My husband had a transplant eight years ago. He was put on belatacept infusions. We are looking to do traveling in our camper for longer than four weeks at a time out of state. I hate to say this but, his team hasn't been much help. So I'm turning here to ask the question... Do any of you on this medication travel out of state longer than four weeks? If so how do you set up your infusion's. It seems so weird to me that I can't seem to find much information on this. He can't be the only guy in the US that had a transplant, and wants to travel away from his home infusion site long then four weeks. He had a great coordinator in the beginning, which he said when that time comes I'll set it all up for you. Now he has a new one, that said she'll try, and help but I need to find the centers and they'll contact them. Visited with both of his doctors, they said they have contacts with doctors in some other states but we may have to make appointments with them. They both said they don't have any other patients that want to travel, so they don't know what to tell us. They offered to put him back on oral meds, but we all agree why mess with something that is working. So I'm on a mission to try and figure this out. I know this is a long post so thanks if you have read it to the end.
Belatacept infusion while traveling. - Kidney Transplant
Belatacept infusion while traveling.
Have you checked with your insurance company to see if they will cover the infusion at the hospital of the place you are visiting?
Yes, I have checked most places are covered.
I think the issue may be logistic, not lacking supplier. The infusion is a "medical service" that requires a contracted physician's order. The physician needs to have privilege to order the service in that facility. I am not sure your doctor can pick up the phone to call hospital A to give it to you if your doctor is not an affiliated medical provider there.
Thank you, his doctors didn't say to much about this. But they did say they had contacts in a few cities. We may need to visit their offices.
hi, I would try finding stand alone infusion centers in the places you will be camping near. Metro has many and I know there are Infusion Center locators. I have not traveled longer than 8 weeks so not sure what my team would do. Try locating an infusion center and find out what they need to infuse.
Good luck
Thank you for the link and your thoughts. Every little bit helps. Can I ask... do you go 8 weeks between infusions? My husband has his every 4 weeks. If he could stretch his out to 8 weeks that would really help. They never suggested that for him.
No, I have never gone 8 weeks. I have never varied my schedule
Thanks I miss understood your post.
I would suggest two ideas:
1. Contact an infusion center near where you'll be and check that they offer Belatacept. Then ask what they need to provide an infusion for your husband. This is what I did when Eveusheld was so difficult to obtain. I found it was avaiable at an infusion center over 100 m away, and then had my neph send an order all the medical information needed and I registered with all my insurance, etc. It was a hassle but it worked at a time when my transplant center was only giving Evusheld to those transplanted within the past 6 m.
2. If that doesn't work, call the transplant center at Emory University. That is where Belatacept was first introduced and that center probably has the largest percent of transplant patients taking Belatacept rather than tacrolimus, so it is probably most experienced at the issue of receiving the infusions while travelling.
Please update us on what you learn. I also am on Belatacept and would like to know what to do if I travel. Thanks and good luck.
Well that is stupid, people on dialysis travel and have dialysis set up in other centers or hospitals, so what is the big deal.Tell them to get off their butts and arrange something.
I would like too! I think his new coordinator isn't as informed as some. And like a lot of places under staffed.
This is a great question and discussion. I’m only 9 months post transplant and on Belatacept infusions. I’m planning to travel for longer periods in the future so finding an answer is important. Emory is my transplant center and I will be seeing my transplant nephrologist this Friday, I will try to get answers from him.
I wonder if different transplant centers handle this differently? It may be a great question for your team. Maybe you'll be the one that gets the right information, that could help anyone that is in this situation.
I am very interested in this too! I have been on Belatacept since 2016 and was told I can move my infusions by one week, both earlier and later, if needed. But I want to know if I can, say, spend time with family and friends for a couple months at a time out of state, or even out of country (UK). @Mydaughtermyhero after reading what @Transplant2018 pointed out about Belatacept originating at Emory I am interested in what your transplant nephrologist says on Friday.
We will wait to hear from Mydaughtermyhero fingers crossed we learn something!
Unfortunately, any extension of the between-infusion time means patients are getting inferior protection. The one month maintenance protocol was designed based on pharmacokinetic studies and is required to maintain adequate protection. If you must skip a month, your doctor will likely ask you to increase the dose of other immunosuppressants or add a new one to "tie it over".
I just checked with Kaiser, my health insurance provider, and they will only pay for a Belatacept infusion if I receive it at a Kaiser facility (wherever they are in the US). They only cover emergency and urgent care at non-Kaiser facilities while traveling. I asked the Kaiser member services representative to "escalate" (their word) this through their office to see if they could make an exception. I doubt it but we'll see.
My husband is on Medicare along with his blue cross blue shield. I don't know if you know this. But, you can go on Medicare before you are 65 if you are in kidney failure/transplanted? If not google it. He was put on that when he had the transplant. So that is his primary insurance. Then our secondary insurance kicks in. When I called Medicare, they said if they take Medicare he is good to go.
Thanks for making sure I knew about Medicare. That's great that your husband's meds are covered. Although I've been on Medicare in the past my post-transplant coverage has expired and I'm no longer eligible.
Well I saw the transplant nephrologist at Emory this morning for my 9 month follow up. I asked about the possibility of having the Bela infusion at another center when traveling. His answer was that it is possible but complicated with paperwork and insurance approvals. He has done it for patients by contacting major medical centers in other cities who offer the protocol. So you would have to have a nephrologist willing to do some work which he said is part of their job.
Some promising information he shared is that they are doing trials to bring a weekly self injected version of Abatacept to market for transplant recipients. It’s a couple of years off but something to hope for.
Great information! Funny I called there about a hour ago asTransplant2018 suggested , and talked with a coordinator, and she told me that it is very difficult, and they usually put patients back on oral meds. if they want to travel. Due to the fact of having to find doctors that will take on the responsibly for one month here, or there. Lab's that need to be done first ect... She said people have better luck like snow birds, that stay in one place. I do have a call into my husband's coordinator, as I looked at some of the infusion site's suggested by Bouvierlover2 but, would probably have to start calling them because their site's don't list belatacept. My husband's doctors said they do have some connections in some different states. So, I think I will try, and work with them at this point even if it means a detour. If we were staying in one place this may be a easier task. If this next step doesn't pan out, my husband said he will just fly home if he has to. Thanks for the update. I will still post if I get this figured out. Stay heathy!
Please don't worry if he has to increase other oral medication for just a month or two. The efficacy should work out to be the same, and it is much more convenient than relying on the unfamiliar system in a foreign city. The issue is complex because of liability issue. It is difficult to get a new doctor who has never seen the patient to take that liability no matter how small the infusion risk is.
Thanks for reporting back. Great to know about the development of Abatacept.
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