The Guts to Make a Change

Francesca Manglaviti is the CEO of an organisation that works to fight an invasive and life-altering disease – an organisation that also needs to fight public perception of the disease. Manglaviti is this week’s Changemaker. 

Crohn’s and Colitis Australia has been been making life more liveable for over 75,000 Australian men, women and children living with inflammatory bowel disease for more than 25 years.

The CEO of the organisation, Francesca Manglaviti, has been in charge for nine years and plans on making 2015 a year of reinvention.

She shared some of her plans for the future and some of her achievements of the past.

How long have you been working in the Not for Profit sector?

I’ve been in the Not for Profit sector for about 10 years.

I was the National Program Manager a for  a major children’s charity for a year and have now been at  Crohn’s & Colitis Australia for nine years

What did you do before joining the NFP sector?

My background is quite varied. I started life as a teacher, and moved in to the corporate sector    and worked in a number of areas including adult training and business development.  Then I moved to Sydney and worked for the Olympic Coordination Authority, and worked on the Sydney Olympics for about four years. That experience taught me a range of different skills; project management, stakeholder management, marketing and even PR. It was a very exciting time..

What was it that drew you to the Not for Profit sector?

I think the Not for Profit sector aligns with a lot of my values  I’ve always had a social conscience, I’ve always wanted to contribute to society in some way, even when I was a kid .

Working in the Not for Profit sector also allows me to use my business development skills, It allows me to be entrepreneurial, strategic and the scope to tackle the big questions, the big social issues.

You know that the work you do can have a definite impact on the people you serve. We’re lucky in this sector because we meet fantastic people all the time. We get to see the result of our work through the people we meet.

I understand it’s going to be a slightly different year for your organisation and that you’ve got some plans to shake things up a bit. Can you shed any light on that?

Over the last 12 months we’ve gone through a process of re-evaluation and worked on where we want to be as an organisation, how to remain relevant and sustainable, how we want to position ourselves and the messages we want to put out there about bowel disease.

One of the problems with Not for Profit management is maintaining sustainable funding. As a board, we looked at the issues and options and came up with a strategy to develop a social enterprise that is completely different to what currently exists and will also have a game-changing impact on the way people look at gut health.

To achieve this, we’ve had to restructure the organisation. We had to look at the skills that we have available and make sure that we have the right skills to take the organisation forward.

I guess one of the issues is that Crohn's disease might not be one of the illnesses that everyone thinks of. For lack of a better word, it’s not a “sexy” disease. How do you overcome that?

That is one of our biggest challenges and is one of the reasons  why we’re branching out into the social enterprise that we’re looking at.

We don’t intend to make bowel disease a sexy disease, but we do intend to normalise it and take the stigma out of it, allowing people to manage their gut health in a way that if their bowels do misbehave then it’s not such an embarrassing and difficult thing to go to the doctor and address it immediately.

One of the major challenges of this organisation is that it Crohn’s and colitis are  lower profile diseases. Bowel disease is a difficult thing to talk about because the symptoms can be embarrassing. This makes getting funding difficult, it makes creating awareness difficult and it makes engaging high profile advocates difficult as well.

But you’re determined that this year will be a very positive year though?

It’s going to be an absolutely positive year.

We’re working on a number of projects at the moment, the social enterprise being one of them. We’re also about to launch a campaign, the  #IntoTheOpen  campaign, which draws awareness to the symptoms of IBD which is the collective term for Crohn’s & colitis, and not only the physical symptoms but also the psychological impact of having an inflammatory bowel disease. The campaign will be launched on January 15 and will include a series of ads to be placed in public toilets, and a social media campaign that will run for three months.

We’re also conducting the first ever IBD audit in Australian hospitals. We recently received Government funding to develop  standards of care for inflammatory bowel disease in Australia, and then from those standards, conduct audits in up to 100 hospitals across Australia. It’s an important program that will change the way IBD patients are cared for in hospitals across Australia.  

You mentioned one of the most difficult things is getting passed the stigma of the disease, but what is one of the most rewarding parts of the work you do?

Hearing the stories of people who have been members of CCA for a long time who tell us how things have changed from when they were first diagnosed.

People are more willing to talk about the disease than they were even 10 years ago, there is more support available now, and there’s more communication.

People also tell us that through the work we’ve done they are able to manage their condition better, and just to hear that is incredibly rewarding.

I know that you sit on the Board of the organisation too, so what would you say is key to running an effective Board of an NFP?

Being very strategic, being able to balance the need for sustainability and ensuring that we continue to achieve our mission.

It’s really important for us to keep our eye on the ball, so to speak, and to be strategic and mission driven.

Apart from the changes the organisation is going through, what changes do you see for the future of the disease? Are there any big developments likely on the horizon?

There's a lot of research going on at the moment, particularly in gut microbiota, we’re hoping to learn more about inflammatory bowel disease through this research.

That’s one of the other problems we face. There’s nowhere near enough known about the condition.

We don't have a cure and we don't know how to prevent it yet. We’re getting closer to understanding the disease better and certainly we’re able to manage it better than we have been in the past.

The medications that we have now are much more effective and the side effects are not as bad as they used to be.

What do you consider your greatest achievement to be?

My greatest achievement in this role is getting the first biologic therapy PBS listed for Crohn’s disease which happened a year after I started.

Because of that listing, there have now been other biologic therapies PBS listed and it’s really changed the life of thousands of Australians with IBD, which is something I’m very proud of.

It means that people can now afford the treatment. They used to have to pay up to $30,000 a year for this drug and now they can get it on the PBS, which is fantastic.

How much work went into achieving that?

I started with CCA in 2006 and before me they had lobbied for this drug for about 9 years and then when I started we put a strategy in place and harnessed the energy of our members, IBD medical professionals and the people that desperately needed this drug. We ran a major campaign and together we got it over the line.

What’s your favourite saying?

I suppose the one that I live by is “if you’re going to do something, do it with passion or just don’t do it at all”.

Where does your inspiration come from?

Definitely my parents. They’re courageous, hardworking, they’re very solid and they have a lot of integrity. They have a strong sense of right and wrong and place a lot of value on respect.

I’m also inspired by the people I work with, and in particular our members who overcome adversity to achieve their dreams and goals. Their stories really inspire me.

Is Crohn’s and Colitis disease worse than people think? Can it create a lot of difficulty for people?

Absolutely. It’s significantly worse than people think.

They often confuse it with IBS, which has its own problem for sufferers, but it doesn't put people in hospital and it doesn’t affect the lining of the bowel, which IBD does. IBS is a much lesser condition which can be managed with diet and stress management.

The symptoms of IBD which include severe diarrhoea, bleeding and ulceration of the bowel, can put you in hospital.

People don’t understand it so when someone says I’ve got IBD they automatically think it IBS or that it’s just a bit of gastro. They offer advice like “just have a rest” or even worse. “Have some yogurt, you’ll be fine”.

It’s not ok and yogurt is not the answer.

IBD often requires surgery to help manage the symptoms around 70 per cent of people require surgery for it.

It’s also a young person's disease, but most people associate bowel conditions with older people.

It’s first diagnosed between the ages of 15 and 35 and now even younger people are being diagnosed.

Through the work that you’re doing, what would be your ultimate goal?

I’d like to destigmatise bowel disease. I think that would be the ultimate achievement for people not to have to face the anxiety and fear that they do at the moment when they are first given the diagnoses of Crohn’s disease or Colitis – mainly because they know so little about the condition and is often the first time they have heard of  Crohn’s or colitis

The goal is to let people know that they are not alone, there is support and information available, that research is being conducted to understand the disease better and to hopefully one day find a cure,  and that with proper care and medical therapies, they can lead a normal life.

Right now not enough people know that all this support is available and that we’re here to help them.