Professor Len Harrison still cherishes the $10 000 microscope Sue Alberti gave him more than thirty-five years ago: ‘Sue sat in my little office in the Endocrine Laboratory at the Royal Melbourne Hospital and said, “How can I help you kick off this research?” I told her the first thing we needed was a special microscope to detect the antibodies to the islet cells in the pancreas that are the sign of type 1 diabetes. Sue funded the microscope, and that was literally the start of dedicated type 1 diabetes research in Australia’.
Sue and Len have long had a friendship of love and respect, having supported each other through a series of achievements and personal losses. At the mention of Len, Sue becomes animated, smiling broadly and gushing with unrestrained enthusiasm: ‘Len Harrison is the most gorgeous man I think I’ve ever met, next to my husband. I love him dearly. He is one of the nicest people … one of the most down-to-earth, intelligent men you’ll ever meet in your life. He has been with me through Angelo’s death, my father’s death and my daughter’s death. You know how some people touch you in life? Len is my number one’.
Medical research scientists are driven by hope and required to manage expectations, distractions and crippling disappointment. This is why the leading researchers in a particular field—as with diabetes—are usually a close group, characterised by professional respect and singularity of purpose. One of the most distinguished research scientists in Australia is Sir Gustav ‘Gus’ Nossal. Sue says talking to Gus is like ‘sitting next to God’.
Gus spells out the context of autoimmune research priorities: ‘The concept of autoimmune diseases was born first in America, then it came here to Australia. When the Walter and Eliza Hall Institute [in Melbourne] changed its focus from viruses to immunology, I got caught up in the field of immunology. Autoimmune disease is a horrible thing. Those very white cells of the blood that are supposed to defend you against microbes—bacteria, viruses and the like—turn treacherous. They begin to attack components of the body itself … We were very early into the field of autoimmune, identifying and classifying and studying diseases, but we missed diabetes as one of those … Of course, since then we’ve taken an enormous interest. While lupus, multiple sclerosis and rheumatoid arthritis are important, they are not as important as type 1 diabetes given that it’s the most common, it’s fatal without treatment, and there is quite a lifetime of concern to get that insulin dose right’.
He makes a final point: ‘Diabetes is a vicious enemy, and what you have to try and do is keep those blood sugars level. When the sugar levels are consistently high, that’s when the complications occur—vascular leakage and retinal damage, and coronary artery disease, which is even more common in diabetics than it is in older males’.
Len Harrison speaks quietly and realistically about the critical fight against diabetes: ‘Medical research is sometimes a matter of getting so close and then … pfft. For example, I’ve just spent ten years on a nasal vaccine trial to prevent type 1 diabetes, and if it turns out to be negative, well, you just pick yourself up and keep going’. The professor raises a common theme of medical research, where ‘cure’ is an indefinite term: ‘Whether we can actually take someone with diabetes and cure them? There are multiple research avenues into preventing or curing a disease. Often, we can achieve results in animals that we hope will translate to humans. But they may not, for a number of reasons. We work with inbred animals as models of human diseases, but of course every human is genetically different’. In Len’s view, ‘Manipulating the immune system is the key to everything—prevention and cure’.
In his current role as clinician scientist at the Walter and Eliza Hall Institute, Len is investigating how environmental factors interact with genes to influence the development of type 1 diabetes. ‘The incidence of type 1 diabetes has increased by about threefold in the past forty years,’ he explains, ‘due to the environment somehow acting on our genes, so we’re focusing a lot on gene-changing and epigenetics. It will take time, but I think we will be able to reverse the trend. We’ve been at the leading edge of this for the last thirty or forty years. We haven’t found the cure yet, but we’ve made a lot of progress’. Len adds that the progress made in that period has paralleled Sue’s involvement: ‘I’m not going to say she’s responsible for it, but she’s certainly been an amazing catalyst’.
So how likely is it that a cure for diabetes will be found? Sue’s simple response to that question comes from the knowledge gained from years of close observation and detailed conversations: ‘How do you define “a cure”?’
Professor Tom Kay, director of the St Vincent’s Institute of Medical Research in Melbourne, esteemed scientist, and another long-time friend of Sue’s, puts it this way: ‘In a lifetime of medicine, many, many things change. A good example is hepatitis C, which has really been cured in the last couple of years. All sorts of things happen with diseases over many decades. People who say there will never be a cure for diabetes, and that it will always be treated by insulin injections, I think are a bit negative’. He continues: ‘People have been a bit burned by the idea that we’ll have a cure within five or ten years. I’d prefer to say people diagnosed now at five or ten years old will live a normal life until seventy or eighty years old, and a lot will happen in that period of time. The big question is whether we will still be treating diabetes by delivering insulin through some form of injection, through a device. Will insulin be the mainstay of diabetes treatment in fifty years or will there be something else? I do think there will be a cure, but it will happen gradually. With all the regulatory hurdles and clinical trials, these things take time’.
Gus Nossal agrees: ‘A cure for diabetes is difficult because by the time the diabetes is detected, 90 per cent or more of the insulin-producing cells are gone. But, if we can figure out some way of taking away that destructive fury of the white cells that have turned rogue, that have turned treacherous, that would be the aim in diabetes prevention’. Gus is gently matter-of-fact when summing up the outlook for medical science: ‘Sometimes there’s a great breakthrough like penicillin, but medical research is usually a slow creep forward. It’s like a drip wearing away the stone’.
Medical research is funded in Australia largely through official government grants from the National Health and Medical Research Council. Individual project grants are generally awarded for three to five years, program grants for a group of people run for five years, while a fellow-ship—the pinnacle of funding success—usually also entails a five-year agreement. This means that many scientists spend several months each year writing grant applications to cover the costs of their work, including their own salaries. There is no guarantee that money will be provided year-on-year, and the applications are assessed via a contentious peer-review system—although Gus Nossal, for one, supports the intent of the practice: ‘Putting a project together in a way that will impress your peers is a good discipline’. The other avenue of funding involves the so-called ‘soft money’ provided by disease-specific organisations and philanthropic bodies, which researchers rely on to keep them going between grant rounds. As Len Harrison explains, ‘Sue, by her efforts and contributions, has plugged the gaps and allowed the work of many researchers to continue’.
Sue is readily acknowledged by all the leading diabetes researchers as having been a key part of the area for many decades. Tom Kay describes her as ‘the most significant diabetes philanthropist in Australia by a mile. Sue is a force to be reckoned with, someone who can be very helpful and who can get things done’. Dr Mark Cooper, a world-renowned specialist in diabetes complications, concurs with Tom, saying that Sue ‘is the doyenne of philanthropy in this country, unbelievably committed and unbelievably hardworking’. Mark says that Sue has a particular interest in his team’s research ‘because we work on kidney and cardiovascular complications of diabetes, which, unfortunately, was a problem for her daughter Danielle’, adding that Sue ‘remained committed after her daughter died—that is a very important point’.
Tom’s view is that Sue’s response to Danielle’s diagnosis was to ‘throw herself into a mode of “Something should be done about this disease”. And then she went about finding out what she could do, in her hands-on way’. Tom describes this as operating at ‘an organisational level aspect of how the system is going to beat the disease. There has been an enormous amount of “roll up the sleeves” and she gets very involved. It was her way of dealing with the incredible pressure of her daughter being sick. A lot of people would retreat into the family shell, perhaps, but Sue saw the bigger opportunity of playing a leadership role with these organisations and trying to find out what could be done’.
A key to gaining the respect of any specialist in their field is understanding how to best interact with them, and, in the case of medical research, identify where to add value. ‘Sue’s interest is goal-based and people-based. It’s not specifically in cells and DNA, that’s not her thing. It’s about people’, observes Tom.
Motivated by personal experience, not by personal gain, Sue’s initial drive to contribute to diabetes research was likely an attempt, at least in part, to assuage a sense of guilt and helplessness at not being able to save her own daughter. Len Harrison’s soft voice speaks volumes: ‘It was very, very sad, but actually, I don’t think it was preventable. I think it was inevitable. Danielle died from the complications of diabetes’. As unacceptable as this sounds with all the advances that have occurred in modern medicine, it is a fact echoed by Tom Kay: ‘Danielle died of serious complications of the disease. With type 1 diabetes, eyes, kidneys and nerves are affected. Danielle had problems with her eyes and her kidneys. To die is very rare but it still does occur and some people are prone to complications. We still don’t really know why’.
Tom acknowledges the difficulties faced by diabetics in managing their treatment, the pressure to get everything right, to get all the factors working effectively. Gus Nossal agrees, believing that the biggest issue for newly diagnosed diabetics is ‘the practicality of being a normal person yesterday and today, but tomorrow “I need to give myself three or four injections”. Add to that the discipline with diet and the fact that it’s going to go on for a long time. The sustaining of that person by good dialogue and discourse and clever explanations is very, very important. It’s important that it is explained very early on that with the right management, a person can live very close to a normal life. Exercise, diet and a good night’s sleep are very important’.
While managing the treatment of diabetes—keeping blood sugar levels stable—is one area of focus, another is aiming for freedom from insulin dependence. Colin North articulates his wife’s motivation and approach regarding this: ‘The thing that spurs Sue into action is the “deaths in bed” syndrome in teenagers, the idea of losing them after they go out from the tight control of their parents into making it on their own’. Colin then talks about the DANII Foundation, set up by Donna and Brian Meads-Barlow after the death in her sleep of their diabetic daughter Danii, and which ‘focuses on legislation for diabetics under twenty-one years of age to be provided with continuous glucose monitors. These cost about $6500 to buy, which is a prohibitive discretionary cost for young people. The DANII Foundation really touched Sue. Children dying at night happens too often’.
Colin recalls his own education about diabetes over many years, in particular an early Gala Ball where footage of young kids was used to promote diabetes research: ‘They always looked so healthy but they’d talk about the needle-pricks they’d had, which were in the thousands. And the insulin injections that were in the thousands as well. They were little kids and I’d think, “This isn’t right, there’s something wrong here”’.
Australian publishing icon Ita Buttrose, whose daughter Kate was diagnosed at thirteen with a rare form of juvenile arthritis, recalls when she first met Sue: ‘It was like we had always known each other. We are very similar—we are “can do” women. In the same way she was determined to raise awareness about diabetes, I was determined to raise awareness about arthritis’. But frustration creeps into her voice when the 2013 Australian of the Year says that both women face the same challenges in putting young people’s chronic diseases on the public radar: ‘There is a perception that these diseases are something older people get. Other diseases seem to capture people’s imagination’.
Indeed, Paul Zimmet, Professor of Diabetes at Monash University, says the disease had ‘Cinderella status’ in the 1970s and 1980s, a comment on the lack of appreciation for what was to become a global chronic-disease epidemic. He recalls his frustration and sadness in those decades, and even in the mid-1990s, in attempting to get both type 1 and type 2 diabetes on the international agenda as a major public health issue. ‘Fortunately, the message hit home in Australia in 1996 with the appointment of a new federal health minister’, he writes in his autobiographical essay ‘The Power of One’. ‘Michael Wooldridge had seen a publication, The Rise and Rise of Diabetes in Australia, that my institute had prepared for Diabetes Australia … Michael committed the Liberal Party to a pre-election promise of eight million dollars for tackling diabetes.’
Both Sue Alberti and Ita Buttrose, as active fundraisers for research into the diseases affecting their children, are well aware of how an unfashionable reputation impacts the money flow. They are also personally and painfully aware of the lifestyle challenges faced by children with these conditions. Ita saw juvenile arthritis force her daughter to give up many things, including pleasures such as piano playing. ‘These diseases place a lot of restrictions on kids who are incredibly resilient’, she says. ‘They are not frightened to ask questions. They ask outright, “Mum, am I going to die?”’
Ita also recalls Sue telling her that Danielle once asked if she would ever get better: ‘We need people like Sue with a philanthropic spirit to keep encouraging people to keep looking for a cure—to say, “Don’t give up, keep trying. It’s there somewhere”’.