Many Australian citizens at risk of early death due to a genetic disease will soon live longer. And one of the key people responsible for this is a scientist of Kosovo origins.
Zanfina Ademi is an associate professor and researcher within Epidemiology and Preventive Medicine Alfred Hospital, part of Melbourne’s Monash University.
Since 2012, she has been working on a research project into preventing early deaths caused by bad cholesterol. The research shows that early diagnosis and intervention can extend the lives of patients from between five and eight years.
Now, Australian lawmakers have taken heed of the groundbreaking research that Ademi has led; from this year, those at risk of Familial Hypercholesterolemia — a genetic disorder characterized by high levels of cholesterol, which leads to early cardiovascular diseases — will have access to state funded screening from early childhood.
While a number of her research projects have now seen governments around the world translating them into health policies, research centers and science are far from top priorities in her country of origin.
As one of the world’s leading health economists, Zanfina Ademi travels extensively to talk about her research. Photo courtesy of Zanfina Ademi.
At the end of September in Kosovo, when political parties were revealing their electoral promises on health care ahead of the October 6 elections (with the usual promises from improving the neglected infrastructure to providing health insurance), on the other side of the world, Ademi was packing her suitcase. She was getting ready to speak at a global conference in Mexico City.
At the event organized by Kidney Disease Improving Global Outcomes, she painted an overall picture about various payment models surrounding chronic kidney disease that exist worldwide; how decisions are made, the role of economic evaluations in different jurisdictions, equity concerns and screening and monitoring in patients with chronic kidney disease.
After spending the first days of October in Mexico City she returned to Melbourne, before travelling again to Copenhagen.
In the Danish capital, she participated in one of the world’s largest annual conferences on health economics, where she gave a talk on her research into screening children with Familial Hypercholesterolemia, treatment and its value for money — the first study of its kind including children aimed at improving outcomes for families affected by this genetic disease.
The conference organizers, The International Society of Pharmacoeconomics and Outcome Research, were so impressed that they gave her the award for the best research presentation across the whole five days.
Ademi also gave another talk about whether adding fish oil to daily diets would improve the lives of patients with cardiovascular disease (spoiler alert — it would).
On this occasion, during her two-day journey between continents and conferences, she stopped in her hometown, Prishtina, as she tries to whenever she can find space in her busy schedule.
On a rainy Sunday afternoon in early November, we head to Tartine, one of Prishtina’s bustling brunch locations, in order to meet each other in person. Sitting next to the subtly lit red brick wall, with a striped blazer draped around her shoulders over her grey turtleneck, the elegant scene contrasts sharply with the image of a stiff and sterile scientific lab.
In fact, there is nothing stiff about Ademi.
Even her brown eyes behind big glasses — the only accessory that hints at the long days and nights spent conducting research — and her short tousled curly hair combined with her outfit add to the artistic nuances that she embodies.
As part of a wide ranging discussion on this cold autumnal afternoon, she talks about visiting the Frida Khalo museum in Mexico City, going to Naples in order to soak in the first person experiences of the protagonists from the Neapolitan Novels by Elena Ferrante, and her favorite local Kosovar artists.
Ademi is equally at home talking about arts and culture as discussing the intricacies of her work. Photo: Majlinda Hoxha / K2.0.
But while she challenges all the constructed stereotypes about scientists, it doesn’t come as a surprise when thinking back to our first meeting over Skype, around two months earlier, when she was sitting in her Melbourne home.
Wearing a dress instantly recognizable as having been designed by Venera Mustafa, and sitting in front of a huge wall covered with works by Fitore Berisha, Jetmir Idrizi, Tina Sulejmani, Agim Balaj and Tadi, it was clear that she is an eager collector of artistic works made in Kosovo.
“When people come here into my home, I want to show them the great art works made in Kosovo,” she had said. “Although many of those I have on my wall have already had their work exhibited abroad.”
The walls of Ademi’s home are covered with works by Kosovar artists such as Tina Sulejmani. Photo courtesy of Zanfina Ademi.
But the enthusiasm in her articulation increases another notch when she talks about what she has done for the last 15 years, during which she has worked at a number of universities across the globe, including in Australia, Finland and Switzerland. She talks passionately about her research and teaching in the field of health services, including economic evaluations alongside clinical trials and clinical registries, chronic disease modelling, health technology assessments and decision analytic modelling for economic evaluations.
In other words, her work focuses on improving a population’s health. And doing so while assessing the implications of new and current health technologies in terms of how effective they are and how much they cost.
This, she explains in a nutshell, is the world of health economics. This branch of economics studies the functioning of health care systems and health-affecting behaviors, while providing a framework for thinking about how society should allocate its limited health resources to meet people’s demands.
Diagnosing a patient early will save lots of money, compared to another case that requires extensive hospital treatment over years.
In order to make it understandable to a layperson she takes the example of her research on Familial Hypercholesterolemia.
Aiming for a more efficient health system she first needs to give evidence about the most cost-effective options for prevention. So introducing monitoring through “cascade screening,” where family members of someone with bad cholesterol are screened, gives a picture of the potential disease at a very young age. In that case, diagnosing a patient early will save lots of money, compared to another case that requires extensive hospital treatment over years.
“Then the state has the evidence for longevity, that the earliest detection extends life,” she says, explaining that will make it easier for the government to decide to include cascade screening as part of services eligible for reimbursement.
“Since the reimbursement cannot be covered for everybody, then the most endangered group, such as the family members of someone with high cholesterol and those with Familial Hypercholesterolemia, is more cost-effective for the state.”
Currently, Ademi and other researchers from the University of Cambridge, the University Medical Center Ljubljana, and the University of Amsterdam are trying to verify if “universal screening” would be cost-effective.
‘We were privileged to go to school’
When Ademi was still a young child in the ’80s, her parents — along with many others at that time — decided to move from their hometown of Bujanoc in southern Serbia to make a new life in Prishtina.
She went on to complete high school at the Xhevdet Doda gymnasium, the only high school not closed to Albanian youngsters in the ’90s, a time when Slobodan Milošević’s repressive regime meant the majority of her teenage peers had to make do with the underground parallel educational system in private homes.
“We were really privileged to have had the opportunity to go to school on a regular basis and have all the lessons,” she reflects. “Of course, there were problems as well. There were no labs, computers or options for research.”
Although she was excellent in chemistry and biology, it was psychology, history and philosophy that really attracted her — and even sports. After finishing high school in ’98, she just wanted to leave the troubled Kosovo and immediately start studying somewhere abroad.
“Our aim was to see the habits of doctors and to see if antibiotics were being prescribed according to guidelines — the answer was no.”
Despite wanting to pursue archeology, she ended up enrolling at the Faculty of Pharmacy in Tirana, Albania.
“This decision was taken because maybe it was difficult times,” she says. “I saw it as a profession that would be more stable for my future.”
In 2003, when she returned to Prishtina, she started working at a pharmacy. But simultaneously, she also started conducting research for an internal publication by the Pharmaceutical Division within the Ministry of Health on the rational use of medication in the country; it provided an insight into the way in which Kosovar doctors prescribed drugs.
“Our aim was to see the habits of doctors and to see if antibiotics were being prescribed according to guidelines,” she says. “The answer was no.”
In 2005, she left for Finland in order to continue her master’s in public health at the University of Eastern Finland, where she was exposed to different research methods, had access to data and learned how to work with statistical packages.
Two years later, she came to Kosovo for a few months to conduct research on the affordability, availability and prices of medicine. It opened the discussion amongst health professionals about price anomalies in Kosovo; the prices of particular medicines in the private sector would vary greatly from one pharmacy to another.
Another aim of the research was to measure the percentage of the average Kosovar salary that went on curing chronic illnesses such as diabetes and asthma.
“The data that we generated was mind blowing, because everything was paid out of the patient’s pocket and a high percentage of daily income went on treating chronic diseases,” she says.
"The state needs to assign a percentage of taxes to science. Because it is science that will enable us to see changes and to develop as a nation."
Ademi highlights the importance of research as a basis for making policy decisions, something that has rarely been the case in Kosovo until now.
“There are people who love science in Kosovo. There are talented people. But there are no funds,” she says.
“The state doesn’t offer these funds. Science hasn’t been a priority. But the state needs to assign a percentage of taxes to science. Because it is science that will enable us to see changes and to develop as a nation. You cannot take any decision without science. Each time you implement something you need to show why it’s worth it.”
She says that the nature of this sort of work is country specific as cultures and systems differ from country to country, but that Kosovo can still learn from neighboring countries “to see how they implemented something, if they did any research beforehand — to see what has been good or bad.”
“It is about not just wasting the state’s money or taxpayers’ money — you cannot abuse people’s money,” she says. “But [it is having] the will to help people.”
Improving policy decisions — and lives
Ademi’s own path toward scientific research was marked when she started her PhD at Monash University, at the School of Public Health and Preventive Medicine, in Australia, her home since 2007.
It’s here that she has really made her name in the field of global health economics.
Much of her work in recent years has been trying to directly link together public health policy and practice when it comes to the state paying for specific medications following clinical trials.
“Part of my work has been to provide evidence of the cost-efficacy for medicines and other health technologies,” she says. “So the research on the cost-efficacy has made it possible for the [cost of these] medicines to be reimbursed in the public health systems of Australia, Switzerland and other countries such as England, Scotland and Sweden.”
Ademi’s research has informed health policies in various countries around the world. Photo courtesy of Zanfina Ademi.
She explains that states will make certain registered health technologies and medicines available, but that the whole point is to convince the state that it is in their interest to pay for them.
“So the state pays and understands that it is a return on investment in the long term,” she says. “Because when you identify something very early on and you treat it, then patients do not need to go to hospital and spend lots of money. So identification of diseases early and successful preventives need to be looked at as investments and not as expenses.”
She says that without political will and lobbying sometimes even cost-effective options are overlooked. This can also mean stagnation in addressing risk factors affecting public health, which can be modified with primary prevention policy interventions.
Ademi gives an example of a new policy recently introduced at state level in her adopted country to help tackle obesity.
“The Victorian government in Australia just announced that they will remove soft drinks from museums, and will install water fountains,” she says. “This is because 25% of children in Victoria are struggling to maintain a healthy weight, and sugary drinks and snack food — soft drinks, sport drinks, snack machines — are part of the challenge. Some forms of soft drink can contain up to 16 teaspoons of sugar.”
“You have to show how many people are dying from smoking compared to non-smokers, then you provide advice on the most cost effective policies.”
Another example she points to is reducing the prevalence of smoking.
“First, you have to show how many people are dying from smoking in comparison to those who don’t smoke, and then you provide advice on policies that are the most cost effective and sustainable,” she says. “One such policy that has worked in Australia is to ban smoking in public places and to increase taxes on smoking — one pack of cigarettes can cost $40 or more. Australia has one of the lowest smoking rates in the world.”
Ademi believes that lessons from this policy can be learnt in Kosovo, where smoking in public places such as schools, cinemas, public work places and bars is banned but the enforcement of this has been very poor. She says that one intervention could be to regulate through the introduction of a “tobacco excise tax.”
Currently, she is working on how to change the lives of epilepsy patients by using more advanced magnetic resonance imaging to guide cost-effective treatment. And, of course, helping to spread the findings of her research to others who want to make a difference in the health populations of their countries.
“I love what I do,” she says. “Travelling and working with people from different countries gives me energy and hope for the future.”K
Feature image: Majlinda Hoxha / K2.0.