Jaime Christmas shares how her caregiving experience shaped her work in amyloidosis advocacy, highlighting ongoing gaps in awareness, diagnosis, and access to care. Read Christmas’ column Sunrise Sunset.
Transcript
Well, I’m Jaime Christmas, and I am based in New Zealand. I head the association called New Zealand Amyloidosis Patient Association, and the association came into being from my late husband.
I got involved because when he was diagnosed back in 2013, we just didn’t have any support in the country. Not many clinicians, at least in New Zealand, understood what amyloidosis was about.
So when he was diagnosed, basically we had to figure things out on our own. He has family members overseas that has been diagnosed with the same condition. So in that sense, we were better off from a lot of people that were diagnosed in New Zealand that didn’t have anywhere to go to.
So we tapped onto the shoulders from the UK side, his family, and the clinicians over there to sort of understand more about the next steps once you’ve been diagnosed. But it doesn’t change the fact that because we live in New Zealand, we didn’t didn’t have a lot of information or medication, for that matter.
So the association came to be because we found that we had to put New Zealand on the map. As far as pharmaceutical companies were concerned, because at that point there was no treatment, there was no targeted treatment in the country. Everything was symptomatically treated, at least by the clinicians that didn’t have an understanding of amyloidosis.
But most of the time we had to go into a clinic explaining his condition to the practitioner in front of us.
Advocacy matters to me because that is the only way that you can get your voice out there. Your voice as a caregiver and, more importantly, the voice of the patient. Because until somebody steps up and puts your hand up and say, “Look, this is the situation, we need help.” I don’t think you’ll be able to, to provide anything not for yourself nor for the patient.
So I think advocacy comes in both forms. You’re trying to advocate in the community because there are people out there that are facing the same situation as you. But apart from that, the advocacy also has to happen within the medical field because unless the GPs, for example, the general practitioners, the doctors, they are the first point of contact that the patient sees.
So in order for correct treatment and correct diagnosis, more importantly, to happen, the grassroot doctors need to know about the conditions so that when a patient comes into their clinic at the back of their mind, they know, “Oh, is this amyloidosis?” That is going to make such a huge difference in terms of diagnosis because rare condition, one of the biggest challenge is diagnosis.
So what prompted me to continue being an advocate? Look, Aubrey passed away in May of 2022, and there was a time when I had to think to myself, “Do I still have a voice?” But I’ve come to the conclusion that experience still matters. There’s still things that I can talk about.
Particularly for rare conditions, I find that your experience as a caregiver, or patient for that matter, is so nuanced that because of my work, which is still in advocacy with the association, I need to get the word out there about the challenges that advocates that work within the rare disease space face the challenge trying to get the word out there within the community.
Your challenge to trying to get out there to the industry, pharmaceutical companies that are involved in trying to get treatment for that particular rare condition, you have to kind of find your way to be able to get the attention.