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01-28-2016, 12:35 AM   #1
PSPH16
 
Join Date: Jan 2016
Location: Fremont, California
Insurance woes

Hello,

I have newly joined this forum for my son who suffers from poly articular RA and Crohn's disease. After treatment failures with Enbrel and Humira, he was put on Remicade since early 2015. The infusions were going on as planned until October 2015 ,when my insurance changed from Anthem to BCBS MA.

Since then, I have encountered a host of problems, most notably the insurance denying Remicade to be infused in a hospital setting. Despite this denial, my insurance says that it is willing to cover Remicade if purchased via one of their specialty pharmacies and infused at home. I don't understand how remicade can be infused at home?? Given its laundry list of side effects/possible allergic reactions, how can one receive it anywhere but a hospital setting?

I sent in an appeal to the insurance company and my son's GI did the same, but to no avail. Has anyone encountered such a situation? How to coerce the insurance into covering for my son's remicade?
01-28-2016, 12:47 AM   #2
Justanothercp
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Wow, never heard of this. Are they planning on sending RN out to infuse at home?

Sounds like they just want to get it out of hospital setting so they can charge specialty drug rate for it. This is scary. I look forward to hearing others input.
01-28-2016, 12:57 AM   #3
ronroush7
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When I was on Remicade, it was in a hospital setting.
01-28-2016, 07:24 AM   #4
Clash
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In the US, especially in rural areas, home infusions can be common. Usually, a nurse trained in the type of infusion comes out, runs the infusions and monitors the patient. The people that I have spoken to say that the nurse has all of the things such as solumedrol, epi, etc that are standard in an infusion center in case of reaction.

My son never had in-hospital infusions as his GI group has an IV center in office. Also, in some areas there are stand alone iv centers that do remicade infusions.

The cost between a hospital infusion and an off site infusion (like at a GI office or stand alone center) can sometimes be alot. The hospital is always higher.

Maybe you could ask about iv centers in the area?

There used to be several members on here that did home infusions though I don't remember their user names and it's been awhile since those posts.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-28-2016, 10:17 AM   #5
Madhu
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Hi, have you looked at Remistart? I think it might help when your insurance doesn't.

Link - http://www.remistart.com/
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
01-28-2016, 11:11 AM   #6
ronroush7
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Hi, have you looked at Remistart? I think it might help when your insurance doesn't.

Link - http://www.remistart.com/
It helped me.

01-29-2016, 01:32 AM   #7
tots
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I go to an infusion center, not a hospital.
Hopefully thats possible for you.

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
01-29-2016, 10:53 PM   #8
PSPH16
 
Join Date: Jan 2016
Location: Fremont, California
In the US, especially in rural areas, home infusions can be common. Usually, a nurse trained in the type of infusion comes out, runs the infusions and monitors the patient. The people that I have spoken to say that the nurse has all of the things such as solumedrol, epi, etc that are standard in an infusion center in case of reaction.

My son never had in-hospital infusions as his GI group has an IV center in office. Also, in some areas there are stand alone iv centers that do remicade infusions.

The cost between a hospital infusion and an off site infusion (like at a GI office or stand alone center) can sometimes be alot. The hospital is always higher.

Maybe you could ask about iv centers in the area?

There used to be several members on here that did home infusions though I don't remember their user names and it's been awhile since those posts.
Thank you Clash.:-) My son's GI and I are in the process of finding independent infusion centers. But BCBS has another clause that must be met: they want Remicade to be purchased only through one of their specialty pharmacies. Many of the infusion centers that I looked at were not open to such an arrangement. So, the search is still ongoing.

By the way, if I may ask, where do you obtain the remicade from for your son's infusions? Are specialty pharmacies the norm??
01-29-2016, 11:08 PM   #9
my little penguin
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Specialty pharmacies are the norm for humira which means the drug is covered by prescription copays and not medical insurance the difference in your cost is quite high
Remicade when done at a hospital or infusion center is considered a procedure where a drug is administered ( happens to be remicade ). No different than an endoscopy where they give your child other drugs . With this your medical insurance covers x% and you cover y% with the help of remistart.
When you switch to at home then it would go through durable medical equipment I assume for the pump etc and the drug from your specialty pharmacy which is a much higher rate and not counted towards your medical deductible only pharmacy deductible .

At home they are not equipped to handle anaphylaxis period .
Steriods and Benadryl are not the same as handling anaphylactic shock.
Even satellite offices are not equipped .
My kiddo has life threatening food allergies as part of figuring out if you have outgrown a food allergy - a food challenge is done ( feed small amounts of the food over time to see if there is a reaction )- not permitted to be done in a satellite office setting - only the hospital because they can handle anaphylactic shock if necessary
A nurse and a few steriods can not .
So not worth the risk
My kiddo had two reactions to remicade both were at an infusion center located within the hospital .
His were minor but he was already on two antihistamines for both reactions ( premedicated) plus in steriods for the second one and still reacted .

But he has had anaphylaxis at home due to food
I had to give him an epi pen
Thankfully it stopped the reaction because the ambulance took 20 minutes to get there
Without the epi pen he probably wouldn't be here

Not trying to scare you but remicade is known for its allergic reactions even in none allergic people.

There is a reason hospital are more expensive and a reason life saving equipment /many trained people are near by
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01-30-2016, 08:31 PM   #10
PSPH16
 
Join Date: Jan 2016
Location: Fremont, California
Than you ronroush/aarti. I tried the remistart. They told me that if I had difficulty in the insurance covering for the medicine then,they could help me with a part of the cost. My case is where insurance is willing to cover for the medicine only under their conditions. I am unable to convince them to cover for the medication if my son is taken to a hospital. They are OK with covering the medication if administered as a home infusion.

Last edited by PSPH16; 01-30-2016 at 09:02 PM.
01-30-2016, 09:45 PM   #11
Lisa
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Not sure if this is near you, or if your insurance would consider an infusion center..
Www.pamf.org.

What about the first infusion, will they cover that in a health care setting on case there is a reaction? I believe centocor recommends that as the drug manufacturer.......I'd have to look that up though.
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-30-2016, 10:04 PM   #12
PSPH16
 
Join Date: Jan 2016
Location: Fremont, California
Thank you "my little penguin" for explaining to me how billing works for drugs like remicade and for clarifying the role that specialty pharmacies/hospitals play in this whole ecosystem.

In addition, I echo your thoughts regarding the fact that allergic reactions from remicade can happen at any time without warning. Unfortunately, my insurance company has turned a deaf ear to my pleas and a blind eye to these risks. As of right now, they won't budge no matter how many times I reiterate my concerns regarding allergic reactions. I agree that hospitals are in many ways better equipped to deal with the fallout from an allergic reaction, but my insurance company stated outright that they will only cover remicade if I buy it from a specialty pharmacy and have it infused at home.

Speaking of which, would I be able to utilize remistart? You mentioned that when remicade is done in a hospital setting, it is billed as a medical procedure where I must pay y% of the costs and the insurance kicks in their x% of the cost. But in my case, the insurance has denied coverage if the remicade is infused in a hospital, so I would bear 100% of the cost, and the insurance would pay 0%. Would remistart be applicable under such circumstances, or can it only be used to lessen the burden I am responsible for if the insurance is willing to cover a portion of the costs?
02-01-2016, 03:24 AM   #13
nagesh
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Thanks Founder
02-15-2016, 09:20 AM   #14
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Wow, my health insurance (in Europe) ONLY covers when the Remicade is given in a hospital setting Weird.

Hope it all works out!
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