Received My Genotype Today, treatment Plan Unknown
Isiscat2011 said
Apr 27, 2014
Hi Tig:
I read sometime back that 1/3 of physicians consider unwillingness to use Interferon the equivalent of Interferon ineligible. (Don't ask me how they came up with 1/3--must have been some kind of poll.) The reasoning was essentially that a patient who is adverse to using Interferon is unlikely to be compliant with taking it so they should be considered ineligible. Seems reasonable to me.
So, are you saying that unwillingness is now included in the AASLD/IDSA Hep C Treatment Guidelines definition of "Interferon Ineligible?" I haven't seen that but I like it. Anything that opens up more treatment options for more people is good.
You mentioned the manufacturers of the new drugs condemning the old drugs. I have noticed some of that. They brag about how superior their drugs are and not so subtly suggest that the effectiveness of the first DAAs were exaggerated and/or didn't work out as well as everyone had hoped. Too funny. Nothing like a good cat fight.
I'm glad Interferon worked for you and I know it has helped many people achieve SVR. The only thing I knew about Interferon before taking it myself was that it was being used to treat (not cure but treat) feline aids. I had used it on a cat of mine for several years and it did extend his life. He lived to be 14 years old which is pretty long for an Aids kitty. Once I started taking the Interferon myself I thought "OMG, how could I have put my poor kitty through this?" I still question whether that was the right thing to do. Take care.
Tig said
Apr 26, 2014
Hey Isis,
I like your documentation on the description of IFN ineligibility. However, I need to add one that you left off. Believe it or not, this is being considered a qualifying event. Ready for this? The patient that doesn't want to take Interferon or the subjects who were self-defined Interferon unwilling.. The fear of negative IFN side effects qualifies it for the list of considerations. After all of the anecdotal evidence, I support the addition of it. But the need for treatment still has to be an important consideration for recommending it. I'm one of the lucky one's to obtain SVR with an IFN backbone treatment. Were it not for IFN, I would be still waiting for the good news. The number of reports providing these types of considerations is growing overnight. I'm sure, aside from the proof of improved therapies, the manufacturers have been quick to condemn the older SOC's as well. The fact will remain though that IFN has provided great successes in the medical field and will continue to be utilized for years to come.
Tig
New Evidence (6/13)
Intolerant patients are somewhat self-defined as patients who either stopped therapy because of adverse events (AEs) or had an AE that led a physician to discontinue treatment with IFN. The definition of an unwilling patient is very subjective and generally includes patients who have heard about the AEs associated with IFN and are not willing to take it. With careful monitoring and good counseling, most patients can get through IFN-based therapy but it can certainly be difficult for both the patient and the physician.
Isiscat2011 said
Apr 26, 2014
mallani wrote:
If you're the CC allele, you're more likely to be Interferon sensitive and should do very well on the Sovaldi/Peg/Riba for 12 weeks. If not CC, I'd avoid Interferon and use another DAA with Sovaldi. ( Olysio now, or wait for Ledipasvir).
Yes, and a reduced likelihood of success with Interferon, based on not having the CC allele, is another argument your doctor can make to your insurance provider (in addition to determining that you are "Interferon Ineligible").
I expect many doctors, who treat hep c regularly, have templates where they can just plug the specific patient information in and send it off to the insurance company.
Isiscat2011 said
Apr 26, 2014
kurt wrote:
I think much has to do with the way your MD frames the requests.
I think you are right, Kurt. Doctors generally play a key role in determining what meds will be paid for and hep c tx is no exception.
Some doctors are "warehousing" patients who are willing and able to wait for newer treatment options. For deciding what to prescribe now doctors are following guidelines promulgated by medical societies; specifically they are following the recommendations set forth by the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA). (I am speaking of US physicians; I don't know how they are handling this in other countries.) The guidelines can be viewed at: www.hcvguidelines.org
For those who are genotype 1 your doctor will, in all likelihood, need to determine that you are "Interferon Ineligible" to get third party payers to pay for the off label combo. The medical guidelines define "Interferon Ineligible" and docs have some discretion in interpreting and applying this definition. Some doctors will be liberal with their interpretations while others will be conservative. Insurance providers should have guidelines that parallel the medical guidelines or simply defer to medical guidelines.
IFN ineligible is defined as one or more of the below:
Intolerance to IFN
Autoimmune hepatitis and other autoimmune disorders
Hypersensitivity to PEG or any of its components
Decompensated hepatic disease
Major uncontrolled depressive illness
A baseline neutrophil count below 1500/L, a baseline platelet count below 90,000/L or baseline hemoglobin below 10 g/dL
A history of preexisting cardiac disease
As you can see the definition of "Interferon Ineligible" is designed to limit off label prescriptions to patients on a "need" basis. People who have treated unsuccessfully with Interferon before and/or who have more severe liver disease are most likely to be approved.
Having said that, some creative interpretation by a physician will go a long way with getting an insurance company to pay, and many doctors are willing to go the extra mile for their patients as long as the believe it is not in opposition to their patients' interests to do so. Other doctors are not so willing, particularly when there are newer and possibly better treatments on the horizon.
jimbob said
Apr 26, 2014
Kurt--
First of all welcome to the forum. Lots of good info here if you need help.
I am wondering how you managed to get the Sov/Oly treatment? Usually, presons with 1a are assigned Peg/Rib/Sov, like myself, because it's the recommended tx. I was told that was the approved tx by my insurance.
Thanks,
jimbob
kurt said
Apr 26, 2014
I have UHC also and I'm a type 1a. I was quickly approved for the Soaldi/Olysio treatment. I think much has to do with the way your MD frames the requests. The insurance companies have non medical people with code books determining what's covered and what's not.
mallani said
Mar 19, 2014
Hi Rob,
Try to find out whether you're Geno 1a or 1b. 1a is more common in the USA. I'd ask about getting an IL28B genotype test. If you're the CC allele, you're more likely to be Interferon sensitive and should do very well on the Sovaldi/Peg/Riba for 12 weeks. If not CC, I'd avoid Interferon and use another DAA with Sovaldi. ( Olysio now, or wait for Ledipasvir).
Fireman Rob said
Mar 19, 2014
So I called the doctor's office today and got word I'm Genotype 1, Bummer. But I expected as much when the virus was discovered. With the doc being out of town for two weeks, I'm having a hard time getting the Medical Assistant to understand my request for the Solvaldi/Olysio treatment option. I'm sure this is something the doc himself must request and see if insurance will cover it.? She has never heard of the treatment option and probably thinks I'm "up in the night". LOL I explained the off-label factor and she's looking into it now but is still probably convinced I need the Solvaldi, Interferon, and Riba like initially discussed with the doc.
Hope everything gets figured out soon and I can get started sooner than later. And if I couldn't afford the or get the off-label treatment approved, I would feel fortunate to at least have a 12 week option with Solvaldi. It's worth a try right? Anyone else have United Health Care Insurance and is approved for the off-label treatment? I'm following your advice and trying to be the best advocate for myself so I can continue working hard and long hours.
Hi Tig:
I read sometime back that 1/3 of physicians consider unwillingness to use Interferon the equivalent of Interferon ineligible. (Don't ask me how they came up with 1/3--must have been some kind of poll.) The reasoning was essentially that a patient who is adverse to using Interferon is unlikely to be compliant with taking it so they should be considered ineligible. Seems reasonable to me.
So, are you saying that unwillingness is now included in the AASLD/IDSA Hep C Treatment Guidelines definition of "Interferon Ineligible?" I haven't seen that but I like it. Anything that opens up more treatment options for more people is good.
You mentioned the manufacturers of the new drugs condemning the old drugs. I have noticed some of that. They brag about how superior their drugs are and not so subtly suggest that the effectiveness of the first DAAs were exaggerated and/or didn't work out as well as everyone had hoped. Too funny. Nothing like a good cat fight.
I'm glad Interferon worked for you and I know it has helped many people achieve SVR. The only thing I knew about Interferon before taking it myself was that it was being used to treat (not cure but treat) feline aids. I had used it on a cat of mine for several years and it did extend his life. He lived to be 14 years old which is pretty long for an Aids kitty. Once I started taking the Interferon myself I thought "OMG, how could I have put my poor kitty through this?" I still question whether that was the right thing to do. Take care.
Hey Isis,
I like your documentation on the description of IFN ineligibility. However, I need to add one that you left off. Believe it or not, this is being considered a qualifying event. Ready for this? The patient that doesn't want to take Interferon or the subjects who were self-defined Interferon unwilling.. The fear of negative IFN side effects qualifies it for the list of considerations. After all of the anecdotal evidence, I support the addition of it. But the need for treatment still has to be an important consideration for recommending it. I'm one of the lucky one's to obtain SVR with an IFN backbone treatment. Were it not for IFN, I would be still waiting for the good news. The number of reports providing these types of considerations is growing overnight. I'm sure, aside from the proof of improved therapies, the manufacturers have been quick to condemn the older SOC's as well. The fact will remain though that IFN has provided great successes in the medical field and will continue to be utilized for years to come.
Tig
New Evidence (6/13)
Intolerant patients are somewhat self-defined as patients who either stopped therapy because of adverse events (AEs) or had an AE that led a physician to discontinue treatment with IFN. The definition of an unwilling patient is very subjective and generally includes patients who have heard about the AEs associated with IFN and are not willing to take it. With careful monitoring and good counseling, most patients can get through IFN-based therapy but it can certainly be difficult for both the patient and the physician.
Yes, and a reduced likelihood of success with Interferon, based on not having the CC allele, is another argument your doctor can make to your insurance provider (in addition to determining that you are "Interferon Ineligible").
I expect many doctors, who treat hep c regularly, have templates where they can just plug the specific patient information in and send it off to the insurance company.
I think you are right, Kurt. Doctors generally play a key role in determining what meds will be paid for and hep c tx is no exception.
Some doctors are "warehousing" patients who are willing and able to wait for newer treatment options. For deciding what to prescribe now doctors are following guidelines promulgated by medical societies; specifically they are following the recommendations set forth by the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA). (I am speaking of US physicians; I don't know how they are handling this in other countries.) The guidelines can be viewed at: www.hcvguidelines.org
For those who are genotype 1 your doctor will, in all likelihood, need to determine that you are "Interferon Ineligible" to get third party payers to pay for the off label combo. The medical guidelines define "Interferon Ineligible" and docs have some discretion in interpreting and applying this definition. Some doctors will be liberal with their interpretations while others will be conservative. Insurance providers should have guidelines that parallel the medical guidelines or simply defer to medical guidelines.
IFN ineligible is defined as one or more of the below:
As you can see the definition of "Interferon Ineligible" is designed to limit off label prescriptions to patients on a "need" basis. People who have treated unsuccessfully with Interferon before and/or who have more severe liver disease are most likely to be approved.
Having said that, some creative interpretation by a physician will go a long way with getting an insurance company to pay, and many doctors are willing to go the extra mile for their patients as long as the believe it is not in opposition to their patients' interests to do so. Other doctors are not so willing, particularly when there are newer and possibly better treatments on the horizon.
First of all welcome to the forum. Lots of good info here if you need help.
I am wondering how you managed to get the Sov/Oly treatment? Usually, presons with 1a are assigned Peg/Rib/Sov, like myself, because it's the recommended tx. I was told that was the approved tx by my insurance.
Thanks,
jimbob
Hi Rob,
Try to find out whether you're Geno 1a or 1b. 1a is more common in the USA. I'd ask about getting an IL28B genotype test. If you're the CC allele, you're more likely to be Interferon sensitive and should do very well on the Sovaldi/Peg/Riba for 12 weeks. If not CC, I'd avoid Interferon and use another DAA with Sovaldi. ( Olysio now, or wait for Ledipasvir).
So I called the doctor's office today and got word I'm Genotype 1, Bummer. But I expected as much when the virus was discovered. With the doc being out of town for two weeks, I'm having a hard time getting the Medical Assistant to understand my request for the Solvaldi/Olysio treatment option. I'm sure this is something the doc himself must request and see if insurance will cover it.? She has never heard of the treatment option and probably thinks I'm "up in the night". LOL I explained the off-label factor and she's looking into it now but is still probably convinced I need the Solvaldi, Interferon, and Riba like initially discussed with the doc.
Hope everything gets figured out soon and I can get started sooner than later. And if I couldn't afford the or get the off-label treatment approved, I would feel fortunate to at least have a 12 week option with Solvaldi. It's worth a try right? Anyone else have United Health Care Insurance and is approved for the off-label treatment? I'm following your advice and trying to be the best advocate for myself so I can continue working hard and long hours.
Have a great day everyone!
-Rob