Living Abroad with CVID

I’m writing this article now because it was something that I needed one year ago and didn’t have.  I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency and to this day, I still don’t.  Unfortunately, we CVID patients don’t run into each other too often unless it’s at a support dinner or at the hospital.  Fortunately, however, we are lucky enough to have lovely sites like this one, which connect us all.

When I was first diagnosed with CVID in October 2017, the future I had built for myself suddenly disappeared.  I studied literature and languages in my undergraduate career, hoping that I would have the opportunity to live abroad and travel the world. How could I live abroad now? How could I get proper healthcare?  How would I be able to make it on my own in a different country, on a different continent?  It seemed my carefree life had come to an end.

In March 2018, 5 months after my diagnosis, I learned that my subcutaneous immunoglobulin (SCIG) treatment was available in the EU, with the pharmaceutical company’s main offices located in Ireland.  With that knowledge, I decided to apply for a graduate program at a university in Dublin.  I began to dream of a new future for myself when the acceptance letter arrived.  Being cautiously optimistic, I knew I couldn’t accept a place at the university without knowing first if I could get access to healthcare in Ireland.  Thus began the long and emotional process of figuring out how to move.

Step One: Find a doctor.  To look for a doctor, I used the Jeffrey Modell Foundation website (www.info4pi.org).  They have a great tool called “Find an Expert Immunologist” which allows patients to search for qualified immunologists by country. I found an immunologist in the city I was planning on moving to and, as luck would have it, his practice was associated with the university I was hoping to attend.

Step Two: Contact the doctor.  Thanks to the Foundation’s website, I was able to gather the immunologist’s contact information.  First, I emailed the doctor with questions about how to gain access to healthcare benefits or insurance in Ireland and what treatment options were available in his practice.  He forwarded my email to his nurses who were incredibly helpful.  They informed me that there was a four month wait time to make an appointment with the outpatient care center and that I would have to get a referral from my current doctor sent to them to start that process.

Step Three: Get a referral letter.  This step should have been the easiest.  I was already seeing an immunologist regularly in my city and thought that he would willingly agree.  He was less than helpful and would not send a referral letter.  My friend and fellow zebra referred me to her immunologist, who was willing to work with me and even had his nurses call the hospital in Ireland on my behalf.  I also requested all available medical records from my doctors and made sure to bring them with me to Ireland.

Step Four: Get international insurance.  In the States, I had health insurance through my father’s employer.  Thanks to my father’s previous interactions with the company’s health insurance provider, he was able to give me the contact information for a woman in the customer service department who was invaluable to my efforts.

Step Five: Have a back up plan.  My insurance agent and angel from Heaven did everything she could to come up with a Plan B, on the chance that I wouldn’t be able to get treatment in Ireland.  She called the US Embassy to see if they could accept shipments of medication from the States, she called the pharmaceutical company in the US to see if they could give me more than one dose at a time, she checked if I could travel with the medication in hand, etc.  We quickly figured out that the insurance company wouldn’t let me have more than one dose at a time because of the outrageous cost.  We also learned that travelling with the bottles of immunoglobulins would be less than ideal because of temperature changes on the plane and on the ground, not to mention issues with security and customs.  The US Embassy wouldn’t be able to accept my packages either.  All our back up plans fell through, and yet for some crazy reason, I still had a faint glimmer of hope that it would all work out.

Step Six: Take the leap.  Not everyone should take the leap.  I was foolish enough to do so and it all turned out (sort of) fine.  In August, I had my final infusion treatment in the US and left two days later for Ireland, hoping that the four weeks until my next infusion would be enough to find treatment in Ireland.

Step Seven: Call and call again.  After four weeks, I had no success getting into the outpatient facility.  Even though we had started the process four months earlier, the hospital was still too busy to see me.  I went to a private practice, thanks to my insurance, and was seen almost immediately. Despite my extensive documentation on my medical conditions, they wanted to do their own bloodwork, which would take four weeks to come back.  On the day of this appointment, I was already one day overdue for my infusion and knew that my health would decline rapidly without treatment.  This doctor was unwilling to treat me without his own bloodwork and, however unpleased I was with this decision, I knew he wasn’t wrong to do so.  In the meantime, I called the hospital several times and spoke with the nurses, imploring them to find space for me.  Two weeks later, they set up a consultation with the doctor.  I showed up coughing and wheezing, with a headache and a fever, but happier than ever to be in the hospital.  The next week, I was getting my infusion.

Step Eight: Be grateful.  Before my first infusion, I was already in classes, sick as a dog, afraid I would never get treatment again and would have to drop out of my postgraduate course.  I never thought I’d be happy to have needles in my abdomen and an expensive treatment flowing into my body, but that day I was the most grateful, teary-eyed version of myself.  Things are done differently here; I have to go to the hospital for my infusion, the setup is different, and the outpatient facility is definitely not what I expected.  Despite all these differences, I am grateful that I get my infusion in the outpatient facility in the hospital.  It gives me the opportunity to connect with other patients, have consultations with the doctors, and – this is the best part – I don’t have to put the needles in myself!  It may seem like a silly thing to be excited about, but anyone who has to get regular injections knows how difficult it is to stick a needle in your own body!  I am so grateful to be in a country where infusions are affordable, to be in a hospital where the nurses are so kind, and to be as healthy as I can be.

No two stories of moving abroad will be the same.  It may not be realistic for some.  I am lucky enough to be young and single.  I don’t have to support anyone other than myself and have few other limitations on my ability to travel.  My advice for anyone looking to move abroad is this: start early, be practical, and be grateful.  This experience has made me more grateful for the wonderful things I do get to enjoy.  I love my new home and count myself the luckiest girl in the world to be able to live here.  I hope you all get the opportunity to do the same.

About the Author: Jennifer is a recent Master’s graduate from Trinity College Dublin, where she studied graffiti in historical sites. Outside of her academic pursuits, she is an avid reader, equestrian, and traveler. In spite of her struggles with common variable immunodeficiency (CVID), she lives a happy life with the support of her friends and family


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