 1:36 am
      Carole K
      Participant

      Jphn, I am so sorry you are going through this. I have for MANY MANY MANY YEARS. questioned why the many Melanoma Foundations out there are not able to help patients financially.  I pray one of these days my dream comes to fruition. Have you tried your local Cancer Society?  How about the pharmaceutical company who heads the trial?  Contact your State SEnator and the CEO of your own insurence company.  DON'T GIVE UP..

      Please know I am here to help if no other way,  for support.

      Love and Light

      Carole K

      • February 28, 2013 at 1:36 am
      Carole K
      Participant

      Jphn, I am so sorry you are going through this. I have for MANY MANY MANY YEARS. questioned why the many Melanoma Foundations out there are not able to help patients financially.  I pray one of these days my dream comes to fruition. Have you tried your local Cancer Society?  How about the pharmaceutical company who heads the trial?  Contact your State SEnator and the CEO of your own insurence company.  DON'T GIVE UP..

      Please know I am here to help if no other way,  for support.

      Love and Light

      Carole K

      • February 28, 2013 at 2:55 am
      ncdaniel
      Participant

      John , Please check with the American Cancer society, Many states have laws that require insurance payment in medical trials. Check this out and check on your state. Good Luck keep pushing !!

      • February 28, 2013 at 2:55 am
      ncdaniel
      Participant

      John , Please check with the American Cancer society, Many states have laws that require insurance payment in medical trials. Check this out and check on your state. Good Luck keep pushing !!

      • February 28, 2013 at 2:55 am
      ncdaniel
      Participant

      John , Please check with the American Cancer society, Many states have laws that require insurance payment in medical trials. Check this out and check on your state. Good Luck keep pushing !!

      • February 28, 2013 at 4:04 pm
      killmel
      Participant

      I would recommend that you "appeal" your insurance company's decision.

      HOWEVER,  just because you qualify for the PD1 trial does not mean that it is the ONLY or BEST treatment for you.

      THere has been much conversation on this site regarding the success of many who have taken IL2. Your insurance company should pay for IL 2 treatment because it is approved by FDA. Also, you can look at other approved FDA treatment : Yervoy & BRAF.

      • February 28, 2013 at 4:04 pm
      killmel
      Participant

      I would recommend that you "appeal" your insurance company's decision.

      HOWEVER,  just because you qualify for the PD1 trial does not mean that it is the ONLY or BEST treatment for you.

      THere has been much conversation on this site regarding the success of many who have taken IL2. Your insurance company should pay for IL 2 treatment because it is approved by FDA. Also, you can look at other approved FDA treatment : Yervoy & BRAF.

      • February 28, 2013 at 4:04 pm
      killmel
      Participant

      I would recommend that you "appeal" your insurance company's decision.

      HOWEVER,  just because you qualify for the PD1 trial does not mean that it is the ONLY or BEST treatment for you.

      THere has been much conversation on this site regarding the success of many who have taken IL2. Your insurance company should pay for IL 2 treatment because it is approved by FDA. Also, you can look at other approved FDA treatment : Yervoy & BRAF.

        • February 28, 2013 at 11:30 pm
        mbaelaporte
        Participant

        Hello one & All…thank you so much for all your contributions – each comment contains an outstanding thought or recommendation…and onward is this constantly moving calculus

        immediately went to site detailing state's findings on ins. co. participation guidelines & liked what I found for state of Washington " covered services, benefits routine patient care costs ( I've heard standard of care used ) associated w / approved Phase I through IV trials  –  put a call into coordinators voice mail hoping it is Phase I – thinking he maybe used different word to describe trial before- will let you know

        I've put a call into Lazarex

        Appeal process : haven't given up on that but went through that for BRAF trial and banging one's head against a wall can be deleterious –  at the time I was to begin BRAF it was rolling along w/ some fanfare & at stage IV BUT in the appeals process we were only able to represent it as stage II /  much gray area there but my take on it was they didn't want to let the cat out of the bag before Brian Williams could announce it on TV and all  h—  could brake loose in the New York Stock Casinos

        Yervoy & Braf –  two time receiver of Yervoy and one timer w / Braf –  close to 1 / 2 million $ s  according to accounting provided by my insurance carrier in year 2012 for the two therapies of Yervoy –  tenders one's approach to challenging provider

        And Only or Best;  from my knowledge PD 1 was looking like my best hope – had not heard of IL2 but I'm on to discovery as we speak  /  and yes my ins. co. comes through on FDA approved

        So glad I gave your minds a chance, Many thanks, john 

        • February 28, 2013 at 11:30 pm
        mbaelaporte
        Participant

        Hello one & All…thank you so much for all your contributions – each comment contains an outstanding thought or recommendation…and onward is this constantly moving calculus

        immediately went to site detailing state's findings on ins. co. participation guidelines & liked what I found for state of Washington " covered services, benefits routine patient care costs ( I've heard standard of care used ) associated w / approved Phase I through IV trials  –  put a call into coordinators voice mail hoping it is Phase I – thinking he maybe used different word to describe trial before- will let you know

        I've put a call into Lazarex

        Appeal process : haven't given up on that but went through that for BRAF trial and banging one's head against a wall can be deleterious –  at the time I was to begin BRAF it was rolling along w/ some fanfare & at stage IV BUT in the appeals process we were only able to represent it as stage II /  much gray area there but my take on it was they didn't want to let the cat out of the bag before Brian Williams could announce it on TV and all  h—  could brake loose in the New York Stock Casinos

        Yervoy & Braf –  two time receiver of Yervoy and one timer w / Braf –  close to 1 / 2 million $ s  according to accounting provided by my insurance carrier in year 2012 for the two therapies of Yervoy –  tenders one's approach to challenging provider

        And Only or Best;  from my knowledge PD 1 was looking like my best hope – had not heard of IL2 but I'm on to discovery as we speak  /  and yes my ins. co. comes through on FDA approved

        So glad I gave your minds a chance, Many thanks, john 

        • February 28, 2013 at 11:30 pm
        mbaelaporte
        Participant

        Hello one & All…thank you so much for all your contributions – each comment contains an outstanding thought or recommendation…and onward is this constantly moving calculus

        immediately went to site detailing state's findings on ins. co. participation guidelines & liked what I found for state of Washington " covered services, benefits routine patient care costs ( I've heard standard of care used ) associated w / approved Phase I through IV trials  –  put a call into coordinators voice mail hoping it is Phase I – thinking he maybe used different word to describe trial before- will let you know

        I've put a call into Lazarex

        Appeal process : haven't given up on that but went through that for BRAF trial and banging one's head against a wall can be deleterious –  at the time I was to begin BRAF it was rolling along w/ some fanfare & at stage IV BUT in the appeals process we were only able to represent it as stage II /  much gray area there but my take on it was they didn't want to let the cat out of the bag before Brian Williams could announce it on TV and all  h—  could brake loose in the New York Stock Casinos

        Yervoy & Braf –  two time receiver of Yervoy and one timer w / Braf –  close to 1 / 2 million $ s  according to accounting provided by my insurance carrier in year 2012 for the two therapies of Yervoy –  tenders one's approach to challenging provider

        And Only or Best;  from my knowledge PD 1 was looking like my best hope – had not heard of IL2 but I'm on to discovery as we speak  /  and yes my ins. co. comes through on FDA approved

        So glad I gave your minds a chance, Many thanks, john 

Viewing 14 reply threads
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