Travel- how do you get your infusions?

[momsa]

Hi, I'm the mom of college-aged twins. Both of them were diagnosed with Crohn's disease less than a year ago. As if it isn't difficult enough to deal with this new diagnosis, we've been finding the logistics of obtaining infusions for their biologics maddening. My sons go to college in a different state from where we live. They have two doctors, one in each state, but now my sons are looking for internships in yet other states. I'm just looking for some very practical advice.

Question one I have is how do people manage to get their needed medications when they are moving around? Specifically, how do you get the required in-state doctor to oversee your infusions if you are traveling? If we don't have a doctor in the state where one of my sons ends up doing his internship, how do we even arrange that? Waiting lists are long.

My second question is, how do you manage to keep some continuity of care? Apparently there are regulations that don't allow you to meet through telehealth if you aren't in the same state as a particular doctor. So, for example, my sons are only allowed to meet over telehealth with their doctor in their home state if they actually fly home. That's if people are honest about where they are. I'd rather my sons not have to switch doctors all of the time just because they are at an age when they are moving around a lot. Sure, they come home to us regularly - but sometimes we would like to go visit them, and they are in school on the opposite coast, and we're limiting travel particularly with Covid around while on immuno-suppressants. It's even hard to keep continuity of care up with just the two doctors, because even though they are wonderfully collaborative, they end up working with less information than if they were the ones to always do the colonoscopies themselves, and getting offices to send quality images has been hard. Any advice is welcome. Thank you.

 

[Pilgrim]

I have younger children so I can't speak to your particular situation. @crohnsinct and @Maya142 might have good advice as they have college aged kids who are on the move. They will probably chime in.

We live too far from our children's hospital to make infusions at all convenient so what we opted to do was choose Humira over Remicade in the beginning. We monitor inflammation using fcal testing and travel yearly for in person consults, mri, or scopes.

 

[crohnsinct]

I have two college daughters with Crohn's who go to school across the country and go to very remote schools. They just kept their doctor at home and went to see him on breaks. Before Covid, my one daughter who has a difficult case would discuss matters via email and phone conversations and decisions were made that way. But now with Covid they lifted the Telehealth "different state" restrictions and most providers can see their patients even in different states. My easier daughter hasn't seen her provider in person for almost a year! My daughter with the difficult case is actually getting a second opinion via video visit with a doc in another state.

As for infusions we use a home health provider ie: Nu Factor or Option Care etc. They are speciality pharmacies so they ship the drugs to my girls and then send out a nurse to do the infusion in their dorm rooms. It is ridiculously convenient and my girls swear they will never go back to hospital based infusions again. The home health nurses will do infusions at night, on weekends etc and are very accommodating with changes etc. Not having to travel to infusions is super convenient for the kids also. These companies are nationwide so when my girls come home we just make sure to change their locations for shipping and request the nurse near home. Actually Option Care has infusion centers near our home so when home one of my daughters just goes there.

Since the drugs need to be refrigerated, we don't ship to our daughters' dorm rooms as then it goes through the mail room and if it arrives late in the day it might not get processed audit will sit and forget if it is a weekend. So we ship to the school health center and they call my girls and they go down and get it.

Getting a GI close to school wasn't an option for us because the girls are so remote. My one daughter was hospitalized near school and I mean it when I say there wasn't a GI for two hours around the hospital. They literally had a general surgeon and hospitalist managing her care but they were beyond sweet and caring and called our GI everyday for guidance.

I wouldn't want to keep two docs. If I could swing very 6 month or so appointments with my current GI I would do that. Too many cooks…..

Our GI sends lab requests to Labcorp and since they are nationwide, my girls just go to the one by school so no needful a local doc.

I hope this helps.

 

[my little penguin]

Plan is for two docs here maybe
But
One near colleges -Ds actually saw as primary Gi for over 10 years prior to us moving .
Current primary Gi we haven’t decided yet
No infusions
National testing lab corp /quest
We did switch rheumatologist to just one by future college

 

[momsa]

Thank you so much for your responses and for sharing your experiences. It's so nice to not go this alone. It seems like we are on the right track with having chosen Option Care. Thanks for the suggestion about Labcorps.

A couple of followup questions:
1) crohnsinct, You said, "with Covid they lifted the Telehealth "different state" restrictions and most providers can see their patients even in different states." I was told that these restrictions have already been put back in place. Have you been told differently?

2) Even with Optioncare, don't you still need a supervising doc in whatever state they are living in at the moment? And if so, how do you arrange that?

I also have one kid who is doing better with this than the other. They are "identical" twins.

 

[crohnsinct]

1) Not sure about the reinstatement of these restrictions but there was a big push to have state licensure shared across state lines and I read that 80% of physicians meet the requirements so maybe our GI and our daughters happen to be in three of those states.I would double check with your home GI.
2) you just need a prescribing physician. If in the state you live in, that would be your home state as that is your twins' legal residence. ALL legal documents, insurance etc use our address for my girls. Their school addresses just happen to be their "location". We have even arranged an infusion while on vacation in yet a fourth state. We just had the drugs delivered to the AirBNB after we got there arranged throughOption Care to have a nurse come do the infusion while we were there.

BTW - Option Care visiting nurses and infusion centers will draw labs as well. Saves you a trip to Labcorp. However, they will not handle Fecal Calprotectin samples. My girls get fecal cal tests at every infusion so it doesn't pay for us to get labs draw by Option Care but it is a nice option the one time we needed it because my daughter couldn't get to Labcorp before it closed.

I will say, it was our intention to find a GI close to school for the just in case scenario but not for regular visits. However, for our one daughter that was impossible and the worst happened. But in general when sick with Crohn's there is time to get home, even if it means a two hour trip to the nearest airport and a cross country flight. And if there isn't time, then the local hospitals are pretty good at handling your situation and in my daughter's case will transport you to another hospital if they are over their heads.

 

[Maya142]

Sorry I'm late to respond - my daughter has just had COVID. My kiddos are (mostly ) grown up now - one in grad school and the other has just finished college. They both went to school in cities that were close to our home, so they stuck with their old docs. Both were 1-2 hours from home. My younger daughter, who has both Crohn's and severe inflammatory arthritis and a number of other complex conditions, actually did miss a lot of school traveling to her appointments because she has SO many specialists so I do kind of wish we had found specialists where she went to school but it would have meant finding like 12 new doctors, which was daunting. COVID and online classes and online appts. actually made things easier for her in that respect - she never missed class and never missed appointments (though she did really miss being on campus, particularly since it was her senior year).

But if your kids just see a GI, then perhaps it's best to have one near school or where they spend most of the year? Schedule scopes right after finals? Not pleasant, I know - they want a break after finals but perhaps getting tests done and then coming home would work. Or alternatively, going a few days before school started to do scopes. It is possible to have multiple GIs but we've found with multiple specialists, communication can be hard, though it does depend on the doctors obviously.

We have also done home infusions - they are super convenient, but my daughter always came home for them and never had them in dorms. We used the home care company associated with the hospital her GI/rheumatologist are at.

We have also been told (on the east coast) that telehealth visits will be ending shortly for out of state residents but then my daughter ended up having an in-person appt. changed to a telehealth appt. because of COVID cases surging just recently, so I don't know if that is on hold or what the deal is. I will say that some of her specialists only do in-person appts. now while others still do both telehealth and in-person - even within the same hospital. It makes no sense to me.

In terms of labs, we always did them at LabCorp. At my daughters' schools, the school health center would not do labs that were not ordered by their staff. So even when my daughter needed weekly blood work because she was on Imuran (and it was just a CBC!), she had to go to LabCorp. So if you can do home infusions and have labs done right then, that might make things easier.

My daughter also loves home infusions - like @crohnsinct's daughters, she says she will never go to a hospital or infusion center again! The med is shipped to us, as are the supplies and a nurse comes home to do it and my daughter could study or nap or watch TV on the couch.

 

[Jmrogers4]

Son goes away to school, he has had home infusions starting in the dorms his freshman year and then his apartment, he sees his GI here in town either on breaks or through telehealth. We go through optioncare and he has easily switched infusions from school home to home home if he is going to be here at the time of an infusion. Just calls to let them know. Laps are drawn by home health nurse and run at his local hospital. Just had a telehealth appt the beginning of the month and will see his GI this summer for an in person and scopes. He has been out there for 5 years and does not have a GI there but he is about 4 hours from home so might be different if he was much farther away.