Any luck with Tufts PPO for IVIG?

[pandas mom]

We have been battling with Harvard Pilgrim for six months. It's been an exhausting, futile fight. I know many families are familiar with this nonsense. I will gladly switch jobs (I am a teacher) for an insurance co. that will support IVIg for my daughter. United Healthcare does not seem to be very present in MA. I have the opportunity to switch to Tufts if I take a different position. I love my school and job, but I love my daughter more. Any success for CVID or PANDAS diagnosis for IVIg with TUFTS? We've put two on credit card (amazing how credit cards companies will just increase the limit...) but we are at the end of our ability to do this.

Appreciate any advice or feedback. Thanks so much.

 

I could also decrease the time at my current job, so I lose my insurance- we'd then default to my husband's insurance which is BCBS MA.

[NancyD]

I know the battle all too well...although I have to say I had much better luck with HPHC than with BC/BS of MA. BC/BS of MA would only approve infusions for low IgG levels. Are you doing IVIg through Dr. B? Because he got DD approved for 3 infusions two years ago through HPHC when my MA doctors could not -- DD's IgG levels were high this time because of prior infusions however she failed most of the Strep Pneumoniae Serotypes, IgG (14 subtypes). DD had many infusions in 2008-2009 at CHB and they were covered by HPHC, but she had low IgG levels.

 

We had Tufts PPO many years ago and it was horrible. I had to fight for EVERYTHING. So check it out carefully before going with Tufts. I am considering going back to BC/BS now that DD no longer needs IVIg. BC/BS covered my integrative doctor whereas HPHC won't cover an integrative doctor under any circumstance (not even standard lab tests).

 

We have been battling with Harvard Pilgrim for six months. It's been an exhausting, futile fight. I know many families are familiar with this nonsense. I will gladly switch jobs (I am a teacher) for an insurance co. that will support IVIg for my daughter. United Healthcare does not seem to be very present in MA. I have the opportunity to switch to Tufts if I take a different position. I love my school and job, but I love my daughter more. Any success for CVID or PANDAS diagnosis for IVIg with TUFTS? We've put two on credit card (amazing how credit cards companies will just increase the limit...) but we are at the end of our ability to do this.

Appreciate any advice or feedback. Thanks so much.

 

I could also decrease the time at my current job, so I lose my insurance- we'd then default to my husband's insurance which is BCBS MA.

Edited June 1, 2012 by NancyD

[pandas mom]

Hi Nancy- Harvard Pilgrim has recently changed their policy. PANDAS is now on the excluded list for IVIg, as the treatment is considered experimental. DD's IgG levels are fine, but Serotypes are not. HPHC saw through all of this, and they are not fighting fair (though I'm beginning to understand that this is the norm). Tufts, though, does not sound like a better option. Maybe BCBS?

Thank you so much for replying. It's a big decision, so I'm trying to arm myself with the best information.

I hope your daughter is doing well now. We are also going the homeopathic route, too. I'm just getting used to taking the out the credit card- it's like monopoly money:)

I know the battle all too well...although I have to say I had much better luck with HPHC than with BC/BS of MA. BC/BS of MA would only approve infusions for low IgG levels. Are you doing IVIg through Dr. B? Because he got DD approved for 3 infusions two years ago through HPHC when my MA doctors could not -- DD's IgG levels were high this time because of prior infusions however she failed most of the Strep Pneumoniae Serotypes, IgG (14 subtypes). DD had many infusions in 2008-2009 at CHB and they were covered by HPHC, but she had low IgG levels.

 

We had Tufts PPO many years ago and it was horrible. I had to fight for EVERYTHING. So check it out carefully before going with Tufts. I am considering going back to BC/BS now that DD no longer needs IVIg. BC/BS covered my integrative doctor whereas HPHC won't cover an integrative doctor under any circumstance (not even standard lab tests).

 

We have been battling with Harvard Pilgrim for six months. It's been an exhausting, futile fight. I know many families are familiar with this nonsense. I will gladly switch jobs (I am a teacher) for an insurance co. that will support IVIg for my daughter. United Healthcare does not seem to be very present in MA. I have the opportunity to switch to Tufts if I take a different position. I love my school and job, but I love my daughter more. Any success for CVID or PANDAS diagnosis for IVIg with TUFTS? We've put two on credit card (amazing how credit cards companies will just increase the limit...) but we are at the end of our ability to do this.

Appreciate any advice or feedback. Thanks so much.

 

I could also decrease the time at my current job, so I lose my insurance- we'd then default to my husband's insurance which is BCBS MA.

[NancyD]

HPHC has changed their policy a few times re IVIg for PANDAS over the years. It's crazy...one year PANDAS is included, the next year it's excluded, the next year it's included, now it's excluded again. I would think you could fight this. Have you tried going to the state insurance commission? That was where I was headed just before Dr. B got us approved based on low serotypes. I don't know if you'll do any better with BC/BS -- they consistently denied IVIg for PANDAS. They would only cover it for low IgG levels.

 

Hi Nancy- Harvard Pilgrim has recently changed their policy. PANDAS is now on the excluded list for IVIg, as the treatment is considered experimental. DD's IgG levels are fine, but Serotypes are not. HPHC saw through all of this, and they are not fighting fair (though I'm beginning to understand that this is the norm). Tufts, though, does not sound like a better option. Maybe BCBS?

Thank you so much for replying. It's a big decision, so I'm trying to arm myself with the best information.

I hope your daughter is doing well now. We are also going the homeopathic route, too. I'm just getting used to taking the out the credit card- it's like monopoly money:)

I know the battle all too well...although I have to say I had much better luck with HPHC than with BC/BS of MA. BC/BS of MA would only approve infusions for low IgG levels. Are you doing IVIg through Dr. B? Because he got DD approved for 3 infusions two years ago through HPHC when my MA doctors could not -- DD's IgG levels were high this time because of prior infusions however she failed most of the Strep Pneumoniae Serotypes, IgG (14 subtypes). DD had many infusions in 2008-2009 at CHB and they were covered by HPHC, but she had low IgG levels.

 

We had Tufts PPO many years ago and it was horrible. I had to fight for EVERYTHING. So check it out carefully before going with Tufts. I am considering going back to BC/BS now that DD no longer needs IVIg. BC/BS covered my integrative doctor whereas HPHC won't cover an integrative doctor under any circumstance (not even standard lab tests).

 

We have been battling with Harvard Pilgrim for six months. It's been an exhausting, futile fight. I know many families are familiar with this nonsense. I will gladly switch jobs (I am a teacher) for an insurance co. that will support IVIg for my daughter. United Healthcare does not seem to be very present in MA. I have the opportunity to switch to Tufts if I take a different position. I love my school and job, but I love my daughter more. Any success for CVID or PANDAS diagnosis for IVIg with TUFTS? We've put two on credit card (amazing how credit cards companies will just increase the limit...) but we are at the end of our ability to do this.

Appreciate any advice or feedback. Thanks so much.

 

I could also decrease the time at my current job, so I lose my insurance- we'd then default to my husband's insurance which is BCBS MA.

[thenmama]

Something seems fishy-- it's still in the covered category in the most recent HPHC IVIG medical policy I could find. Did they quote a new IVIG medical policy in your denial, or did they send a summary of changes/modifications to covered benefits for your plan that reflected this change? Have you gotten a copy of the case records and all materials, guidelines, protocol, etc. they referenced in making their decision? If so, what's the last date of revision on the IVIG policy? I'd definitely push on this one and if you've hit the limits of your ability to pursue it (or your energy for it-- this stuff is such a drain at a time none of us needs another obstacle, or stressor!) I'd second Nancy's suggestion and go to your state bureau of insurance or ombudsman (if your plan is fully-insured) or to your company's HR department (if it's funded by your employer).

 

The thing to remember about insurance is that it's not really about providing health care or benefits; it's really a system of limitation and denial-- for the insurance company's profit if you have a fully-insured contract, or for your employer's financial benefit if you have employer-funded benefits. Sure, some are better than others about covering what they're supposed to, but my guess is it's more common or likely that switching plans winds up being a lateral move (or potentially a downgrade--as we experienced when we moved here). Also, so many things are dependent on specific circumstances and how individual plans and policies are structured-- so an insurance company/TPA that's fabulous for one family might be terrible for another, depending on the specific plan or benefit package, if it's an employer-sponsored plan or a plan purchased from the insurance company (who bears the risk/pays the claims), and the particular staff responsible for processing your group's claims, etc. So I'd just be cautious about jumping ship without taking things as far as you possibly can with this company (especially since it is a company that has precedent for covering it-- your shot may be better there in the long run).

 

There's so darn much to this insurance thing and so much of it is dependent on the individual policy and how it's funded that it's hard to give very specific advice. But if you haven't done any of the following things, I'd start with these: 1. find out whether you have a state or federally regulated plan (is it purchased from the insurance company or does the insurance company just administer/manage claims for your employer?) 2. if you haven't requested the case records from the insurance company request them 3. if your plan is fully-insured, contact your state ombudsman and/or BOI for help; if it is employer-funded, contact the employer (start with HR if you're not sure where to direct your questions)

 

Anyway, wish I could provide more targeted advice, it's just hard to know what to suggest because everyone's situation is so different. Feel free to ask specific questions, though.

[pandas mom]

Something seems fishy-- it's still in the covered category in the most recent HPHC IVIG medical policy I could find. Did they quote a new IVIG medical policy in your denial, or did they send a summary of changes/modifications to covered benefits for your plan that reflected this change? Have you gotten a copy of the case records and all materials, guidelines, protocol, etc. they referenced in making their decision? If so, what's the last date of revision on the IVIG policy? I'd definitely push on this one and if you've hit the limits of your ability to pursue it (or your energy for it-- this stuff is such a drain at a time none of us needs another obstacle, or stressor!) I'd second Nancy's suggestion and go to your state bureau of insurance or ombudsman (if your plan is fully-insured) or to your company's HR department (if it's funded by your employer).

 

The thing to remember about insurance is that it's not really about providing health care or benefits; it's really a system of limitation and denial-- for the insurance company's profit if you have a fully-insured contract, or for your employer's financial benefit if you have employer-funded benefits. Sure, some are better than others about covering what they're supposed to, but my guess is it's more common or likely that switching plans winds up being a lateral move (or potentially a downgrade--as we experienced when we moved here). Also, so many things are dependent on specific circumstances and how individual plans and policies are structured-- so an insurance company/TPA that's fabulous for one family might be terrible for another, depending on the specific plan or benefit package, if it's an employer-sponsored plan or a plan purchased from the insurance company (who bears the risk/pays the claims), and the particular staff responsible for processing your group's claims, etc. So I'd just be cautious about jumping ship without taking things as far as you possibly can with this company (especially since it is a company that has precedent for covering it-- your shot may be better there in the long run).

 

There's so darn much to this insurance thing and so much of it is dependent on the individual policy and how it's funded that it's hard to give very specific advice. But if you haven't done any of the following things, I'd start with these: 1. find out whether you have a state or federally regulated plan (is it purchased from the insurance company or does the insurance company just administer/manage claims for your employer?) 2. if you haven't requested the case records from the insurance company request them 3. if your plan is fully-insured, contact your state ombudsman and/or BOI for help; if it is employer-funded, contact the employer (start with HR if you're not sure where to direct your questions)

 

Anyway, wish I could provide more targeted advice, it's just hard to know what to suggest because everyone's situation is so different. Feel free to ask specific questions, though.

Edited June 5, 2012 by pandas mom

[thenmama]

Hi ThenMama,

I'd like to send you a personal message, but I'm not really sure how to do that. Here's my email:

Thanks!!

 

I'll email you now and will reference the forum in the subject line so you'll know it's me. I've got your address, so you may want to edit your post now to remove your personal email address from the public's view.