Let’s Talk Treatments

How to infuse and where to infuse…

I’ve seen a lot of different information online about the various treatment options and venues available to those on immunoglobulin replacement therapy. Some of it was excellent. Others, not so great. So, I am here to talk factually about what other patients are doing and share some of my own experiences with various modes of treatment. 

First, let’s start with the theoretical availability and then go into more detail. I will also talk about cost issues here because that can play a role in what is available to you. Let’s start with most-to-least expensive treatment options, as seen by the average insurer, it is important to remember that anyone on Medicaid and Medicare may not have all options available. Your out of pocket obligation for each mode will vary, depending on your insurance plan. But, generally speaking, this is what I’ve noted in my experience. Of course, this is also dependent on the product used. There are a few sub-q products on the market that are vastly more expensive than others. Price is an entirely different conversation, so there are some assumptions in this analysis. 

IVIG 

Hospital Inpatient – This is, far and away, the most expensive option. In part because of the nature of the beast and the fact that everything is included in this option – not just drugs and nursing. The pros would be the ability to infuse over a very long period of time. Cons include hospital-acquired conditions and the fact that it will be a rare insurance company that would approve you being admitted for your IVIG unless you’ve had really terrible reactions in the past. Not all hospitals are equipped with their own infusion areas. I have heard stories of PI patients doing infusions in the hospital chemo unit. There is also a social aspect of going to the same place every month and seeing the same people. You get to know one another. 

Infusion Center/Suite – These are pricey and the costs are often very hidden from a patient perspective. They have nice, cushy chairs, personal televisions, and sometimes even give you nice sandwiches and ginger ale. A lot of patients find these to be a preferable setting for IVIG because of how nice the amenities are. These can have a significant markup for drugs and facility fees, and that can increase your out of pocket obligation. For people who have a 20% coinsurance, this adds up quickly. In addition, as we’ve seen with the product shortages, these settings have a hard time because they do not have drugs on hand, generally speaking. Infusion suites buy the product from a specific wholesale person, often different than your specialty pharmacy. Now, I know a lot of patients that like the social aspect of doing in the infusion suite, and for patients that have a lot of reactions or do not have the right home set up to do it there, this could be a good option, but know all your options before you commit. I also know some patients that use this venue as a way to get some peace and quiet outside of the house. 

Doctor’s Office – This is not to be confused with a doctor’s infusion suite, which falls under the previous category. This is literally sitting in your doc’s office being infused. This is the method I had and preferred for a very long time until forced to change by insurance. For me, the pros included the fact that I had time scheduled to see my immunologist every month, which was really nice for relationship development and managing my PI. Not for everybody, but it was a great option for me. 

At Home IVIG – At home, IVIG is the most cost-effective way to get your IVIG infusions, because the insurance is paying for just drugs and nursing. No doctors or facility fees. So, it’s just you and a nurse either employed by or contracted through your specialty pharmacy. In the best-case scenario, this is a very flexible option as well, because the nurse will come to your home on a schedule that works for you. In my experience, it was really annoying because I had to change often, based on my nurse’s schedule that would change with little notice. Not all nurses are flexible and for working patient’s it may be hard to get your infusion scheduled after hours or on the weekends. Make sure to ask about scheduling and flexibility, remember you are the customer here, this is not a hospital, it is your home!

Sub-Q

Subcutaneous with a pump - This is one of the most common modes of treatments for patients and a preferred method doctors use for patients who have frequent or severe reactions to IVIG. I know a lot of patients like the flexibility of being able to infuse on the go on a schedule that suits them. Dealing with specialty pharmacies isn’t the best pastime, but it’s worth it for many people to have the flexibility. Sub-q for this method can be dosed daily, weekly, every 10 days, biweekly, or some creative point in between. It’s also very cost-effective for insurance. The pumps that dispense sub-q are much more cost-effective than most IV pumps. The caveat here is that there are some sub-q products which have a multi-step process, and those are significantly more expensive than many of the IV options. Those are currently typically dosed monthly. Flexibility is great, but you need to know that you can hold yourself accountable and do the infusions on time. 

Subcutaneous without a pump – This is also called the Rapid Push or Push method. This is the cheapest of all options for immunoglobulin because there’s no pump involved. It can also be the least time-consuming option, depending on how much volume is involved, how many sites, and how hard you can push a syringe plunger. Some patients do this daily, some 5 days a week, some are able to do it weekly. Again, this is a great option for those who like the flexibility, want to reduce the time involved in infusing, and can ensure they are accountable and get the infusion done on time. 

As you can see, there are many options for patients, and so it’s important to have a conversation with your doctor about what works best for your lifestyle, reaction profile, and preferences. While you are sorting out options with your doctor call your pharmacy benefit manager and/or your health insurance to see what your options are under your plan. Then take those to your doctor and pick the right one for you. 

So what mode are you using? How frequently are you dosing? Did we miss your method here? Tell us more about it! Email hello@immunecompetence.org and share how you infuse. If you send a photo of your infusion setup, it might get featured on our Instagram @pidcompetence!