At Uptiv Health, we understand that living with a chronic condition like Ulcerative Colitis shouldn’t limit your aspirations or ability to travel. Especially around the holidays, we wonder how many people compromise on traveling desire because of their condition’s challenges? Stories like Aaron’s, who didn’t let his infusion therapy get in the way of his dreams, inspire us. His journey exemplifies the resilience and determination we see in our patients every day, and we hope that some of Aaron’s lessons learned will be helpful for someone else’s journey.
Overcoming the Added Travel Challenge of Being a Patient Who Receives Infusions
Traveling over the holidays can make anyone anxious. Having Ulcerative Colitis for fifteen years has been a primary consideration in how I explore the world. To feel prepared, I pack an array of medical supplies for managing the disease’s debilitating symptoms, a portable bidet, and reconcile with the possibility that I may miss my plane due to being toilet-bound. Now, with new medications, elevated infusion centers, learning the lingo, and having access to the right resources, I understand what’s possible. I’m sharing my journey to help patients like me avoid the frustration of putting together the pieces and feeling unseen, hopeless, and disconnected from their potential.
Earlier this year, I had a wake-up call. I wanted to return to exploring and seeing the world, which turned into starting a business. Becoming my own boss allowed me to take a proactive approach that compartmentalized my health-related challenges and gave me some momentum. My first step was determining how to arrange infusion treatment in a new place every six weeks. I set out to create a repeatable, flexible, and documented way of making this easier on myself during travel. In my months of research, I found pieces of this puzzle and wonderful people who wanted to help me achieve my aspirations. Infusion centers like Uptiv Health strive to make the process more transparent, accessible, and comfortable.
How to Talk to Medical Organizations About Travel While Receiving Infusions
The challenge here is bridging the gaps between the language of doctors/infusion centers, insurance companies, and us, the patients.
I called my gastroenterologist, asked friends in the medical field, listened to the insurance-hotline-music, phoned the manufacturer of Entyvio (the drug I have infused), and eventually called the support network, Entyvio Connect. My question was simple, “How do I get this medication while traveling?” I discovered that its implications, including needing to know all the jargon and who to use it with, made coordinating all the pieces difficult.
My approach to this challenge was to start simple and seek energy from little accomplishments:
Identifying the Audience
Who is answering the hotline?
Identifying Informational Needs
What specific information about my condition or circumstances do they require?
How can I convey my problem to them in a manner that is clear, understandable, and likely to elicit a positive response?
Getting Them Excited About Your Story
Tell them, “I’m on a journey to follow my dreams, and today, you’re a part of it, and I’m grateful.” Remind them that they got into medicine to help people!
Staying Positive for Energy
Let the excitement of your new chapter give you some self-assurance. Let yourself get psyched up; the positivity will provide you with energy and resolve.
Streamlining Your Authorization
After iterating through the process a few times, I noticed a pattern in setting things up. I also discovered some flexibility in the process. For example, after changing infusion centers/authorizations a few times, my Entyvio authorization was changed from a prior authorization to a standing authorization. This change allowed my infusion centers to access the same authorization rather than needing repeated individual authorizations, which cut processing time in half.
Be Aware of Your Treatment Schedule
In addition, paying close attention to the timeframes of your infusions is very important. I once almost got an infusion a single day ahead of schedule. The office’s front desk person warned me this would require an out-of-pocket payment of $25,000. Dodging that nightmare filled me with gratitude, giving me more positive energy to share with everyone on my journey.
Nine Steps to Follow for Travel Success
The complexity of the healthcare system and infusions might seem discouraging, but I find it is possible to arrange infusions using the following simple steps:
1. Identify Infusion Centers
Based on reviews, location, and availability. Some medications have support websites for this process; mine does, for example: https://www.entyvio.com/traveling. Make sure to check for yours and other resources for finding infusion centers, such as the Infusion Access Foundation’s (IAF) Infusion Center Locator tool.
2. Confirm Coverage for Travel
Make sure the center takes your insurance/plan version, accepts out-of-state orders, and has new patient paperwork and order forms for your medication.
3. Send Your Medical Records
Send these to the new infusion center and file new patient paperwork.
4. Follow Up for Confirmation
Follow up to confirm that the new infusion office has received the records and office paperwork.
5. Cancel the Old Authorization if Warranted
If you have a prior authorization, as opposed to a standing authorization, call the previous infusion office to request cancellation of authorization and inquire about the transition timeframe.
6. Initiate the New Authorization
Call the new infusion center and ask them to proceed with getting a new authorization.
7. Verify the Cost
Verify the cost with the infusion center and insurance company, ensuring both organizations have the same information.
8. Schedule the Infusion Before Travel
Schedule your treatment with the new infusion center well in advance.
9. Finally, Show Up!
Attend the infusion appointment.
Please note that there may be variations in the process depending on the specific infusion center and location.
While these steps may seem daunting, getting through them is possible and becomes easier with practice. Additionally, finding more helpful and insightful infusion centers can be an invaluable resource on your travel journey. Moreover, connecting with a supportive infusion provider like Uptiv Health can also eliminate several of these steps for you because they will take care of verification, estimates and benefits, and will handle copay collection and onboarding paperwork digitally so that you can simply come in for the infusion. Most importantly, remember that your condition doesn’t have to limit you in exploring your travel options.
In Conclusion… Go Travel!
Aaron’s story is one of hope, persistence, and inspiration. At Uptiv Health, we’re committed to supporting our patients’ journeys, ensuring that treatment is an enabling part of their lives, not a limitation. Whether through our state-of-the-art infusion centers or empowering digital tools, we’re here to ensure that every patient can pursue their dreams, just like Aaron.
Aaron Dean (he/they), CEO and Founder of Deanalytics, is a distinguished leader in Data and AI Implementation. His professional path has been profoundly influenced by a 15-year journey with Ulcerative Colitis, inspiring the establishment of Deanalytics for greater autonomy over his health and career. Aaron’s tenacity and adaptability shape his tech industry approach and drive his mission to empower others with similar health challenges. A graduate with a BA from Bard College and an MBA from SUNY New Paltz, Aaron’s diverse interests in music, philanthropy, and professional paintball have led him on adventures across the globe.
About Uptiv Health
Uptiv Health is redefining infusion therapy for patients suffering from chronic conditions such as multiple sclerosis, Crohn’s disease, ulcerative colitis, rheumatoid arthritis, and others. Treating the whole person, Uptiv Health offers a hybrid experience with comfortable, highly personalized in-person care, including services to support patients’ overall well-being and a consumer-friendly digital platform. A user-friendly app allows patients to onboard without paperwork, consult with their care team, schedule appointments, check in, handle payments, and monitor their symptoms. Uptiv Health accepts Medicare, is in-network with many health insurance plans in Michigan, and provides completely transparent upfront pricing at a substantially lower cost than traditional hospital infusion treatment centers.