The Dialogues – Episode 8

Follow our lovely talk with Renza, diabetes advocate, and activist, who is promoting a person-centered approach to healthcare. As a Program Manager for Type 1 Diabetes and Communities at Diabetes Australia, our discussion will revolve around mental health and the stigma associated with diabetes. Find out more about how media behavior with diabetes is affecting one’s perception and find out more about the public campaigns that are currently trying to change that direction.

Watch the entire video:

Hi Renza,  welcome to the dialogues. 

Hi Pete,  Thank you so much for inviting me to have a chat. 

I am really excited to talk to you today. Thanks a lot for joining us. Let’s start with your brief introduction. Please introduce yourself to our listeners and share with us your diabetes journey.

 Well, I was diagnosed with type one diabetes in April 1998 when I was 22 and a half years old and my diabetes management these days looks very different then 22 years ago. I’m using a DIY loop system now for the last three years and honestly in the last three years, diabetes has been the least burdensome for me than ever before. 

The looping has taken away so much of what I have to do on a daily basis in terms of diabetes management, it’s much smarter than me. Basically, it would be correct to say that its algorithm is way smarter than I could ever think of.

I have recently realized that our (type 1 diabetics) brains are essentially trying to do the job of our pancreas. What’s your opinion on this?

 Exactly, pancreas has lots of jobs, but its main function is that it focuses on keeping your glucose levels stable. So diabetes is absolutely the most important thing in my life and now I can park a lot of the stuff that I have to do. 

That’s really interesting. It interests me because I’m in the community now, and one of my bugbears is to seeing people in the community who feel sorry for themselves because of the sufferings and complications happening to them. But there’s also an opportunity for some people to try to adjust their perspectives a bit. Your perspective sounds like you’re well adjusted with it. How well do you tend to process diabetes and the role that it plays in your life? 

I know several people who are doing truly remarkable things despite being diabatic like they are climbing Everest and running Marathon etc. and they are truly amazing.  But equally, I think that there comes a point where you get really consumed by diabetes being a real struggle for you and there are a million reasons why that might be the case. I would say it is good to seek help if it happens. Also, we do need to acknowledge this privilege that we are very happily living in Australia whereas there are people who are wondering where their next vial of insulin is going to come from. So I think that it makes it easier sometimes to feel that we can overcome it because we have access to health care when needed and we can afford those tools that make life with diabetes easier. 

I want to understand more about the broader global context, because I know you’ve got a perspective on that? And how did you acquire it?

I work at Diabetes Australia, where I am the manager of type one diabetes and the communities. I’ve been doing it for just over four years, but before that, I was at Diabetes Victoria for 14 years where I developed and ran a program that was about community engagement. So in that program, which is still running at Diabetes Victoria, there are things like kids caps, a lot of resource development, a lot of peer support stuff etc. so through that, I developed a grasp of what’s going on in the diabetes community. Fortunately, there are a couple of things that helped me to get to the point like I have worked, for a longer time, with the CEO of Diabetes Australia, who used to be the CEO of Diabetes Victoria and he always had this perspective of what we cant understand within our boundaries and what else is out there.

I was also very interested in reading stories especially to hear from people living with diabetes and then I started my own blog from where I found this global diabetes community that was just remarkable. Because of that, now I have friends literally all over the world who are living with diabetes and who provided me with the insight regarding the challenges diabetics are facing across the world that are specific to their countries. 

About the last few years, as part of my job,  I was kind of associated with a very big community of diabetes advocates who come together at diabetes conferences, making sure that what previously used to be only accessible or available to health professionals should now be accessible to people living with diabetes, not necessarily meaning that every single person could get a registration badge and walk into any diabetes conference but it means that a significant number of us have virtually attended and were able to communicate in the language that works for us so it’s not necessarily highly technical like what does that mean to people who are actually living with diabetes. That’s been a big part of my job so this has been really interesting for me. I usually spend a week each month in different parts of the world attending conferences or hosting events so that’s that’s why I have a global perspective of what’s going on. 

What are the purposes of Diabetes Victoria and Diabetes Australia? Are they the same organization for all intensive purposes? Or they’re completely different in terms of where they get their funding from and how they go about their business. 

We have a Federated model, and, if you go into the Diabetes Australia website, it is very clearly explained. Basically, Diabetes Australia is the national body and the state bodies are the ones that actually have members who are people with diabetes. So if you’re a member of the diabetes organization, it is your local, or state based organization, not of Diabetes Australia nationally. So my role at Diabetes Australia is far more toward national policy making. Each of the different state bodies have their own board and the National body has very aligned processes. We work to support people living with diabetes. 

How and where does the money come from? 

The administrators of the NDSS do it and the states have other funding channels as well, so that’s different in each state and again, they very clearly declare that. It’s public money and private money. The states also have their membership fees that they collect from people like us living with diabetes. 

How do we know if the money is being spent well and effectively? 

Well, absolutely, that’s a good question.I mean, everything is pretty transparent. They provide their annual reports and they are available on their website so you can see how much money is coming in and how and where the money is going. So it includes things like, you know, whom we are partnering with and what does that partnership look like? This isn’t just about diabetes, this is a health organization. The heart foundation, kidney foundation and all of us apparently maintain transparency so that nothing can be hidden from the general public. One more thing to consider is that this is not only related to health organizations,  It’s also related to advocates 

I think that If someone’s job is to go and enhance the lives of diabetics in Australia and if he doesn’t have a relationship with companies that are providing the things that work to enhance the lives of diabetics then he is not really doing his job. Right?

Yeah,I’ve always felt that the diabetes world is made up of different key players. It comprises of, obviously, people with diabetes who are right at the center, health professionals that we work with, industries or companies, government because regulation and funding comes from them so the diabetes organizations often act as a connector for all these groups and it always makes sense to me that we should all coordinate together to be on the same page. 

I know that I am frequently unpopular about that view with people within the community who think that it should be a very clean and separate divide, but equally I’m often very unpopular with the groups that I am working with because they know that they’re not going to get a dishonest comment from me. I’m pretty abrupt in that part. This reminds me of an incident when I was sitting in an advisory board meeting last year, It was the first time I’ve been invited to a medicine company, and I was very happy to be there because this was something that was pretty exciting for me. Their first presentation slide (cover slide) had a page from my blog where I had torn their strips off, but they’re advertising it at a diabetes conference. I was absolutely horrified with what I saw when I walked into this conference. I thought they brought me here to sacrifice me but, you know, it wasn’t there, it was very much okay, so we stuffed up there and we came to know how to not do it again. 

So that’s a good example of where relationships with industries are helpful. Right? And if you don’t have that,  one industry doesn’t exist, then what do we have? Let’s be grateful for what industry brings to us and how they help us improve our lives. if they’re doing that and we don’t have a relationship with them, then we can’t help them do better. 

So yeah, there are a number of people who are in groups within device companies. I’m not involved in any of these, mostly because no devices were actually built here, but they are part of that process like how this device works for them and how does it feel? This is something that people with diabetes are gonna be really excited about. I would much prefer the design and development as all of that stage is absolutely loaded with diabetics. So, you know, I think that this is necessary, 

My words are my own and no one has read these before I published them. Let me tell you, no company wants my words. They really don’t want to own them, they don’t want to review them. Everyone has thoughts,personal opinions and biases too. 

Having biases is a normal thing, as it is inherent. Everyone has their personal opinions and views.

Yeah absolutely, what I say depends on my experiences, thoughts and opinions, I would read as many comments from people with diabetes who are using it to see what they say, because that’s how you actually get a good idea of how something works in the real world that is not present on the shiny brochure of that device.

I agree with what you said and I wanted to jump on to the global picture of diabetes and understand your perspective on that. But before that please tell us what are the priorities of Diabetes Australia at the moment and what is happening right now?

All health organizations work on evidences and they prefer and apply evidence based approach.. We absolutely have to be like this. Though it does not mean that anything that doesn’t have that evidence should be ignored.  Let me explain it through an example, because I think this actually gives you the idea of what our priorities are. Two years ago, Diabetes Australia launched a position statement on DIY technology that is “Do It Yourself” technology and we were the first diabetes organization to do this around the world which is something that I feel enormous pride when it comes to being upfront in healthcare. Essentially we’re not endorsing this but what we are saying is that if a person with diabetes wants to do this then they need to be supported in their diabetes care, so that comes down to the food, the diet, the technology, the way we choose to see health care, whether or not we choose to access it, so the people with diabetes need to be supported. This is where Diabetes Australia is upto. 

What’s the priority for Diabetes Australia Right now? Which of things and actions are the concern of your investments?

Yeah, so we’ve spent a lot of time on mental health and raising awareness like, what does that mean etc. In addition, we do campaigns like the national diabetes campaign and others  in different ways, so sometimes they’re very much targeted to the communities with the purpose of  raising the awareness in the general community about diabetes and also about their mental health and including the topics like how and when to seek help. 

Last week we ran a campaign called “Get Your Socks Off”. We worked with different MPs to let them know the numbers of people with diabetes in their local area and the importance is specifically around their timely screening and their foot care. One more campaign we did was “Keep sight.” That was basically a recall-reminder campaign so that people remember when they need to go and have an eye check. I always feel like you hear a lot of people say that diabetes is like having a second job and I’ve always said it sometimes we badly need a PA who could do your admin stuff like booking the  appointments, reminder etc. Fortunately,  Keep Sight has made this job really easy because it takes two minutes to register and then you will actually get a reminder when it’s time to get yourself checked and for follow up appointments too. So I guess it does come down to a lot of different things where we’re trying to lessen that burden for individuals like  reminding them regarding their checkups and helping them understand how to access mental health care if they need it. Besides that, we also closely work with the government like how do we put in place those structures that can be effective for our patients.

I imagine that there’s a competition for resources, right? So there’s finite health dollars (limited budget) in the country, whereas there is no shortage of other health factors like breast cancer, mental health issues etc. and everyone is scrambling to be heard and to get their piece of the pie so I guess that’s part of what you’re doing as well, right. You are advocating and you’re fighting for money to promote diabetes to help diabetes patients, 

Definitely, So let’s talk about how hard it is to advocate for diabetes when you are in a space where there are things like breast cancer, childhood cancers and other diseases. Let me clarify here that I have no right to say that anyone is more worthy or that diabetes is more worthy than other health issues but what I will say is that there are numerous stigmas associated with diabetes because people, till today,  think that you brought it yourself and they should get up and go for a walk and you make this happen yourself unlike women who get breast cancer. Now, the thing that’s really interesting is that we know there are different types of diabetes, so that blame and stigma is far more associated and connected with diabetes like type two diabetes. The thing is that when you look at type two diabetes, there are modifiable and non modifiable risk factors. Once that people have got the grip on those modifiable ones like maintaining a healthy weight,  eating fresher foods, making sure that you’re not sedentary and all of these things can help control type two diabetes. Now, you would never hear of a woman with breast cancer, so Why is it OK to do that to people with diabetes? Diabetes has got an image problem, and that’s what Diabetes Australia is working on. 

That’s really good. I think that’s important, actually. I think I was one of those people that probably had that attitude towards Type two and I used to distance myself from them because it’s more of a lifestyle condition and I think that that’s a really great way to put it like the modifiable versus non modifiable. We probably could say that type ones have less modifiable factors than type two, but it doesn’t change the fact that there’s actually a lot more non-modifiable elements to type two as well.  You can have two people identically eating the same amount of food or having the same lifestyle but one has got type two but the other one has not so that’s growing and there’s a massive amount of genetic component as well.  Even, I feel bad that I had an attitude that was wrong and I believe that it’s great to start to correct that. 

Yeah, there are a couple of points that are really interesting. I mean, that same thing that you just said about those two people who eat the same and weigh the same, but one will get type two but other didn’t. We know, of course, that there are certain things that we can do to reduce that risk. There are modifiable and non modifiable factors even in people with type one, though there may not be that modifiable factor when it comes to actually getting type one, but actually they might be considered when it comes to getting complications, but again, no one, regardless of what type of diabetes they have, If they are diagnosed with the diabetes related complications, they shouldn’t be blamed for it. Because all this leads to people getting underground and not seeking care, not talking about it, not knowing where to go, because they’re too afraid to ask and not hearing stories about people. As we know that hearing stories from others who are living with the same condition makes us feel less isolated. 

So it makes it harder to advocate and to go and fight because that’s where we started, to fight for the cause to get the funding and the support that we need. 

Exactly, when you ask about priorities of diabetes Australia, one of them is to have people understand that all types of diabetes are really complex and blaming people is not the way out. We’ve done that in a number of different ways and one of the ways I guess what I’m probably most proud of is that I talk about this in our language position statement that we did nine years ago when we put out a statement that was about the words that we are using while communicating about diabetes, They directly affect individuals because if I’m sitting there with a health professional who keeps on stigmatizing and using judgmental language then what are the chances that you will really go to them again? Very low definitely. 

Also more broadly, the way the media portrays diabetes and diabetes is  really dehumanizing in a lot of ways. like the images that they use, their headlines etc. They usually show  people who are overweight, sitting and eating a hamburger. So ‘Language matters’ is now a global movement that was started in our offices here in Australia, and it’s interesting because people have this perception that it does not matter as long as they are getting the right care, However, in reality it does matter because it means people feel shame, feel guilty, they don’t seek medical care. 

Indeed, This is my own opinion that, given the impact that diabetes has on the health dollar from a long-term perspective, that if you can start to rectify and start the things right early with a preventive purpose, this will pose long-term benefits to the health system. This is going to be significant for Type ones and type twos. I also think that this will surely be a great argument for the government. Like you will have more money left over for later to spend on other things. 

yeah, I feel that this can be a major source of empowering the community and emphasizing over the prevention of the disease, that can further prevent massive complications.

I think this could be like the US system. It is an example of the inefficiencies and the outcomes. They spend more than anyone but not getting the desired outcomes. More precisely, we can say that the US based system is short sighted because it’s all profit driven. There are some Northern European systems that use less capitalistic approach and do have more of a sense of like “let’s invest in health care and let’s get it right.” For instance in Sweden or one of the Scandinavian countries that have 80% diabetics on CGM that no other country in the world might have. And that’s because of the government’s investment. So that’s nice to see examples of such types of systems existing in this globe and let’s hope that we learn from it. 

I totally agree, there are systems that we can look and learn from.I think we’re so lucky in Australia in so many ways, and we are the envy of a lot of places around the world because of the way we work and the choices that we have. Indeed, we have a great public system that is underfunded, but you know, the diabetes caring public system generally is fabulous, We also have such a system that people can easily access. Then comes the hospital care, we have got the facility of health insurance.  So we have choices and I think that choice is really critical. 

The multidisciplinary form of care is amazing. It’s absolutely the envy of the world and it costs me nothing. Obviously I pay taxes so that’s actually a really interesting point again. It’s just that it doesn’t cost us anything there. Everything is taxpayer funded, so everything has a value on it. It is a common perception that when something is provided for free, we don’t value them but it is important to note that everything has equal value attached to it. Though, I know people who have had crappy experiences too but at large  we really are very fortunate here. 

I would really like to jump to the global perspective of diabetes including the percentage of people in the world that have access to decent healthcare services, raising awareness and getting people, in first world countries, to realize how lucky we are to have high-quality care and how many people don’t have it and what does that mean. I think that there are many different directions we can go in but we’re running out of time for today. If you’re happy we can do this again at some other time and it would be great to have you again.

I would love to be part of this again. I will definitely come and speak on these topics. 

It was so good to chat with you. Is there anything that you want to cover or any message or any comment you wanna leave for our listeners today, 

I would say that we’ve been talking a lot about the importance of being connected with people’s stories and I would really encourage everyone to have a look at the global diabetes perspective. You can get it from many sources like Twitter, Facebook, Reddit or anywhere as it’s so easily available. If you google “Diabetes Online Community,” I promise that you will be launched into a huge, massive platform and it might take me time to find your corner of it. But honestly, I always say that my peers with diabetes are just as important to me as every other part of my diabetes management. 

Thank you so much for your time. I look forward to chatting with you again. Have an awesome day and have a great weekend,  I’ll speak to you soon. 

Sounds great. Thank you. Take care