Home Infusion

Once again my insurance company has decided I can't go to my current Remicade infusion provider. They are pushing for me to switch to home infusion, in fact the only provider is home infusion. I don't have a place to do home infusion and so I went onto the insurance companies provider site and found a covered infusion clinic. I called and made an appointment for after my cut off date and thought I was all set. (Note: I called and double checked with the insurance company that it was a place I could use) Today, I receive a call from the home infusion place telling me I have to use them. Then, I call the insurance and though they said the other place is covered, now they say I must use this new company. I am so confused now. On top of that they are telling me they think my infusion that is in two weeks won't be covered even though the change letter says October 1. I don't know what to do now. I am just really frustrated, they do this to me at least once a year and the care provided is worse and worse. My entire arm is covered in bruises from the infusions and I am tired of doing this. Ugh, anyone else have these issues?
I suffer from UC
400mg Remicade/4 weeks
100mg Imuran/day
Just got out of an 8 month long flare up of UC and RA

My insurance tried to push the home infusions on me also. I told them I didn't feel comfortable because the medication made me feel dizzy and I would like to be at the hospital to receive them. They did not fight me on this. It could be worth a try.

I also got a port placed to help with my infusions because my veins were starting to get so bad. The charge nurse suggested it to me and my doc was on board. I got it within a week of talking to the charge nurse. For me it was taking multiple tries to get an IV and I would often have to switch arms halfway through the infusion because my entire arm would go numb. I believe my port is another reason I can get away with hospital infusions, they have to be accessed in a sterile environment and I am sorry but my house with my three animals is not that.

You may be able to talk to the nurses or your infusion provider about this, they may have some better advice for they see it more often?

Where do they put the port? Do you find you have had any issues with it and does it interfere with your daily routine at all? I had been thinking about that recently because I have had multiple visits where it takes two nurses and up to 7 or 8 tries to get a vein. If a new nurse is there it inevitably takes multiple tries, nerves hit (ouch), and a supervisor. And every time the nurse will tell me they are a master at getting a vein. It's like you can be as much of a master at it as you want, my veins are terrible!
I see my GI today so I am hoping he can give me some advice as to what to do.
And I am still waiting to hear back from the other providers and get in touch with the insurance again. Their system was down yesterday for almost the entire day.
Thanks for the advice!

hippos78 said:

Where do they put the port? Do you find you have had any issues with it and does it interfere with your daily routine at all? I had been thinking about that recently because I have had multiple visits where it takes two nurses and up to 7 or 8 tries to get a vein. If a new nurse is there it inevitably takes multiple tries, nerves hit (ouch), and a supervisor. And every time the nurse will tell me they are a master at getting a vein. It's like you can be as much of a master at it as you want, my veins are terrible!
I see my GI today so I am hoping he can give me some advice as to what to do.
And I am still waiting to hear back from the other providers and get in touch with the insurance again. Their system was down yesterday for almost the entire day.
Thanks for the advice!

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Mine is in my right shoulder, right below my clavicle. It was strange at first, it felt like when I would move my shoulder the port would pinch between my shoulder and collar bone. It has since loosened up and I don't notice it is there until it comes to only one poke for my infusion!

I was really nervous go get it, but now I never want to get rid of it!!

Thanks for the info! I am definitely going to ask about this, the idea of not getting getting sticked a ton of times every infusion sounds magical! And as an update, I did get them to approve me going to a site, though I still have to use their Pharmacy to have the Remicade delivered. So, hopefully that all works out. These changes are always so stressful, since I know if I miss the likelihood I will flare is so high!

My son just moved to another city and the nurse just called him and said that his insurance wanted him to do home infusion too. I had never heard that was an option. I'd like him to continue to go to an infusion center. Sounds like insurance companies are pushing home infusions now.

Does anyone have positive experiences with home infusions?

I would think that having any reaction or difficulty with venous access would be a persuasive reason to not have a home infusion.

That is why I have never wanted to do it. My infusion center is at the hospital; if I do have a reaction I know I am in good hands. And seeing as I do tend to react if I do not have my premeds it makes me nervous.

And not to be unfriendly but I don't want a stranger in my home sitting on the couch next to me for three hours during the infusion!

I have the same feelings about home infusion. There are so many issues that can occur. I most definitely prefer a medical setting, it's sterile, there is typically more than one nurse on site, in case there is a problem, and I just don't want a stranger sitting in my home. On top of that, having a roommate makes it feel like an invasion of my health care privacy and their living space privacy.
It's all about how the insurance company can save money. I'm all about saving money, but not at the cost of the quality and safety of the healthcare provided.

You are right there unfortunately. I know my insurance wanted me to switch because the hospital upcharges the medication cost so much. The medication alone is over ten thousand dollars for me every infusion. Thankfully due to my insurance and the remistart program I do not have to pay this ridiculous cost. But they say if I went through a private pharmacy the cost would be much less for them.

Yes Remistart! They have saved my wallet, I am pretty sure I would not be able to afford this therapy if it wasn't for them!

I mentioned home infusions yesterday while at my infusion (at a hospital-based clinic)...from what the nurses there know, home infusions are not approved in NY State at this time....I haven't confirmed that yet.....

I thought others might be interested in this. This is from Aetna (a major insurance co in the U.S)

Site of Care

The first dose of the medications subject to this policy may be given at the physician’s facility of choice. This includes hospital outpatient facilities, non-hospital outpatient facilities and home care.

All subsequent doses will be subject to the Aetna Site of Care for Drug Infusion Management policy, which requires the use of non-hospital outpatient facilities or home infusion when clinically appropriate.

Clinical rationale and documentation must be provided for review of Medical Necessity exceptions. Criteria for Medical Necessity [of hospital outpatient facility for Remicade infusion]

Aetna considers hospital outpatient facility medication infusion medically necessary for members that have been documented as meeting one or more of the six criteria below:

Member is medically unstable for infusions at alternate levels of care as noted by any of the following:

Documented clinical history of cardiopulmonary conditions that may cause an increased risk of severe adverse reactions

An inability to safely tolerate intravenous volume loads, including from unstable renal function

Unstable vascular access

Physical or cognitive impairments such that home infusion would present an unnecessary health risk

Member is initiating therapy.

Member is reinitiating therapy after not being on therapy for at least 6 months.

Member has a previously documented severe or potentially life-threatening adverse event during or following infusion of the prescribed drug, and the adverse event cannot be managed through pre-medication in the home or office setting.


If the member does not meet any of the above criteria, and the proposed hospital outpatient facility is considered a least costly site of care, hospital outpatient infusion would be approved.