For our Awareness Spotlight, this month we spoke with Carolyn Dews, CEO of Immune Deficiency Foundation Australia. Envisioning a future where immune deficiencies are diagnosed and treated early, the foundation raises awareness to help improve understanding and health outcomes for those living with immune deficiencies.
Tell us about your role and how you came to work at the Immune Deficiency Foundation.
My role as CEO of the Immune Deficiency Foundation, which is a national membership-based organisation, involves rolling out our strategic plan and strategic priorities around education, awareness and advocacy. I’ve been in this role for over two years. I started just at the beginning of Covid, which was challenging.
I came to work in this role because I’ve worked in a range of leadership positions in the not-for-profit sector over quite a few years. One of my main interests is around public health and improving quality of life and health outcomes for certain population groups. So, working with people with immune deficiency was something that was appealing to me.
What are the mission and the vision of the Immune Deficiency Foundation?
The vision is a future where primary and secondary immune deficiencies are diagnosed and treated early, with effective people supported by clinicians, the community and the government to enable optimal quality of life.
Our mission here is to raise awareness of both primary and secondary immune deficiency, supporting and advocating to improve health outcomes for patients, carers and their families.
Why is it important to shine a light on the foundation and immune deficiency?
We have more than 2500 members who are affected by immune deficiency, and there are many more people in Australia who are also affected by immune deficiency or who are, in fact, compromised. These people face a range of health challenges throughout their life, including needing lifelong treatment, high medical bills, and other challenges around work and family.
We also need to shine the light on the immune deficiencies because many of them can be treated effectively if they’re picked up at birth. We feel it’s important to ensure that health professionals understand immune deficiencies, so if they’re working with patients, they can look for the signs and symptoms of immune deficiency to allow the diagnosis, which allows people to have access to treatment and improved quality of life.
Can you tell us about primary and secondary immune deficiency and the difference between them?
A primary immune deficiency is one of the range of conditions, and we believe that there are about 400 immune deficiencies. People are either born with an immune deficiency or acquire deficiency throughout their life – as opposed to a secondary immune deficiency, which is something that develops as a result of another treatment. So, for example, people who may be receiving cancer treatment may develop a secondary immune deficiency.
The foundation’s website states that members are supported through education, awareness and advocacy. Can you tell us about some of the ways you do this?
With education in recent years, we’ve been running regular online webinars around a range of topics that are relevant to our members – things like diagnosis of immune deficiency, effective treatment of immune deficiency, and then a whole lot of lifestyle factors that people can improve to ensure they have a quality of life. Things like fatigue, sleep, nutrition, healthy living and looking after mental health are all important areas of education.
We also provide support groups, so we have online support groups. This provides education to our members and also support. And we’re also just in the process of developing a peer support mentoring program that will allow some of our existing members to work with new members, to provide them with support.
The awareness-raising activities we do include sending out information to members as they join up. We also educate health professionals and the general community through online, website, social media and resources. We also work with the government to make sure that they’re aware of what immune deficiencies are and how they can assist people with those conditions.
Our advocacy activities include looking at topics that are important to our members and then advocating general government to commit to change around those activities. So, at the moment, we’ve been working on a newborn screening initiative to encourage the government to fund a screening for severe combined immune deficiency, which is a condition that can affect babies. And if that condition is picked up through a screening test at birth, then the baby can be effectively treated.
The foundation shares stories about people living with immune deficiencies and their family members. Do you think this along with listening to those with lived experience is important? Why?
I do think it’s important, and what we’ve found is that when we do share those stories, either via our website or social media, as part of our campaigns or in meetings with the government, it helps to have a member to tell the story about their experience and allows the person to hear that story, and to understand what it’s like to live with that condition, what the health impacts are, what the lifestyle impacts are, what the costs are, and generally how someone else lives. Those members’ stories are incredibly powerful, particularly in our advocacy campaigns.
Are there any initiatives or policies you would like to see implemented to help further research or assist those living with immune deficiency?
Some of the things that we’d like to see implemented, as I said, are newborn screening tests as standard. Older members are treated with blood products, specifically immunoglobulin, so we’d love to make sure that there’s equitable access to immunoglobulin and that it doesn’t have a cost to our members. And that, regardless of where they live, they can access treatment, either at their hospital or, if they choose, to have a product to treat themselves at home.
Also, we’d like to see some support for our members where they’re unable to work. Sometimes members can’t work because they’re unwell. So they then try and access the NDIS or other support schemes, and I think there needs to be some consistency around that.
Also, just recognition of immune deficiency and other rare diseases. Probably more education in the community because a lot of people don’t understand what immune deficiencies are.
How can retail pharmacy assistants best support their customers living with immune deficiency or an autoimmune disease?
I think just by being aware of what those conditions are and having access to information. We can provide resources and information, and, being a referral agency, can direct people to organisations like ours that can provide support for these people.
How can retail pharmacy assistants learn more or support the Immune Deficiency Foundation?
Retail pharmacy assistants can learn more by looking at our resources via our website. In terms of supporting our organisation, [they can do this] by referring people with an immune deficiency to us for assistance and to join up as a member – our membership is free. We’re a not-for-profit whose aim is to provide education, awareness and advocacy to members, so the more members we have, the more people we’re able to help.
This article was originally published in the May issue of Retail Pharmacy Assistants e-magazine.
