Change in the Air: We’re Mulling Becoming Medical Refugees

Every so often, my husband, Aubrey, and I go through this exercise where we evaluate our circumstances in life and decide if we should shake things up a bit. Since the pandemic‘s start, we both have been challenged, not only by its hampering our movement and autonomy, but also by its disrupting his needed clinical care.

The pandemic has stretched the medical system here in New Zealand, where we live. I’m sure this is not unique to us, as other countries also face a shortage of doctors and nurses who can support the growing number of people needing hospital care.

My husband is 58 years old this year, and since 2013, he’s been battling hereditary ATTR amyloidosis. This disease that killed his grandmother, aunties, uncles, father, and siblings now wreaks havoc on his own body. His declining health, compounded by a lack of proper therapeutic support, is affecting him significantly.

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Considering that we will be in this situation for quite some time still, it was beneficial for us to take stock of where we are and make some decisions on how to move forward. Living through a pandemic has taught us that we must be willing to let go of what we have and embrace change to move forward.

Of course, at the forefront of every decision we make is the condition of Aubrey’s health. We have had to ask if we should seek a better healthcare plan overseas. This would entail leaving our comforts and home here in New Zealand to begin again in another country where at least his disease can be better managed and a proper treatment plan could be provided.

There is a name for people like us who have an illness for which care and treatment are not available in our own country, so we have to move abroad. We become medical refugees.

For people with a rare illness like my husband, the pandemic has had a destructive impact. Any preexisting weakness within the health system has been exposed and exacerbated. New Zealand ranks last for modern medicine access among other countries in the Organization for Economic Co-operation and Development. The complexities of the healthcare system have caused many locals to move overseas and become medical refugees to have a chance at living.

This is the ugly truth of an otherwise wonderful country, but rather than fault the system, my husband and I choose to look at other opportunities elsewhere to support him in living longer and better. At the moment, we are still evaluating a move back to Australia.

No country is perfect at suiting everyone’s general needs, but when facing a life-or-death situation, the options become more evident. New Zealand simply does not have the capability of upholding people with rare illnesses.

As a wife and caregiver, I support my husband’s needs. As a patient leader advocate, I support the need for New Zealand to change and incorporate a rare disease framework into its healthcare policies.

Archbishop Desmond Tutu said, “Hope is being able to see that there is light despite all of the darkness.”

This is true for us. Despite the trials we face, if we are open for change, there will always be an opportunity to come out of it well.

Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.