Transitioning to Home Healthcare for Infusion Medication

As a Crohn’s patient, I was prescribed my first biologic in early 2016, just a few months after my official diagnosis. When it came time to navigate logistics, I was told that I would come into the doctor's office once every eight weeks, and spend 2 hours in the infusion suite, usually next to other infusion patients.

The room was small and crowded, there was no privacy and usually no quiet, and the nurse who managed the center always struggled to get a good vein to place my IV.

The entire experience was rather stressful and knowing what I know now would’ve helped me so much to advocate for myself and also to know that there were other ways and places that I could go to get my medication administered.

A new infusion center

Less than a year later, I switched biologics from one that was gut specific to one that was somatic (targeting inflammation in the whole body) as I had also been diagnosed with rheumatoid arthritis and needed one medication to manage both conditions. This time, I knew that the infusion suite at my doctors office wasn’t going to cut it, so I did some research.

I found a few independent infusion companies that had offices within about 30 minutes of where I was living at the time. My husband and I went and visited them, noting the things that were important to us (having my own space, ideally being in a solo room rather than in a row of chairs, less patients per nurse meaning more attention was being given to each patient, etc.) and I selected the infusion center closest to us. It didn’t have everything I wanted in terms of the list above, but the quick and easy Uber/cab ride meant that I didn’t always need to rely on someone else to take me and bring me home. And the cut down in travel time increased the amount of time I had to rest.

Also, by this point my doctor had ordered and I had undergone a procedure to insert a port-a-cath under my right collarbone, eliminating the need to find viable IV veins. This act alone reduced my infusion anxiety significantly!

Transitioning to home healthcare

I used this infusion center for about nine months before I was recommended to a brand new center coming in near us. Now this new place has everything I could’ve asked for and then more - including clean blankets and pillows for patients who want to nap, private rooms with closing doors, 1:1 nurse to patient care, snacks, etc. It felt like a luxury hotel experience where I also happened to have an IV pole and receive life sustaining medication.

When the pandemic started in March of 2020, my infusion center transitioned their immunocompromised patients (myself included) to home healthcare, reducing the amount of face to face contact and proximity to other patients and individuals who might be carrying the infection. The infusion center staff provided a great deal of support in trying to prepare for this transition, and they offered to help wherever they could.

I've now been receiving my infusions at home for the last four years. So, I wanted to pass along anything that might help you to ask questions or to go right into switching infusion operations.

Now, if I’m a community member like you who has never thought about or been offered the option of switching from an infusion suite or center to at home healthcare might have several questions to ask - l’m hoping this series of FAQs can clear up a lot of answers for you!

Home infusion FAQs

How do I start the process of transitioning my infusion care?

Start by talking to your doctor about your options, and get their approval that it’s safe for you to be receiving your medication at home, rather than in a medical facility.

Ask your provider to send an updated prescription to your insurance going through the home health agency you’ve chosen/is available to you, noting that the medication and dose are not changing, just the location of distribution.

Call your insurance company using the member services number on the back of your card to ensure that home healthcare is a service included in your coverage.

Determine from your insurance company if using home healthcare requires any additional prior authorizations or referrals. The last thing you’d want is for your medication to be delayed because the company cannot find a prior authorization for you.

How do I find/choose a home healthcare provider?

In my experience, there are two ways to go about this. First, ask your insurance for a list of infusion companies providing at home care for your specific medication. Then, narrow down your choices by distance or whatever else it is that is important to you.

Alternatively, you can research any of the home healthcare providers in your area, call them, and start the call by determining if they are within your coverage plan.

How can I prepare my space?

Think about where you’ll be doing the actual infusion - in your bedroom, in the living room on the couch, in your office, and create a setup there. You’ll need some sort of organizer to store your infusion supplies, a flat top surface for your nurse to start your IV or access your port, a clear pathway to take your IV poll from where you’re sitting to the restroom and back again, and if you’re not napping, you’ll likely want something to do during the infusion - ie: watch TV, read, knit, work on a hobby, journal, etc.

The possibilities here are much more extensive than at an infusion center because a) it’s you own space and b) you don’t have to pack up and travel around with this stuff as if you were going to some sort of provider's office.

How can I prepare for the actual infusion?

Just like when you were to get your infusion at a center or a doctors office, you still want to hydrate well. This helps your body to navigate the stress it’s being put under.

Pay attention to the process - although you likely won’t be administering your own medication, it always gives me piece of mind to know the steps that the nurse will walk through from arriving until leaving our house.

Work with the home healthcare company and you specific nurse to set a schedule of when and how frequently you’ll be getting these infusions, and ensure that the company will deliver the medication and supplies necessary just a few days before your scheduled infusion.

Question for the reader

Have you ever/do you currently use home healthcare routinely for IBD medication? I’d love to know if there’s anything you’d add to my FAQ list, and how your experience has been up until this point.