Traveling with SCIg Infusions in the U.S.

Traveling with Primary Immunodeficiency can be Rough

It can be tough traveling these days, with crazy baggage fees, long security lines, and seats that seem to be getting smaller. Throw in the mix that you also have a chronic illness and have to pack specialty medications and supplies with you and now your trip just got that much harder. I had to learn how to travel with my medication right after college. 

My first job after graduating college was a position that introduced me to the concept of being a road warrior. I was flying all over the country, learning a new a role, and trying to stay healthy. Part of staying healthy I learned was being able to travel with my subcutaneous Ig (SCIG) meds and infusion supplies. I will never forget my first trip traveling with my SCIG and supplies. 

I was really nervous for my first trip with infusion supplies and medication because we were living in a post 9/11 world. I had no clue how they would allow small needles, tubing, large bottles (10g) of liquid medication, etc. through security. I walked up, threw my bag on the conveyor belt, and watched it go through the x-ray. 

As my bag came out the other side, a TSA officer asked whose bag it was, and I nervously raised my hand like I had done something wrong. We walked over to the inspection table and they opened my bag. No joke, the thing that flagged me was a laser pointer for presentations. He never even asked about the medication. I was happy to know my medication was safe but became a little more fearful about airport security. 

Since this trip, I have flown at least 200,000 miles and brought my infusions on 25+ trips and I have not once been stopped by TSA on a domestic flight in the U.S. for my medication. This includes TSA Pre and the regular security line. It seems to be a different process overseas because I have been stopped for my infusion supplies. I will share what I learned about international travel in another post, with some additional airport stories. 

Being that I travel so much with infusion supplies, I have gotten some questions about different parts of the process over the years. Here are my answers on how I handle these situations: 

F.A.Q about Traveling

Q: Do I need a letter from my doctor for traveling (U.S. and abroad)?

A: It’s nice to have in your back pocket in case you need a note to prove why you carry around all this extra stuff with you, or in case they try to make you check your bag at the gate. In all honesty, I have only had to mention the letter twice, once at an airport in Belize and another time in London. Click here for a template to use. 

Q: How do you dispose of the needles from your infusion?

A: There are a couple of ways you can dispose of needles from your infusions on the go. Ideally, you can buy small sharps containers to pack with you at Walgreens, CVS, or Amazon. If I did not have one of those there are typically sharps containers in bathrooms at the airport. I have had to use those before on a trip. If that is the case make sure you secure the needles and place them in the box your Ig bottle came out of on this trip until you get to the airport. Last, but not least, I have had to secure the needle set and bring it home to dispose of in your larger sharps container. 

Q: Do you use any special carrying case? 

A: I do not use any special carrying case when traveling with my SCIG. I use a small Tupperware type container to hold all the supplies and put my Ig box in a ziplock bag, with the letter from my physician. While I typically keep my SCIG product in the refrigerator at home, when I travel I keep it at room temperature. There is a great chart that has all the products on it from the Immune Deficiency Foundation that show if your product requires refrigeration. Click here for more information. If it does require it to be cold, I suggest a small lunch box or lined bag to transport. To keep it cold, your Specialty Pharmacy sends GREAT ice packs, throw them in the freezer and use them for travel! When you get to your destination, you may need a refrigerator for your medication, if so make sure you call your hotel ahead of time to make sure they have one in your room.  

Q: Can my medicine go through the x-ray machine? 

A: I put my medication and supplies through the x-ray machine. This tends to stir some controversy, but hear me out. When I started traveling for work I had the opportunity to speak with a representative that made my medication, as well as a leading physician on this very question. Both came back with the same answer, “we do not see any reason why it would affect the efficacy of the product.” There other option is to let TSA know that you have medication that must be hand inspected. This will involve them taking the medication out of the box, but they should not touch the cap on the actual bottle of Ig. I am not advising one option or the other, this is just what I do and my experience in traveling. 

Q: Do you wear a mask on the plane?

A: No, I do not wear a mask on the plane. This is a personal preference for me and something that I have discussed with my physician. With that said, I do carry Clorox wipes with me on the plane and I will wipe down the arm rest, folding tray, and seatbelt. The seat pocket in front of you is also something that everyone touches, so stay away. As soon as I get off the plane, I immediately go to a restroom and wash my hands. Another thing to consider is the air vent above you. I like the air on because I always get hot, but I do not point it at my face, but rather towards my lap or stomach. 

I hope this helps you plan for your next trip. Again, this is just my experiences as a PI patient who travels frequently. I recommend you reach out to your physician if you have any questions or concerns about traveling with your medication. If you travel with your infusion supplies and medication, share what you do in the comments section. I look forward to the conversation!