Hello all,
I went through my transplant back in June. My transplant doctor wants me to be on maintenance with Pomalyst. At this point, I am not sure what dose. But I just looked at my co-payment for Pomalyst and it's over $800. I have assistance this year, but it runs out in December 2017. So I have checked the organizations on the list below and none are doing any multiple myeloma assistance. I have a message out to Celgene and am waiting for a response.
Is there any organization that provides assistance with Pomalyst co-payments?
Thank You,
George
List of organizations checked:
CancerCare
Good Days
Healthwell Foundation
LLS (Leukemia & Lymphoma Society)
Patient Access Network Foundation
Patient Advocate Foundation
Forums
6 posts
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Pomalyst co-payment assistance
My husband is running into the same problem. His current grant ran out this month and we have called every organization that offers copay assistance and no one is accepting applications for myeloma at this time. Does anyone on here know why all these organizations are running out of funds and all at the same time?
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ncspyderwoman - Name: Cindy n Jimmy
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 54
Re: Pomalyst co-payment assistance
Ncspyderwoman,
Just read your post.
The one thing that I didn't mention in my post was that during my transplant in June and up until now, I was not using any specialty drugs where I would need to use any of my allocated dollars. There is several thousand dollars left in my allocation. But it was an allocation for one year that ends in December. Not sure what happens to that money that was left over for multiple myeloma. They wouldn't extend that funding for me. And there allocation for multiple myeloma is closed.
I heard back from Celgene. Of course , like the funding organizations, they went over our income and based that to the national poverty level. With myself on Social Security and my wife's income, we fit their criteria.
If there is zero funding from all the organizations by the middle of December, they would call me back. And go over how they can assist. Probably a reduction on the co-pay. There was no mention of the amount. I will call them back myself.
Castaway
Just read your post.
The one thing that I didn't mention in my post was that during my transplant in June and up until now, I was not using any specialty drugs where I would need to use any of my allocated dollars. There is several thousand dollars left in my allocation. But it was an allocation for one year that ends in December. Not sure what happens to that money that was left over for multiple myeloma. They wouldn't extend that funding for me. And there allocation for multiple myeloma is closed.
I heard back from Celgene. Of course , like the funding organizations, they went over our income and based that to the national poverty level. With myself on Social Security and my wife's income, we fit their criteria.
If there is zero funding from all the organizations by the middle of December, they would call me back. And go over how they can assist. Probably a reduction on the co-pay. There was no mention of the amount. I will call them back myself.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Pomalyst co-payment assistance
Hi ncspyderwoman and Castaway,
Here are a couple of links regarding this issue.
http://beta.latimes.com/business/hiltzik/la-fi-mh-pharma-s-sham-patient-assistance-programs-20150925-column.html
https://nonprofitquarterly.org/2017/02/15/doj-keeps-spotlight-patient-assistance-charities-csr/
Also, the LLS announced earlier this year that
"after eight years of operating this fund on a first-come, first-served basis, in which we have been able to accommodate patients who we committed to helping, we experienced an unprecedented demand and number of applications that caused us to promise assistance to more patients than we could service. One of the many actions we are taking to rectify this is an immediate shift to a more easily managed co-pay approach ...
As myeloma co-pay programs at other organizations closed, more and more patients turned to us. We are unclear what has driven the other myeloma co-pay programs to close. We were anticipating additional funds to come in this fall from pharmaceutical companies to cover the patients already promised assistance, but the funds didn’t come in time and we simply ran out of money. We continue to work very hard to secure additional funds as quickly as possible ... Funding for the co-pay programs comes exclusively from pharmaceutical companies ....
[Our] co-pay assistance program operates under very strict guidelines set by the Office of Inspector General of the U.S. Department of Health and Human Services. Under these rules, the pharmaceutical companies earmark the disease silos to which their funds are committed. Contractually, we cannot move funds to cover a different disease category. Some of our co-pay programs are structured in the same first-come first-served model as the myeloma fund, and others have a reserved fund model. We are considering changing all of our programs, including the myeloma fund, to the reserved model. The advantage of this model is that the assistance level for each patient accepted into the program is reserved, thus eliminating the risk for lost funding for patients. The disadvantage is that we would be able to serve fewer patients and the program would become fully subscribed more quickly."
- Mark
Here are a couple of links regarding this issue.
http://beta.latimes.com/business/hiltzik/la-fi-mh-pharma-s-sham-patient-assistance-programs-20150925-column.html
https://nonprofitquarterly.org/2017/02/15/doj-keeps-spotlight-patient-assistance-charities-csr/
Also, the LLS announced earlier this year that
"after eight years of operating this fund on a first-come, first-served basis, in which we have been able to accommodate patients who we committed to helping, we experienced an unprecedented demand and number of applications that caused us to promise assistance to more patients than we could service. One of the many actions we are taking to rectify this is an immediate shift to a more easily managed co-pay approach ...
As myeloma co-pay programs at other organizations closed, more and more patients turned to us. We are unclear what has driven the other myeloma co-pay programs to close. We were anticipating additional funds to come in this fall from pharmaceutical companies to cover the patients already promised assistance, but the funds didn’t come in time and we simply ran out of money. We continue to work very hard to secure additional funds as quickly as possible ... Funding for the co-pay programs comes exclusively from pharmaceutical companies ....
[Our] co-pay assistance program operates under very strict guidelines set by the Office of Inspector General of the U.S. Department of Health and Human Services. Under these rules, the pharmaceutical companies earmark the disease silos to which their funds are committed. Contractually, we cannot move funds to cover a different disease category. Some of our co-pay programs are structured in the same first-come first-served model as the myeloma fund, and others have a reserved fund model. We are considering changing all of our programs, including the myeloma fund, to the reserved model. The advantage of this model is that the assistance level for each patient accepted into the program is reserved, thus eliminating the risk for lost funding for patients. The disadvantage is that we would be able to serve fewer patients and the program would become fully subscribed more quickly."
- Mark
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Mark11
Re: Pomalyst co-payment assistance
If you still have commercial insurance, call Celgene to request assistance.
LLS has just reopened their grants for myeloma with a maximum grant of $7,500 if approved. This time the grant is guaranteed once you are approved. You won't be dropped during your approved year.
Nancy in Phila
LLS has just reopened their grants for myeloma with a maximum grant of $7,500 if approved. This time the grant is guaranteed once you are approved. You won't be dropped during your approved year.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Pomalyst co-payment assistance
Nancy,
I did contact Celgene and they will help in some way. Probably a copay reduction of some kind. I also looked at the LLS and they are fully subscribed. They are still serving existing existing patients with their $7500.00 grants. My Pomalyst copay is $800 per prescription.
I did contact Celgene and they will help in some way. Probably a copay reduction of some kind. I also looked at the LLS and they are fully subscribed. They are still serving existing existing patients with their $7500.00 grants. My Pomalyst copay is $800 per prescription.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
6 posts
• Page 1 of 1
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