IVIg as Standard of Care?

[Wrong Kind of Panda]

Hi,

 

We've heard that insurance coverage for IVIg is easier to get if standard of care can be substantiated in research papers.

 

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

[LNN]

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

 

I only know of this thread from Canada which specifically approves IVIG for PANDAS

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.

[Wrong Kind of Panda]

Thank you LLM!!

 

I bought the article ($4.95) and it was great! Here's the two summary lines for PANDAS:

 

“In the opinion of the expert panel, it is reasonable to consider IVIG among the options for treatment of PANDAS.”

“Intravenous immune globulin is recommended as an option for treatment of patients with PANDAS.”

 

The opinions are based on review of the research done to date (2006) and "consensus of expert clinical opinion."

 

This study is basically the Canadian national health care policy for IVIG treatments for 20+ conditions, including PANDAS. It's effectively the equivalent of our insurance companies' "standard of care" policies.

 

As we don't have national health care in the USA, our battle is to prove to each one of our insurance carriers that IVIG should be covered for PANDAS.

 

Where is our equivalent of "consensus of expert clinical opinion?" Can Drs. T, K, L, etc. please help with this? Can we start seeing some more published studies that recommend IVIG as Standard of Care?

 

I'm thinking the Pharmaceutical companies would have a vested interest in seeing IVIG treatments covered by insurance. Some one posted that Baxter has a finance plan for off-plan treatments. Does anyone know how to approach them? Call the switchboard?

 

Clearly we have a long way to go before our kids are able to get the treatments they need from insurance companies. I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up.

 

Thanks for listening!

[peglem]

I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up.

 

They need to see that its cheaper to do IVIG than to provide a lifetime of ineffective psych meds.

[PANDAS_Denmark]

Thank you LLM!!

 

I bought the article ($4.95) and it was great! Here's the two summary lines for PANDAS:

 

“In the opinion of the expert panel, it is reasonable to consider IVIG among the options for treatment of PANDAS.”

“Intravenous immune globulin is recommended as an option for treatment of patients with PANDAS.”

 

The opinions are based on review of the research done to date (2006) and "consensus of expert clinical opinion."

 

This study is basically the Canadian national health care policy for IVIG treatments for 20+ conditions, including PANDAS. It's effectively the equivalent of our insurance companies' "standard of care" policies.

 

As we don't have national health care in the USA, our battle is to prove to each one of our insurance carriers that IVIG should be covered for PANDAS.

 

Where is our equivalent of "consensus of expert clinical opinion?" Can Drs. T, K, L, etc. please help with this? Can we start seeing some more published studies that recommend IVIG as Standard of Care?

 

I'm thinking the Pharmaceutical companies would have a vested interest in seeing IVIG treatments covered by insurance. Some one posted that Baxter has a finance plan for off-plan treatments. Does anyone know how to approach them? Call the switchboard?

 

Clearly we have a long way to go before our kids are able to get the treatments they need from insurance companies. I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up.

 

Thanks for listening!

 

Hi Wrong Kind of Panda,

 

Thank you for bringing the summary !

Do you mind sharing where you found the article at $4.95

 

Best wishes

PANDAS Denmark

[matis_mom]

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

 

I only know of this thread from Canada which specifically approves IVIG for PANDAS

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.

LLM,

I have Cigna too and it looks like we are heading for IVIG... Would you mind sharing if you've already done it and if and how you managed to get it covered? I have to say so far I am very please with the coverage as far as meds and out-of-network doctors go.

 

You can PM me if you prefer.

 

Thanks!

 

Isabel

[Wrong Kind of Panda]

Thank you LLM!!

 

 

 

Hi Wrong Kind of Panda,

 

Thank you for bringing the summary !

Do you mind sharing where you found the article at $4.95

 

Best wishes

PANDAS Denmark

 

Sure, PANDAS Denmark:

 

I used the link LLM provided: http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

Then I followed the prompts to register and purchase the article. Took an hour or so to work, then I had it. I had to sign a usage agreement, and although I'm allowed to share with my doctor, family, etc., I'm not sure I can just post the whole study here. Also, it's really long, and the PANDAS part is really small.

 

Good luck, and let me know if you have trouble.

 

Thanks!

[LNN]

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

 

I only know of this thread from Canada which specifically approves IVIG for PANDAS

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.

LLM,

I have Cigna too and it looks like we are heading for IVIG... Would you mind sharing if you've already done it and if and how you managed to get it covered? I have to say so far I am very please with the coverage as far as meds and out-of-network doctors go.

 

You can PM me if you prefer.

 

Thanks!

 

Isabel

 

Cigna covered our Pex.

http://www.cigna.com/customer_care/healthc...smapheresis.pdf

CIGNA covers plasmapheresis as medically necessary for ANY of the following conditions:

 

• pediatric postinfectious autoimmune neuropsychiatric disorders (PANDAS) associated with streptococcal infections and Syndenham’s chorea (severe exacerbation)

 

It's coverage of IVIG isn't as specific:

http://www.cigna.com/customer_care/healthc...venous_IGIV.pdf

It seemed like it would require more hoop jumping and since we were battling serious tic issues, we were leaning toward pex anyway. So we opted to not fight the IVIG hurdles. But if you print this out, it may help your doctor in making the argument for coverage.

 

If you're successful, please let me know. We have seen good results with pex overall, but my son remains sensitive to strep exposure. He's not "cured". So if he were to tank again, IVIG would be a consideration.

[matis_mom]

Cigna covered our Pex.

http://www.cigna.com/customer_care/healthc...smapheresis.pdf

CIGNA covers plasmapheresis as medically necessary for ANY of the following conditions:

 

• pediatric postinfectious autoimmune neuropsychiatric disorders (PANDAS) associated with streptococcal infections and Syndenham’s chorea (severe exacerbation)

 

It's coverage of IVIG isn't as specific:

http://www.cigna.com/customer_care/healthc...venous_IGIV.pdf

It seemed like it would require more hoop jumping and since we were battling serious tic issues, we were leaning toward pex anyway. So we opted to not fight the IVIG hurdles. But if you print this out, it may help your doctor in making the argument for coverage.

 

If you're successful, please let me know. We have seen good results with pex overall, but my son remains sensitive to strep exposure. He's not "cured". So if he were to tank again, IVIG would be a consideration.

Thanks! I'll keep that as a reference and let you know if we go through with it. Looking at the list of illnesses they DO cover it for, I don't see how my son could fit the criteria, but we'll see...

[EAMom]

I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up.

 

They need to see that its cheaper to do IVIG than to provide a lifetime of ineffective psych meds.

 

Or a stay in the psych. ward...

[tapiash]

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

 

I only know of this thread from Canada which specifically approves IVIG for PANDAS

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.

LLM,

 

I have Cigna too and it looks like we are heading for IVIG... Would you mind sharing if you've already done it and if and how you managed to get it covered? I have to say so far I am very please with the coverage as far as meds and out-of-network doctors go.

 

You can PM me if you prefer.

 

Thanks!

 

Isabel

 

 

Can you send me a pm and let me know how you were able to get Cigna's approval for an Ivig. I called them and they said it was covered but what they say and what they actually do is questionable.

[Iowadawn]

I'm guessing they would cover it if we could only figure out the best way to convince them. I'm not going to give up.

 

They need to see that its cheaper to do IVIG than to provide a lifetime of ineffective psych meds.

 

Or a stay in the psych. ward...

 

or two or three or more stints in the hospital and a couple partial programs....weeeee$$$$$$

[kimballot]

I just found that Ontario has now included PANDAS in the list of approved IVIG uses in their guidelines from November 2009!!

 

http://www.transfusionontario.org/media/IV...elinesFINAL.pdf

 

 

It seems that many of the anti-IVIG for PANDAS info in the US stems not only from $$ but also from supply issues. I found some info. on people in Arizona who died for lack of IVIG and articles about IVIG being reserved for those with life-threatening diseases, so the ethical issue is also at play with some doctors.

 

 

 

 

Can anyone out there point to studies that site IVIg as "Standard of Care?"

 

Thanks!!

 

I only know of this thread from Canada which specifically approves IVIG for PANDAS

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2

 

My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.