Paying for clinical trial

I have to say I am quite naive and a little more than bummed out…I had no idea you actually had to pay for clinical trials! I am uninsured and very blessed that I am able to get treatment through the VA. But there might come a time where the VA will not offer additional treatment and I thought that clinical trials would be an option. What if a person gets some type of placebo? Doesn't really seem fair.

Cristy, Stage IV

I have to say I am quite naive and a little more than bummed out…I had no idea you actually had to pay for clinical trials! I am uninsured and very blessed that I am able to get treatment through the VA. But there might come a time where the VA will not offer additional treatment and I thought that clinical trials would be an option. What if a person gets some type of placebo? Doesn't really seem fair.

Cristy, Stage IV

I have to say I am quite naive and a little more than bummed out…I had no idea you actually had to pay for clinical trials! I am uninsured and very blessed that I am able to get treatment through the VA. But there might come a time where the VA will not offer additional treatment and I thought that clinical trials would be an option. What if a person gets some type of placebo? Doesn't really seem fair.

Cristy, Stage IV

With a clinical trial, the cost of the drug is usually covered by the trial – not on your dime.  Insurance companies rarely pay for experimental drugs so don't bother asking if they'd cover a trial.  You can usually find this info listed on most insurance policies.  (The exception might be AFLAC – they will pay money towards trials with a cancer policy but that is in addition to your regular insurance, not in place of it).  The trial must cover the cost of the drug.  However, regular scans, blood work, drugs for side effects, etc. and other incidental things are usually not paid for by the trial, and they expect you or your insurance company to cover those costs.  I believe if you are treated at NCI they cover all your costs past the initial visit.  But most trials cover the drug only and you are responsible for the rest.

Best wishes,

Janner

With a clinical trial, the cost of the drug is usually covered by the trial – not on your dime.  Insurance companies rarely pay for experimental drugs so don't bother asking if they'd cover a trial.  You can usually find this info listed on most insurance policies.  (The exception might be AFLAC – they will pay money towards trials with a cancer policy but that is in addition to your regular insurance, not in place of it).  The trial must cover the cost of the drug.  However, regular scans, blood work, drugs for side effects, etc. and other incidental things are usually not paid for by the trial, and they expect you or your insurance company to cover those costs.  I believe if you are treated at NCI they cover all your costs past the initial visit.  But most trials cover the drug only and you are responsible for the rest.

Best wishes,

Janner

With a clinical trial, the cost of the drug is usually covered by the trial – not on your dime.  Insurance companies rarely pay for experimental drugs so don't bother asking if they'd cover a trial.  You can usually find this info listed on most insurance policies.  (The exception might be AFLAC – they will pay money towards trials with a cancer policy but that is in addition to your regular insurance, not in place of it).  The trial must cover the cost of the drug.  However, regular scans, blood work, drugs for side effects, etc. and other incidental things are usually not paid for by the trial, and they expect you or your insurance company to cover those costs.  I believe if you are treated at NCI they cover all your costs past the initial visit.  But most trials cover the drug only and you are responsible for the rest.

Best wishes,

Janner

I have participated in two clinical trials, and as Janner noted, there is not cost to the patient for the experimental drug and in my case, all of the lab tests, scans, etc, were covered by my insurance company.

However, I did elect to travel for both trials (one of them was across the country) and of course those expenses were not covered.  I do believe that trials at NCI do offer some compensation for those costs but not 100% .  

Best regards,

Mary

I have participated in two clinical trials, and as Janner noted, there is not cost to the patient for the experimental drug and in my case, all of the lab tests, scans, etc, were covered by my insurance company.

However, I did elect to travel for both trials (one of them was across the country) and of course those expenses were not covered.  I do believe that trials at NCI do offer some compensation for those costs but not 100% .  

Best regards,

Mary

I have participated in two clinical trials, and as Janner noted, there is not cost to the patient for the experimental drug and in my case, all of the lab tests, scans, etc, were covered by my insurance company.

However, I did elect to travel for both trials (one of them was across the country) and of course those expenses were not covered.  I do believe that trials at NCI do offer some compensation for those costs but not 100% .  

Best regards,

Mary

This, sadly, is one of many dirty little secrets about cancer care and it forces one to "game " the system or get left behind.

That is not to say I advocate collusion or subterfuge,, but one MUST work within the rules of the game in order to play the game.

As Janner pointed out,, all trials will pay for the drug and the cost to administer it.  But insurance will NOT always pay for the pre-qualification or  required trial follow up unless it is disguised and/or supported  by medical coding.  This is where it is beneficial to have a patient advocate or navigator.

Like it or not, some cancer centers push a certain clinical trail due to their pharma  alliance and the associated/attached  research money..  As such, many trial centers will, IF YOU ASK, pay for or waive the pre-qualification and follow-up costs..  But not always and certainly not if you do not ask. 

Others will willingly disguise your trial participation and do the medical coding for insurance payment.

I am not a conspiracy theorist, but this IS how the the system works.

The point is, it is important to have a conversation and the development of a physical and money plan before signing off on a clinical trial consent form.

Cheers,

Charlie S

This, sadly, is one of many dirty little secrets about cancer care and it forces one to "game " the system or get left behind.

That is not to say I advocate collusion or subterfuge,, but one MUST work within the rules of the game in order to play the game.

As Janner pointed out,, all trials will pay for the drug and the cost to administer it.  But insurance will NOT always pay for the pre-qualification or  required trial follow up unless it is disguised and/or supported  by medical coding.  This is where it is beneficial to have a patient advocate or navigator.

Like it or not, some cancer centers push a certain clinical trail due to their pharma  alliance and the associated/attached  research money..  As such, many trial centers will, IF YOU ASK, pay for or waive the pre-qualification and follow-up costs..  But not always and certainly not if you do not ask. 

Others will willingly disguise your trial participation and do the medical coding for insurance payment.

I am not a conspiracy theorist, but this IS how the the system works.

The point is, it is important to have a conversation and the development of a physical and money plan before signing off on a clinical trial consent form.

Cheers,

Charlie S

This, sadly, is one of many dirty little secrets about cancer care and it forces one to "game " the system or get left behind.

That is not to say I advocate collusion or subterfuge,, but one MUST work within the rules of the game in order to play the game.

As Janner pointed out,, all trials will pay for the drug and the cost to administer it.  But insurance will NOT always pay for the pre-qualification or  required trial follow up unless it is disguised and/or supported  by medical coding.  This is where it is beneficial to have a patient advocate or navigator.

Like it or not, some cancer centers push a certain clinical trail due to their pharma  alliance and the associated/attached  research money..  As such, many trial centers will, IF YOU ASK, pay for or waive the pre-qualification and follow-up costs..  But not always and certainly not if you do not ask. 

Others will willingly disguise your trial participation and do the medical coding for insurance payment.

I am not a conspiracy theorist, but this IS how the the system works.

The point is, it is important to have a conversation and the development of a physical and money plan before signing off on a clinical trial consent form.

Cheers,

Charlie S

I am in a clinical trial at Moffitt. The insurance company is expected to pay for routine treatments like scans, blood work etc not related to the trial that you would have to pay for if you weren't in a clinicial trial. The blood work related to the trial, the drugs and anything related specifically to the trial the trial will pay for. I kind of wonder though -since I have thyroid issues and getting a test on my adrenal glads because of a cyst they think is both related to the trial if they will try and charge my insurance company anyways…Some places like Fred Hutchinson may not charge you ate all…when I went to get my T cells cloned they didn't even ask me for my insurance card or anything. At Moffitt they took my insurance information and explainned they would bill them for "normal" treatment, however Moffitt has a plan that if you don't have insurance they will still cover you from a charity fund if you are low to no income.-Lynn

I am in a clinical trial at Moffitt. The insurance company is expected to pay for routine treatments like scans, blood work etc not related to the trial that you would have to pay for if you weren't in a clinicial trial. The blood work related to the trial, the drugs and anything related specifically to the trial the trial will pay for. I kind of wonder though -since I have thyroid issues and getting a test on my adrenal glads because of a cyst they think is both related to the trial if they will try and charge my insurance company anyways…Some places like Fred Hutchinson may not charge you ate all…when I went to get my T cells cloned they didn't even ask me for my insurance card or anything. At Moffitt they took my insurance information and explainned they would bill them for "normal" treatment, however Moffitt has a plan that if you don't have insurance they will still cover you from a charity fund if you are low to no income.-Lynn

I am in a clinical trial at Moffitt. The insurance company is expected to pay for routine treatments like scans, blood work etc not related to the trial that you would have to pay for if you weren't in a clinicial trial. The blood work related to the trial, the drugs and anything related specifically to the trial the trial will pay for. I kind of wonder though -since I have thyroid issues and getting a test on my adrenal glads because of a cyst they think is both related to the trial if they will try and charge my insurance company anyways…Some places like Fred Hutchinson may not charge you ate all…when I went to get my T cells cloned they didn't even ask me for my insurance card or anything. At Moffitt they took my insurance information and explainned they would bill them for "normal" treatment, however Moffitt has a plan that if you don't have insurance they will still cover you from a charity fund if you are low to no income.-Lynn

In 06 I participated in a very large trial.  There were 4 arms and the drug itself was paid for.  1 arm was a placebo.  I was responsible for everything except for the actual drug.  Even had to pay for the needles and the alcohol pads!  When you realize that I had to miss a month every day, travel 3 hours each way ect I was responsible for the cost!   This became very expensive. Originally when I didn't have an appointment I agreed to pay for the shipping instead of me missing work.  During the 2nd month they had not bothered adding the freezer pack and the drug was ruined.  NIH informed them that they had not been allowed to ship.  

I then learned that my insurance would have cost me $20 a month to just have the medicine off label.  I had not been informed for sure, decisions were made to quickly.  I could get out of the trial but no Dr would then offer me the off label drug because they felt then it was inethical.  I was stuck.   I have to tell you that trial issues is not a perfect case.

When I later had a recurrance I was informed that at least I did get the drug.  By half way through the trial I was so disallusioned with the oncologist (mine became sick and did not care for his replacement) so I doubled up oncologists. I finished the trial and moved on to another Dr while I finished the trial.   At the time is when Charlie S helped me find my new oncologist that was closer to home and so wise. 

There is a real purpose with trials. You have to make knowledgeble decisions and make your choices.  Health care is expensive. WE still have a great system in the US, especially compared to many other countries.  If you need help then talk to the social workers and help them work out the plans.  Even simple things like transportation costs.

WE happen to live in a great county in SC.  Who would have been given such a gift.  The ANderson cancer association (totally a private funded group) give all (no financial requirements) have given me 1,000 to help transportation and hotels each year while I have active disease.  All I have had to do is hand in Dr appointments.  While NED then I'm on my own.  Hope so much that I no longer have to ask for more soon.  WE've had to go to Charlotte 4 times in the past 2 weeks and they just handed me 300.  This is enough to also give us lunch.  I have about 300 left till December and have already been told that in Jan the full 1,000 will be there.  They also offer co-pays for pain medicine and local transportation is done mpg.   I have chosen to only use the further traveling. I am also thankful that we do have insurance. It's the traveling that is stinging.  All funds are raised by private groups.  They have concerts, girlfriend teas, even a dragon team that races.  3 people are paid and the rest are volunteers. A local oncologist along with his wife is a radiologist. They provide the building.  When we show up we're given hugs and they know our names. They also offer support groups.  I happened to hear about them literally a week after we moved here last summer.  Went to a quilt guild meeting for the first time and the head of the association was there thanking the group for raffling a quilt as a fund raiser.  The only thing they ask from those of us that use the services are when possible to become active in the community.   Being a quilter I've done a few little things for a silent aution and will always appreciate their help.

Ask around your community if you need help. There may be another group in your way also. 

Linda

In 06 I participated in a very large trial.  There were 4 arms and the drug itself was paid for.  1 arm was a placebo.  I was responsible for everything except for the actual drug.  Even had to pay for the needles and the alcohol pads!  When you realize that I had to miss a month every day, travel 3 hours each way ect I was responsible for the cost!   This became very expensive. Originally when I didn't have an appointment I agreed to pay for the shipping instead of me missing work.  During the 2nd month they had not bothered adding the freezer pack and the drug was ruined.  NIH informed them that they had not been allowed to ship.  

I then learned that my insurance would have cost me $20 a month to just have the medicine off label.  I had not been informed for sure, decisions were made to quickly.  I could get out of the trial but no Dr would then offer me the off label drug because they felt then it was inethical.  I was stuck.   I have to tell you that trial issues is not a perfect case.

When I later had a recurrance I was informed that at least I did get the drug.  By half way through the trial I was so disallusioned with the oncologist (mine became sick and did not care for his replacement) so I doubled up oncologists. I finished the trial and moved on to another Dr while I finished the trial.   At the time is when Charlie S helped me find my new oncologist that was closer to home and so wise. 

There is a real purpose with trials. You have to make knowledgeble decisions and make your choices.  Health care is expensive. WE still have a great system in the US, especially compared to many other countries.  If you need help then talk to the social workers and help them work out the plans.  Even simple things like transportation costs.

WE happen to live in a great county in SC.  Who would have been given such a gift.  The ANderson cancer association (totally a private funded group) give all (no financial requirements) have given me 1,000 to help transportation and hotels each year while I have active disease.  All I have had to do is hand in Dr appointments.  While NED then I'm on my own.  Hope so much that I no longer have to ask for more soon.  WE've had to go to Charlotte 4 times in the past 2 weeks and they just handed me 300.  This is enough to also give us lunch.  I have about 300 left till December and have already been told that in Jan the full 1,000 will be there.  They also offer co-pays for pain medicine and local transportation is done mpg.   I have chosen to only use the further traveling. I am also thankful that we do have insurance. It's the traveling that is stinging.  All funds are raised by private groups.  They have concerts, girlfriend teas, even a dragon team that races.  3 people are paid and the rest are volunteers. A local oncologist along with his wife is a radiologist. They provide the building.  When we show up we're given hugs and they know our names. They also offer support groups.  I happened to hear about them literally a week after we moved here last summer.  Went to a quilt guild meeting for the first time and the head of the association was there thanking the group for raffling a quilt as a fund raiser.  The only thing they ask from those of us that use the services are when possible to become active in the community.   Being a quilter I've done a few little things for a silent aution and will always appreciate their help.

Ask around your community if you need help. There may be another group in your way also. 

Linda

In 06 I participated in a very large trial.  There were 4 arms and the drug itself was paid for.  1 arm was a placebo.  I was responsible for everything except for the actual drug.  Even had to pay for the needles and the alcohol pads!  When you realize that I had to miss a month every day, travel 3 hours each way ect I was responsible for the cost!   This became very expensive. Originally when I didn't have an appointment I agreed to pay for the shipping instead of me missing work.  During the 2nd month they had not bothered adding the freezer pack and the drug was ruined.  NIH informed them that they had not been allowed to ship.  

I then learned that my insurance would have cost me $20 a month to just have the medicine off label.  I had not been informed for sure, decisions were made to quickly.  I could get out of the trial but no Dr would then offer me the off label drug because they felt then it was inethical.  I was stuck.   I have to tell you that trial issues is not a perfect case.

When I later had a recurrance I was informed that at least I did get the drug.  By half way through the trial I was so disallusioned with the oncologist (mine became sick and did not care for his replacement) so I doubled up oncologists. I finished the trial and moved on to another Dr while I finished the trial.   At the time is when Charlie S helped me find my new oncologist that was closer to home and so wise. 

There is a real purpose with trials. You have to make knowledgeble decisions and make your choices.  Health care is expensive. WE still have a great system in the US, especially compared to many other countries.  If you need help then talk to the social workers and help them work out the plans.  Even simple things like transportation costs.

WE happen to live in a great county in SC.  Who would have been given such a gift.  The ANderson cancer association (totally a private funded group) give all (no financial requirements) have given me 1,000 to help transportation and hotels each year while I have active disease.  All I have had to do is hand in Dr appointments.  While NED then I'm on my own.  Hope so much that I no longer have to ask for more soon.  WE've had to go to Charlotte 4 times in the past 2 weeks and they just handed me 300.  This is enough to also give us lunch.  I have about 300 left till December and have already been told that in Jan the full 1,000 will be there.  They also offer co-pays for pain medicine and local transportation is done mpg.   I have chosen to only use the further traveling. I am also thankful that we do have insurance. It's the traveling that is stinging.  All funds are raised by private groups.  They have concerts, girlfriend teas, even a dragon team that races.  3 people are paid and the rest are volunteers. A local oncologist along with his wife is a radiologist. They provide the building.  When we show up we're given hugs and they know our names. They also offer support groups.  I happened to hear about them literally a week after we moved here last summer.  Went to a quilt guild meeting for the first time and the head of the association was there thanking the group for raffling a quilt as a fund raiser.  The only thing they ask from those of us that use the services are when possible to become active in the community.   Being a quilter I've done a few little things for a silent aution and will always appreciate their help.

Ask around your community if you need help. There may be another group in your way also. 

Linda

This is what the Consent document has to say about costs for the trial I am on.  "The study drug R05185426 will be provided to you free of charge and you will not be billed for any clinic visits or for any of the tests required specifically by the study.  You or your insurance company will be charged or held responsible for the costs of your routine care (the care you would have received if you were not in the study).  The sponsor of this study, Roche, is paying New York University to perform this research."

Dick

This is what the Consent document has to say about costs for the trial I am on.  "The study drug R05185426 will be provided to you free of charge and you will not be billed for any clinic visits or for any of the tests required specifically by the study.  You or your insurance company will be charged or held responsible for the costs of your routine care (the care you would have received if you were not in the study).  The sponsor of this study, Roche, is paying New York University to perform this research."

Dick

This is what the Consent document has to say about costs for the trial I am on.  "The study drug R05185426 will be provided to you free of charge and you will not be billed for any clinic visits or for any of the tests required specifically by the study.  You or your insurance company will be charged or held responsible for the costs of your routine care (the care you would have received if you were not in the study).  The sponsor of this study, Roche, is paying New York University to perform this research."

Dick

Hi,

I am applaud that these pharmaceutical companies are not paying  for more patient coverage  in their trials.

I am participating in a BMS trial & my insurance company would not pay for the scans that I had to take to get intothe BMS trial. I had taken scans 6 weeks earlier found I progressed then needed to have scans again forthe BMS trials.My insurance co.would not pay because they had just paid forscans 6 weeks ago.

The study site asked for BMS to pay for the scans because the scan were not being paid for by my insurance company. BMS said no,it was ultimately the patients responsiblilty.

BMS is making so much money from Yervoy but will not help patients doing their trials.

BMS, as well as Merck, will also not pay for doctor clinical trial visits. Just the drug, blood work & ekg.

It would be great to expose these drug manufacturers in a newspaper article like the one that ran the story about Rouche and PLX4032 and the cousins. After that article Rouche needed todosome PR works & then Rouche gave PLX4032 for compassionate use.

People should know the patients in trials are  guinea pigs that drug companies will reap the benefits of patients taking their experimental drugs.The drug companies are only paying for the minumum for patients (labs, drug,ECG) Insurance companies get stuck with the billls & then we all  pay the price with our insurance premiums.

If not in a trial, patients would not be having all the scans done so close together. Drug companies shouldpick up the cost.

I wish we could all band together & get the word out about the drug companies dirty little secrets…Drug companies are taking advantage of cancer patients.

Hi,

I am applaud that these pharmaceutical companies are not paying  for more patient coverage  in their trials.

I am participating in a BMS trial & my insurance company would not pay for the scans that I had to take to get intothe BMS trial. I had taken scans 6 weeks earlier found I progressed then needed to have scans again forthe BMS trials.My insurance co.would not pay because they had just paid forscans 6 weeks ago.

The study site asked for BMS to pay for the scans because the scan were not being paid for by my insurance company. BMS said no,it was ultimately the patients responsiblilty.

BMS is making so much money from Yervoy but will not help patients doing their trials.

BMS, as well as Merck, will also not pay for doctor clinical trial visits. Just the drug, blood work & ekg.

It would be great to expose these drug manufacturers in a newspaper article like the one that ran the story about Rouche and PLX4032 and the cousins. After that article Rouche needed todosome PR works & then Rouche gave PLX4032 for compassionate use.

People should know the patients in trials are  guinea pigs that drug companies will reap the benefits of patients taking their experimental drugs.The drug companies are only paying for the minumum for patients (labs, drug,ECG) Insurance companies get stuck with the billls & then we all  pay the price with our insurance premiums.

If not in a trial, patients would not be having all the scans done so close together. Drug companies shouldpick up the cost.

I wish we could all band together & get the word out about the drug companies dirty little secrets…Drug companies are taking advantage of cancer patients.

Hi,

I am applaud that these pharmaceutical companies are not paying  for more patient coverage  in their trials.

I am participating in a BMS trial & my insurance company would not pay for the scans that I had to take to get intothe BMS trial. I had taken scans 6 weeks earlier found I progressed then needed to have scans again forthe BMS trials.My insurance co.would not pay because they had just paid forscans 6 weeks ago.

The study site asked for BMS to pay for the scans because the scan were not being paid for by my insurance company. BMS said no,it was ultimately the patients responsiblilty.

BMS is making so much money from Yervoy but will not help patients doing their trials.

BMS, as well as Merck, will also not pay for doctor clinical trial visits. Just the drug, blood work & ekg.

It would be great to expose these drug manufacturers in a newspaper article like the one that ran the story about Rouche and PLX4032 and the cousins. After that article Rouche needed todosome PR works & then Rouche gave PLX4032 for compassionate use.

People should know the patients in trials are  guinea pigs that drug companies will reap the benefits of patients taking their experimental drugs.The drug companies are only paying for the minumum for patients (labs, drug,ECG) Insurance companies get stuck with the billls & then we all  pay the price with our insurance premiums.

If not in a trial, patients would not be having all the scans done so close together. Drug companies shouldpick up the cost.

I wish we could all band together & get the word out about the drug companies dirty little secrets…Drug companies are taking advantage of cancer patients.