› Forums › General Melanoma Community › Input from anti – PD 1 trial patients
- This topic has 15 replies, 4 voices, and was last updated 11 years, 1 month ago by
mbaelaporte.
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- March 26, 2013 at 8:31 pm
I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be
most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating but maybe doesn't work ) and the team of Randy & Amanda
I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be
most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating but maybe doesn't work ) and the team of Randy & Amanda
Would you please talk to how your participation is being financed – does your insurance company fund trials? Is there a charity or organization that recognizes that patients play a huge part in the development of these medicines that are providing hope & wellness and that we need assistance in the evolution of said medicines.
I touched on this in prior post but some fine print and elaboration has come to pass. Upon hearing of my rejection from my ins. co. I asked about self pay not wanting to let pass maybe the only thing that will help prolong my life. There was no real follow up other than yes I could be considered if I chose to go that route. Without hearing back I had to formally request a study budget from my provider and after a little prodding I received an email from my provider 15 plus days later called a "breakdown" of my costs: just south of $ 160,000.00 with an itemization of say ten costs like CTscans – $78,932.00 – no designation of how many or for how long a treatment schedule this deposit was to cover.
I replyed back re: their breakdown; you call that a breakdown; a breakdown is what I'm having right now contending w / this news.
this email was cc to a number of others & I received a more compassionate letter the next day from someone directly involved w / the trial and the deposit number had been reduced to a little under one hundred thousand dollars and given a time frame of six months treatment.
I'm looking for a "competitor" trial provider, organization that supports all the legs of trial costs, etc…
news on how you are doing it, your success… all stories most encouraged, thanks, john
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- March 26, 2013 at 10:51 pm
Right! I don't understand why there isn't more support for these trial costs.
The upside for all involved is so great – this is how medicine progresses! There
is no reason a single critically ill individual would have to bear these type of costs.
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- March 26, 2013 at 10:51 pm
Right! I don't understand why there isn't more support for these trial costs.
The upside for all involved is so great – this is how medicine progresses! There
is no reason a single critically ill individual would have to bear these type of costs.
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- March 26, 2013 at 10:51 pm
Right! I don't understand why there isn't more support for these trial costs.
The upside for all involved is so great – this is how medicine progresses! There
is no reason a single critically ill individual would have to bear these type of costs.
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- March 27, 2013 at 8:37 am
Forgive me if i didn't quite understand what you were asking, but randy has medicare insurance, and is on dissability. He was on dissability prior to his diagnosis, so we already had good insurance. We havn't had to pay any out of pocket expense for anything as of yet. I know with the clinical tirals the drug your receive is free, but your insurance is billed for scans and other lab tests etc. I originally assumed everything about the clinical trial would be free since you're essencially offering your body up for experimentation, but they do still charge you for certian things unfortunately…
As for funding i dont have any real info on that. I will mention you can create a ''gofundme.com'' account which is a free donation website. My boyfriend had one and raised about 1,000 toward coast of treatments. Anti-pd1 has been working well for randy. He's had 3 insusions so far and his tumors we can feel are all about 1/3 to 1/2 the size they were (some probably more than 1/2 the size). Energy is almost back to normal, knees are still weak and can't walk too far, but has also gained about 10lbs. If you have any questions i'd be glad to ask to the best of my abilitly.
_Amanda
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- March 27, 2013 at 8:37 am
Forgive me if i didn't quite understand what you were asking, but randy has medicare insurance, and is on dissability. He was on dissability prior to his diagnosis, so we already had good insurance. We havn't had to pay any out of pocket expense for anything as of yet. I know with the clinical tirals the drug your receive is free, but your insurance is billed for scans and other lab tests etc. I originally assumed everything about the clinical trial would be free since you're essencially offering your body up for experimentation, but they do still charge you for certian things unfortunately…
As for funding i dont have any real info on that. I will mention you can create a ''gofundme.com'' account which is a free donation website. My boyfriend had one and raised about 1,000 toward coast of treatments. Anti-pd1 has been working well for randy. He's had 3 insusions so far and his tumors we can feel are all about 1/3 to 1/2 the size they were (some probably more than 1/2 the size). Energy is almost back to normal, knees are still weak and can't walk too far, but has also gained about 10lbs. If you have any questions i'd be glad to ask to the best of my abilitly.
_Amanda
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- March 27, 2013 at 8:37 am
Forgive me if i didn't quite understand what you were asking, but randy has medicare insurance, and is on dissability. He was on dissability prior to his diagnosis, so we already had good insurance. We havn't had to pay any out of pocket expense for anything as of yet. I know with the clinical tirals the drug your receive is free, but your insurance is billed for scans and other lab tests etc. I originally assumed everything about the clinical trial would be free since you're essencially offering your body up for experimentation, but they do still charge you for certian things unfortunately…
As for funding i dont have any real info on that. I will mention you can create a ''gofundme.com'' account which is a free donation website. My boyfriend had one and raised about 1,000 toward coast of treatments. Anti-pd1 has been working well for randy. He's had 3 insusions so far and his tumors we can feel are all about 1/3 to 1/2 the size they were (some probably more than 1/2 the size). Energy is almost back to normal, knees are still weak and can't walk too far, but has also gained about 10lbs. If you have any questions i'd be glad to ask to the best of my abilitly.
_Amanda
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- March 27, 2013 at 6:02 pm
Hi John –
Sorry to hear my link didn't work for my blog (I think I'm due for some updating!). I am particiapting in the Merck anti-PD1 trial. As for who pays – the drug company pays for the drug and any special testing they want done (biopsies, etc). I am response for standard of care (doctor visits, some blood tests, scans (I believe… but some trials cover these).
When doing trials – most drug companies will pay for the drug and several tests. You just end up paying for standard of care things. Although I've noticed that in the clinicla trial the oncologist is charging my insurance less per visit. Probably because I'm there every 3 weeks and he only sees me for about 5 minutes!
What trial were you looking at? I know there are several resources out there to help patients … I'll have to look for a listing of those.
Hope that helps some?
Erin
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- March 27, 2013 at 9:12 pm
Thank you Randall, Amanda and Erin May
Amanda so heartened to hear your Randy is doing well w / anti PD – 1; hooray
and your speaking of disability / medicare – I will look into possibilities – anyone on site know of how medicare goes w / clinical trials – willing participant?
and Erin May your Merck trial sounds like it requires many fewer metric tests in conjunction w / the trial so you are able to kinda travel in a parallel as standard of care carries the load – the Bristol Meyers trial is very involved w / labs & scans that the insurance company will balk at very soon so they require that the insurance co. is notified before trial begins
I'll look for Merck trial near me & do some investigating into how medicare treats trials…thank you
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- April 1, 2013 at 3:49 am
my latest
sleuthing through govt. trial listings found one that looked suitable & left a message & received a call from the doc running the trial & he had already spoken w / my oncologist ( and maybe worked w / her previously ) and referred to me by my nickname and spoke about how his clinic would be able to accommodate me even if my insurance co. does not participate in trials
Eureka ! – heading to southern california to see if I can qualify for anti PD 1 Merck
this site is always inspirational ..thanks
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- April 1, 2013 at 3:49 am
my latest
sleuthing through govt. trial listings found one that looked suitable & left a message & received a call from the doc running the trial & he had already spoken w / my oncologist ( and maybe worked w / her previously ) and referred to me by my nickname and spoke about how his clinic would be able to accommodate me even if my insurance co. does not participate in trials
Eureka ! – heading to southern california to see if I can qualify for anti PD 1 Merck
this site is always inspirational ..thanks
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- April 1, 2013 at 3:49 am
my latest
sleuthing through govt. trial listings found one that looked suitable & left a message & received a call from the doc running the trial & he had already spoken w / my oncologist ( and maybe worked w / her previously ) and referred to me by my nickname and spoke about how his clinic would be able to accommodate me even if my insurance co. does not participate in trials
Eureka ! – heading to southern california to see if I can qualify for anti PD 1 Merck
this site is always inspirational ..thanks
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- March 27, 2013 at 9:12 pm
Thank you Randall, Amanda and Erin May
Amanda so heartened to hear your Randy is doing well w / anti PD – 1; hooray
and your speaking of disability / medicare – I will look into possibilities – anyone on site know of how medicare goes w / clinical trials – willing participant?
and Erin May your Merck trial sounds like it requires many fewer metric tests in conjunction w / the trial so you are able to kinda travel in a parallel as standard of care carries the load – the Bristol Meyers trial is very involved w / labs & scans that the insurance company will balk at very soon so they require that the insurance co. is notified before trial begins
I'll look for Merck trial near me & do some investigating into how medicare treats trials…thank you
-
- March 27, 2013 at 9:12 pm
Thank you Randall, Amanda and Erin May
Amanda so heartened to hear your Randy is doing well w / anti PD – 1; hooray
and your speaking of disability / medicare – I will look into possibilities – anyone on site know of how medicare goes w / clinical trials – willing participant?
and Erin May your Merck trial sounds like it requires many fewer metric tests in conjunction w / the trial so you are able to kinda travel in a parallel as standard of care carries the load – the Bristol Meyers trial is very involved w / labs & scans that the insurance company will balk at very soon so they require that the insurance co. is notified before trial begins
I'll look for Merck trial near me & do some investigating into how medicare treats trials…thank you
-
- March 27, 2013 at 6:02 pm
Hi John –
Sorry to hear my link didn't work for my blog (I think I'm due for some updating!). I am particiapting in the Merck anti-PD1 trial. As for who pays – the drug company pays for the drug and any special testing they want done (biopsies, etc). I am response for standard of care (doctor visits, some blood tests, scans (I believe… but some trials cover these).
When doing trials – most drug companies will pay for the drug and several tests. You just end up paying for standard of care things. Although I've noticed that in the clinicla trial the oncologist is charging my insurance less per visit. Probably because I'm there every 3 weeks and he only sees me for about 5 minutes!
What trial were you looking at? I know there are several resources out there to help patients … I'll have to look for a listing of those.
Hope that helps some?
Erin
-
- March 27, 2013 at 6:02 pm
Hi John –
Sorry to hear my link didn't work for my blog (I think I'm due for some updating!). I am particiapting in the Merck anti-PD1 trial. As for who pays – the drug company pays for the drug and any special testing they want done (biopsies, etc). I am response for standard of care (doctor visits, some blood tests, scans (I believe… but some trials cover these).
When doing trials – most drug companies will pay for the drug and several tests. You just end up paying for standard of care things. Although I've noticed that in the clinicla trial the oncologist is charging my insurance less per visit. Probably because I'm there every 3 weeks and he only sees me for about 5 minutes!
What trial were you looking at? I know there are several resources out there to help patients … I'll have to look for a listing of those.
Hope that helps some?
Erin
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