Fighting for Women’s Health

After Jane Hill’s mother passed away from stomach cancer, she devoted her work to ensuring other women have a fighting chance. Hill is this week’s Changemaker.

Sunday 8 May is not only Mother’s Day, but also World Ovarian Cancer Day. Chief executive of Ovarian Cancer Australia Jane Hill wants to raise awareness for the disease, which can be difficult to detect and diagnose.

Her aim is to make teal, the colour for ovarian cancer, as well known as the pink for breast cancer.

As this week’s Changemaker, Hill discusses the imperative of awareness-raising, and explains how she stays motivated in the face of suffering.

What made you want to work in the Not for Profit sector?

My father was the guiding person for me because he was always involved in civic affairs, and he always encouraged myself and my brothers and sisters to give back.

So your early life had a big influence on you?

I grew up on a farming property in central Victoria. From an early age I was given a lot of responsibility. When I was eight years old, I had to drove 400 cows and calves 20 kilometres along a road with my pony Captain and my sheepdog Shandy. He [my father] was so excited that someone who was eight years old could do that. So I think in my early life my parents really encouraged me to have a go and not be afraid of anything. That has been my guiding force: to say don’t give up, work hard and give it a go and things will happen.

Why did you chose to focus on ovarian cancer?

It’s [because of] my mother – I dedicate my work to my mother because one of my greatest griefs was losing my mother to stomach cancer. She had symptoms for about 12 months before she died and I just kick myself because we weren’t more attuned to it.

She had such courage but she was really quite miserable in the last couple of months of her life. I got the chance to work here at Ovarian Cancer Australia, and in everything I do here I think of my mother. I think other women shouldn’t have to go through what they go through with ovarian cancer. So I’m absolutely determined to make a big change to ovarian cancer.

Each year 1,480 women are diagnosed and the survival rate is abysmal at 43 per cent. I would like to see teal be the new pink, because teal is the international colour for ovarian cancer. I think of breast cancer and what fantastic inroads have been made to that disease in the last 10 years and it shows [with] determination and resources, what changes can be made. There’s a lot more awareness and survival rates are a lot better and I want that for ovarian cancer.

What are your current priorities at Ovarian Cancer Australia?

Well there’s four main areas of focus. The first is in research, and Ovarian Cancer Australia has launched an action plan for medical research into ovarian cancer and that’s a blueprint for the conduct of medical research here in Australia. It recommends that there be much more collaboration in the sector between research institutes and also overseas. It also points out the areas of high impact where philanthropy can put their dollars in for the best bang for their buck. Ovarian Cancer Australia enables high-impact research and we contribute to that. In the coming years we want to do a lot more enabling and finding venture capital to fund research into ovarian cancer.

We’re also into advocacy and some of that is in fact advocating for new and innovative drugs to become available here in Australia. There’s are a lot of what they call “targeted therapies” that are new in the US and the UK. We want them here in Australia because we now know that ovarian cancer isn’t just one cancer, it’s actually got a whole lot of subtypes. So for many years we have treated ovarian cancer… as one size fits all, it’s the same regime. Now we know that ovarian cancer is a lot of subtypes and each of those needs different treatment modalities. There are now a lot more drugs coming onto the marketplace overseas and we have to advocate for them here in Australia. And in fact just recently, Ovarian Cancer Australia was invited by the Pharmaceutical Benefits Advisory Committee to be one of the first organisations to appear before them for a consumer hearing into a drug that they are considering listing for the PBS.

This particular drug… you can get it in Australia, but at the moment it will cost you $35,000. It doesn’t save a woman’s life but it gives them seven months of quality of life. Seven months that they wouldn’t have probably otherwise. There was a lady that I was talking with about a month ago who has three sons that are doing VCE this year. She said to me, Jane I would really love to see my children finish their VCE, but she said on the other side, I don’t want to laden them with $35,000 worth of debt. So it’s a very tough thing, how much value do you put on a life.

[Another area] is awareness and what’s really important to know about ovarian cancer is that it does have symptoms. There is no early detection test. About 50 per cent of Australians think that it can be detected by a pap smear and that’s absolutely not the case – that is cervical cancer not ovarian cancer. It does have symptoms, but the symptoms are very generalised. There’s four common symptoms – pelvic or abdominal pain, feeling full after you’ve had a small meal, bloating of the stomach or feeling urgency when you need to go to the toilet. They are very generalised symptoms and they could be indicative of anything, but if you’ve had those symptoms for four to six weeks than you need to go and see the doctor and have yourself checked out. There’s no easy way to detect ovarian cancer. Sometimes it’s only found once a woman is actually operated on. The other point about awareness is that 20 per cent of ovarian cancer is inherited. So it’s important to know your family history. And if you do have a family history of cancer it is important to tell your GP so together you can assess your risk and take any action such as increased surveillance or surgery.

Most of our work is in the support of women and their families that have ovarian cancer. We provide a lot of information. We have a tele-support line that women can ring up and ask any sort of question or have a chat. We are also just about to launch an online forum for women so they can communicate with one another in a secure environment at any time of the day. We run lots of support groups for women and we have what we call a “resilience kit” for newly diagnosed women. It gives them all the information that they need to know about the disease.

What keeps you motivated when you’re faced with women who have ovarian cancer?

I’m inspired by women living with the disease. I am absolutely determined that we’ve got to have a game changer for it because I see far too many women that have to go through it, and I think that this can’t happen to others, we’ve got to do something. I keep motivated in that way. It can be quite tear jerking and emotional but I just think of the women in the future, and if I can avoid more women getting this disease than I can feel like I’ve contributed.

What are the challenges in leading your organisation?

This organisation isn’t large, we only have 14 staff here. The challenge for me is getting the reach, getting to the 5,000 women nationally that are experiencing ovarian cancer. So that’s a challenge to actually find them because there is no centralised system. We want to find them to be able to provide support and assistance to them.

What we’re trying to do is work smarter and look for innovations especially through technology. If we can use technology such as our online forum to connect women with one another, that’s where we’re heading. So always finding a smarter way of doing things because we’ve got limited resources.

I think that the challenge is staying on top of the professionalisation of Not for Profit organisations. As a small organisation it’s hard, and I think the competition and expectation of donors have increased. I think the challenges with limited resources is being able to stay on top of the game and being able to communicate your offer to your stakeholders.

Is there anything that frustrates you about the Not for Profit sector?

I think that they’re probably too many Not for Profit organisations. I have been involved in, in my career, in two mergers of Not for Profits. I really like to encourage organisations to at least work collaboratively with one another and, if possible, to look at mergers because I think it’s a way to reducing cost and developing more specialisation for organisations. I think there are some really good reasons to consider a merger. I also think that people that are considering establishing foundations or other NFP entities should be first considering if there is already in existence an organisation that they could work through.

Do you see yourself staying in the Not for Profit sector for the rest of your career?

I did have a stint outside of the Not for Profit sector when I worked at KPMG, and that was very exciting. I authored their flagship publication, the Company Director’s Toolkit. That was exciting, but really my heart is in the NFP sector. I really love working with the value-based staff and volunteers. I continued to get inspired by the women in this organisation and what can be done because people are all behind the cause. So I don’t think I’ll be moving from the NFP sector again into commerce. In the NFP sector… you have to run them [organisations] like businesses, so there are similarities there.