As advocates for the rare disease atypical haemolytic uraemic syndrome (atypical HUS), there’s only one group of patients and caregivers whose outreach spans more than 30 nations – the aHUS Alliance. As an ‘at will’ group of national advocacy and emerging aHUS advocacy groups in more than 30 countries, some incorporated with their own constitution and by-laws, the aHUS Alliance offers the opportunity for joint efforts that affect anyone living with (or treating) this rare condition.
The aHUS Alliance Global Action team was formed in 2016 as a non-profit organization to support the efforts and goals of the aHUS Alliance, providing governance and a legally recognized international aHUS advocacy group. As atypical HUS patients and family caregivers ourselves, our aHUS Alliance Global Action team is a group of international volunteers who can provide authentic patient voices through our personal experiences and our relationships with researchers and medical personnel who treat aHUS patients.
We are pleased to announce that Kerri Grey (AU) has been unanimously elected as a new Trustee of aHUS Alliance Global Action, a legally registered incorporated charity No. 1167904 in England and Wales. As noted within their overview from the Charity Commission regarding our focus, “Its operational activities objectives are to promote global awareness of aHUS,work with International aHUS researchers and support newly emerging national aHUS patient groups by connecting, informing and collaborating with interested groups.”
We’re fortunate to have Kerri Grey as a new Trustee on the aHUS Alliance Global Action team, which is in addition to the experience and insights she has brought to the aHUS Global Community Advisory Board (aHUS CAB). Kerri brings a wealth of experience in aHUS advocacy, as you can see from our interview below.
As a family caregiver for a son living with atypical HUS, it’s understandable why you’ve become involved in aHUS advocacy. Can you share a bit about your experiences, and how it’s led to international aHUS advocacy?
My son Ashley, became unwell in January of 2009. He was initially diagnosed with HUS but after a period of time whereby the disease activity did not go away and a kidney biopsy was performed the diagnosis was changed to aHUS. At that time it was so difficult to find others with the same disease as it is so rare. I eventually did find a small international community of aHUS patients and care givers with whom i was able to share my experience with and ask questions and finally feel supported. Some of these patients were just starting to use this experimental drug called Eculizumab and all of them seemed to be having such great results. Ashley was granted compassionate access to Eculizumab in January of 2010 as he was so unwell, his chances of survival without it were so low. It made an immediate difference and after spending 16 months in hospital and 3 months on Eculizumab, Ashley was finally able to spend more time at home than in hospital. I then created the aHUS Patient Support Group Australia (aPSGA) where I served as president, working with a small group of patients and carers, medical professionals, policy makers and pharma to advocate for Eculizumab to funded in Australia. We finally successful and Eculizumab became funded for use in Australia in December 2014.
What’s currently the situation of aHUS issues and advocacy in Australia?
Currently eculizumab is funded by the government in Australia as an approved drug to treat aHUS. This is fantastic because it means people who become unwell can get immediate access to treatment, which stops them from sustaining long term kidney damage and its associated side effects. Before people had access to eculizumab they would get extremely sick and be on lifelong dialysis or in the worst cases they would die. Now with eculizumab, as long as diagnosis is quick most people get treatment and return to their normal daily activities within a few weeks. Eculizumab is given as an IV infusion every 2 weeks which can have a considerable impact on a patient’s work or school life as well as an array of disease burdens and overall quality of life.
We are currently waiting for Australian policy and decision makers to review the drug ravulizumab at their meeting in March. Ravulizumab would be of great benefit to patients in Australia as it works in a similar way as eculizumab however, the IV infusions are only every 8 weeks which creates many benefits to a patient’s quality of life, less disruptions to their work or school, economic benefits and general lifestyle and family benefits.
By working with others on the aHUS Alliance Global Action team with broad issues that affect patients and their families around the world, we can unite over common goals to benefit aHUS patients everywhere.
In addition to being a family caregiver and with other children at home, you’ve pursued medical training to become a Registered Nurse. How does the ‘Mom/Caregiver’ role mesh with your RN experiences and training?
I started my nursing degree when I first finished high school but never completed it. After Ashely was born but before he became unwell I applied to University to go back and finish it. I found out I got accepted into the degree program 10 days after my son became unwell, so I chose to accomplish this on a part time basis. Ashley was in hospital for 16 months when first diagnosed so when he slept, I studied to become a Registered Nurse (RN). I would find a quiet family room somewhere to study and when Ashley would wake up the nurses would come and get me. After 7 years, I eventually completed my degree in 2015.
There are benefits to being a nurse when it comes to having a child with an illness, such as the understanding of how the body works and the medical terminology that is used. I have actually found that when it comes to Ashley and his health however, the perspective I have as a nurse looking after other people is totally gone. When it comes to my own child, I still worry about every little thing in an overly paranoid way. Perhaps because I understand what certain issues and findings could mean more so than other parents without a medical background, my professional knowledge can actually make my anxiety worse.
What haven’t we asked? What would you like to relay to others in terms of your role as an aHUS global advocate, as a family caregiver, or aHUS advocacy concerns?
It has been 14 years since my son first became unwell. One of the biggest things I realized with having a severely unwell child for a long period of time is this – that it is not just the patient that is affected, as it affects the whole family and especially siblings of the sick child. When a child is so unwell, the other kids tend to be forgotten. I am extremely passionate about being able to help families in whole sense that is inclusive of the whole family. I am also very passionate about advocating for access to treatment for all people in all countries It is devastating to me that there is a treatment available that saves lives yet is not available to all patients around the world.
Being able to help others in their aHUS journey has been incredibly important to me as well as incredibly rewarding. I am extremely honored to be joining the aHUS Alliance and look forward to being able to advocate for and assist patients all over the world as I have done for patients in Australia.
Interested in learning more about aHUS advocacy or the efforts of our aHUS Alliance Global Action team?
Contact us: Info@aHUSallianceAction.org