Letters to Insurance Company Requesting To Pay For Deflazacort

I noticed a few individuals mentioned they wrote a letter to the insruance
company and were able to get approval from the insurnace comp to pay for the meds. It would be great if someone could share their letter or some good pointers and the insurance that approved paying for Deflazacort.

Thanks
Christian's Mom
Darcy

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Permalink Reply by christine good on December 17, 2008 at 11:32pm
Wow,
That would be great. It is a big financial burden. Anyone out there with advice and a sample letter?
Permalink Reply by DeAnne Friar on December 26, 2008 at 11:55pm
I have never heard of insurance paying for this becuase it was not FDA approved. I'd love to be wrong on this one. My insurance company (Blue Cross-Blue Shield) said "not until its approved"
Permalink Reply by Amy Wickert on January 1, 2009 at 1:41pm
I have a letter my Dr wrote to the insurance company. I will condence it and just put in the key points.
The letter starts off by introducing herself and gives a little history about Alec.
"It is well established that steroid therapy slows the rate of progression of muscle weakness for boys with dmd. It is particulary improtant that this treatment be used at the same time as there are pending treatments that will be available within the next decade that are believed will be of therapeutic benefit for dmd patients."
The letter goes on to say, "In all of the British commonwealth countries , in the European Union and in Asia, boys with dmd are treated with at steroind called Deflazacort. This appears to have much lower side effects in terms of fluid retention, hypertinsion, and linear growth retardation. I participate in international study groups and it is absolutely clear to me that this drug is clinically preferable to prednisone. However, this drug has not been brought to the FDA for consideration. I have been told that the clinical market for this is small enough that it does not justify the cost that would be involved for the pharma companies."
She then asks for approval, quotes the price from several British internet sites ($70 per month). "As this would be associated with many fewer medical complications than prednisone, I think it would be cost effective for you to consider this medication for Alec. In fact, the increased side effects of prednisone are such that many clinicians would defer using it in patients as young as 3 for fear of the linear growth retardation and excess weight gain. However, when Deflazacort is available, the positive benefit can be achieved with less side effect."
This letter was brought to the board of trustees. The next month I had to write a letter to them. I basically told them if they covered deflazacort it would save them a huge amount of money in the long run. Plus I told them that it wasn't worth it for any drug company to try to get the FDA to approve this drug because DMD is considered a rare disease and there is not enough demand for Deflazacort.
The board of trustees handed it over to their lawyer to look into the possible repercussions of granting our request. After I heard this news I thought we were doomed. However, a few weeks later I recieved the letter from our insurance company stating they would cover the non FDA approved drug of choice, Deflazacort!!!
I hope this will help those of you who are paying for Deflazacort out of your own pocket.
Permalink Reply by Darcy Tumminello on January 1, 2009 at 3:02pm
Thanks for Sharing Amy!
I'm going to give it a try.

Darcy

Amy Wickert said:
I have a letter my Dr wrote to the insurance company. I will condence it and just put in the key points.
The letter starts off by introducing herself and gives a little history about Alec.
"It is well established that steroid therapy slows the rate of progression of muscle weakness for boys with dmd. It is particulary improtant that this treatment be used at the same time as there are pending treatments that will be available within the next decade that are believed will be of therapeutic benefit for dmd patients."
The letter goes on to say, "In all of the British commonwealth countries , in the European Union and in Asia, boys with dmd are treated with at steroind called Deflazacort. This appears to have much lower side effects in terms of fluid retention, hypertinsion, and linear growth retardation. I participate in international study groups and it is absolutely clear to me that this drug is clinically preferable to prednisone. However, this drug has not been brought to the FDA for consideration. I have been told that the clinical market for this is small enough that it does not justify the cost that would be involved for the pharma companies."
She then asks for approval, quotes the price from several British internet sites ($70 per month). "As this would be associated with many fewer medical complications than prednisone, I think it would be cost effective for you to consider this medication for Alec. In fact, the increased side effects of prednisone are such that many clinicians would defer using it in patients as young as 3 for fear of the linear growth retardation and excess weight gain. However, when Deflazacort is available, the positive benefit can be achieved with less side effect."
This letter was brought to the board of trustees. The next month I had to write a letter to them. I basically told them if they covered deflazacort it would save them a huge amount of money in the long run. Plus I told them that it wasn't worth it for any drug company to try to get the FDA to approve this drug because DMD is considered a rare disease and there is not enough demand for Deflazacort.
The board of trustees handed it over to their lawyer to look into the possible repercussions of granting our request. After I heard this news I thought we were doomed. However, a few weeks later I recieved the letter from our insurance company stating they would cover the non FDA approved drug of choice, Deflazacort!!!
I hope this will help those of you who are paying for Deflazacort out of your own pocket.
Permalink Reply by Amy Wickert on January 1, 2009 at 4:35pm
Let me know if you get anywhere. I wish you luck! AMY
Permalink Reply by christine good on January 1, 2009 at 7:17pm
Amy Wickert said:
I have a letter my Dr wrote to the insurance company. I will condence it and just put in the key points.
The letter starts off by introducing herself and gives a little history about Alec.
"It is well established that steroid therapy slows the rate of progression of muscle weakness for boys with dmd. It is particulary improtant that this treatment be used at the same time as there are pending treatments that will be available within the next decade that are believed will be of therapeutic benefit for dmd patients."
The letter goes on to say, "In all of the British commonwealth countries , in the European Union and in Asia, boys with dmd are treated with at steroind called Deflazacort. This appears to have much lower side effects in terms of fluid retention, hypertinsion, and linear growth retardation. I participate in international study groups and it is absolutely clear to me that this drug is clinically preferable to prednisone. However, this drug has not been brought to the FDA for consideration. I have been told that the clinical market for this is small enough that it does not justify the cost that would be involved for the pharma companies."
She then asks for approval, quotes the price from several British internet sites ($70 per month). "As this would be associated with many fewer medical complications than prednisone, I think it would be cost effective for you to consider this medication for Alec. In fact, the increased side effects of prednisone are such that many clinicians would defer using it in patients as young as 3 for fear of the linear growth retardation and excess weight gain. However, when Deflazacort is available, the positive benefit can be achieved with less side effect."
This letter was brought to the board of trustees. The next month I had to write a letter to them. I basically told them if they covered deflazacort it would save them a huge amount of money in the long run. Plus I told them that it wasn't worth it for any drug company to try to get the FDA to approve this drug because DMD is considered a rare disease and there is not enough demand for Deflazacort.
The board of trustees handed it over to their lawyer to look into the possible repercussions of granting our request. After I heard this news I thought we were doomed. However, a few weeks later I recieved the letter from our insurance company stating they would cover the non FDA approved drug of choice, Deflazacort!!!
I hope this will help those of you who are paying for Deflazacort out of your own pocket.
Permalink Reply by christine good on January 1, 2009 at 7:17pm
christine good said:
Amy Wickert said:
WHich insurance co. do you have?
I have a letter my Dr wrote to the insurance company. I will condence it and just put in the key points.
The letter starts off by introducing herself and gives a little history about Alec.
"It is well established that steroid therapy slows the rate of progression of muscle weakness for boys with dmd. It is particulary improtant that this treatment be used at the same time as there are pending treatments that will be available within the next decade that are believed will be of therapeutic benefit for dmd patients."
The letter goes on to say, "In all of the British commonwealth countries , in the European Union and in Asia, boys with dmd are treated with at steroind called Deflazacort. This appears to have much lower side effects in terms of fluid retention, hypertinsion, and linear growth retardation. I participate in international study groups and it is absolutely clear to me that this drug is clinically preferable to prednisone. However, this drug has not been brought to the FDA for consideration. I have been told that the clinical market for this is small enough that it does not justify the cost that would be involved for the pharma companies."
She then asks for approval, quotes the price from several British internet sites ($70 per month). "As this would be associated with many fewer medical complications than prednisone, I think it would be cost effective for you to consider this medication for Alec. In fact, the increased side effects of prednisone are such that many clinicians would defer using it in patients as young as 3 for fear of the linear growth retardation and excess weight gain. However, when Deflazacort is available, the positive benefit can be achieved with less side effect."
This letter was brought to the board of trustees. The next month I had to write a letter to them. I basically told them if they covered deflazacort it would save them a huge amount of money in the long run. Plus I told them that it wasn't worth it for any drug company to try to get the FDA to approve this drug because DMD is considered a rare disease and there is not enough demand for Deflazacort.
The board of trustees handed it over to their lawyer to look into the possible repercussions of granting our request. After I heard this news I thought we were doomed. However, a few weeks later I recieved the letter from our insurance company stating they would cover the non FDA approved drug of choice, Deflazacort!!!
I hope this will help those of you who are paying for Deflazacort out of your own pocket.
Permalink Reply by Amy Wickert on January 2, 2009 at 5:29pm
Blue Cross Blue Sheild
Permalink Reply by Darcy Tumminello on January 2, 2009 at 5:51pm
Amy,


Did the PCP or the specialist write the letter?

Thanks
Darcy






Amy Wickert said:
Blue Cross Blue Sheild
Permalink Reply by christine good on January 2, 2009 at 7:44pm
Darcy Tumminello said:
Amy,


Did the PCP or the specialist write the letter?

Thanks
Darcy






Amy Wickert said:
Blue Cross Blue Sheild

Me too. I'm gonna give it a try.

Thanks.
Permalink Reply by Amy Wickert on January 2, 2009 at 8:02pm
It was written by his neuro doc
Permalink Reply by Jessica Rothe on February 15, 2009 at 7:33pm
What insurance company do you have that covered this?

Thanks,
Jessica

Amy Wickert said:
I have a letter my Dr wrote to the insurance company. I will condence it and just put in the key points.
The letter starts off by introducing herself and gives a little history about Alec.
"It is well established that steroid therapy slows the rate of progression of muscle weakness for boys with dmd. It is particulary improtant that this treatment be used at the same time as there are pending treatments that will be available within the next decade that are believed will be of therapeutic benefit for dmd patients."
The letter goes on to say, "In all of the British commonwealth countries , in the European Union and in Asia, boys with dmd are treated with at steroind called Deflazacort. This appears to have much lower side effects in terms of fluid retention, hypertinsion, and linear growth retardation. I participate in international study groups and it is absolutely clear to me that this drug is clinically preferable to prednisone. However, this drug has not been brought to the FDA for consideration. I have been told that the clinical market for this is small enough that it does not justify the cost that would be involved for the pharma companies."
She then asks for approval, quotes the price from several British internet sites ($70 per month). "As this would be associated with many fewer medical complications than prednisone, I think it would be cost effective for you to consider this medication for Alec. In fact, the increased side effects of prednisone are such that many clinicians would defer using it in patients as young as 3 for fear of the linear growth retardation and excess weight gain. However, when Deflazacort is available, the positive benefit can be achieved with less side effect."
This letter was brought to the board of trustees. The next month I had to write a letter to them. I basically told them if they covered deflazacort it would save them a huge amount of money in the long run. Plus I told them that it wasn't worth it for any drug company to try to get the FDA to approve this drug because DMD is considered a rare disease and there is not enough demand for Deflazacort.
The board of trustees handed it over to their lawyer to look into the possible repercussions of granting our request. After I heard this news I thought we were doomed. However, a few weeks later I recieved the letter from our insurance company stating they would cover the non FDA approved drug of choice, Deflazacort!!!
I hope this will help those of you who are paying for Deflazacort out of your own pocket.

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