No one could save my little sister’s life, now medical research can

Fabiola Licinio (right) died from what is now a curable illness at the age of four. Julio Licinio

My life was entirely shaped by the successes and failures of medical research so, to me, it seems incomprehensible that there should even be a debate about the importance of funding medical research.

My sister Fabíola (above) had non-Hodgkin’s lymphoma at the age of four and died in 1964. I was six at the time.

These are my first memories: She had her first symptoms in March, had her fourth birthday in June and died in August 1964.

If I remember correctly, the photo above was taken just a few days before she died. That was her last outing.

After being in hospital a few times she was essentially sent home to die, with a brief stop at the park, where the picture was taken.

She was buried in that same pink outfit, holding her favorite doll. We both look serious and sad in the picture.

Fabíola used to be plump, and full of life and energy. In those days, cancer diagnosis was just not discussed with children. However, she must have known she would die soon, as you can clearly see in the picture.

Just around the time the picture was taken she dropped a glass of water from her side table in the middle of the night and as my frightened parents came rushing in she calmed them down by saying, “No need to rush, I am not dying yet.”

We used to be absolutely inseparable. I don’t remember a single childhood experience until then in which we were not together.

That abrupt loss was the most violent thing I have ever experienced. The solitude that followed has been absolutely unbearable.

My parents did all they could, including privately importing chemotherapy from the United States, which was very hard to do and particularly expensive at that time.

But those early drugs were not effective for non-Hodgkin’s lymphoma during childhood. Today, that disease is over 80% curable, thanks to medical research.

As someone who suffered so profoundly due to a fatal illness in the person who was the closest to me - an illness that has subsequently been conquered by medical research - I have very strong feelings about the need for research investment.

Proposed cuts to the medical research budget to reach an unnecessary budget surplus that represents nothing more than a 2013 election-geared political benchmark is beyond the beyond. It is unconscionable.

I am not sure whether the government was expecting its most loyal supporters to go marching in state and the national capitals.

This raised the issue of budget priorities and threw the national agenda straight into the arms of the Opposition as Tony Abbott declared that cuts in medical research demonstrate the Government’s lack of priorities.

As this debacle unfolded, a new rumor surfaced that the medical research budget would not be cut. ABC online reported on 19 April 2011 that “Prime Minister Julia Gillard has appeared to confirm reports that a planned $400 million cut from medical research has been scrapped.”

This was declared obliquely and without a firm statement. That may not be politically possible, but is highly desirable for the sector.

Australia is not very competitive at the international level in many sectors. Can any reader name a sophisticated manufactured product that can be made cheaper and better in Australia than elsewhere?

Medical research is a rare sector in which we effectively compete, albeit on shoestring budget, with the brightest and the best in the world.

I have an older brother, Rui, who is 12 years older than me. He is a clinical anaesthesiologist. Rui tells me that when he started working in operating rooms, the most common surgery was gastrectomy - total or partial removal of the stomach - due to perforated ulcers.

All young surgeons would develop their first surgical skills on that exceedingly common procedure. Rui told me recently that a few weeks ago a patient arrived in the operating room with a bleeding ulcer and a semi-retired surgeon had to be rapidly brought in, because not a single medico on call had ever done a gastrectomy.

How did this surgery go from being the most common to being almost a historical relic? Australian Nobel Laureates Barry J. Marshall and J. Robin Warren discovered in Perth in 1982 a new microorganism, the bacterium Helicobacter pylori, and correctly attributed to it the cause of most cases of gastritis and peptic ulcer disease.

Thanks to their work, ulcers rapidly changed from creating an intractable chronic illness that led to gut bleeding and surgery, to a curable condition that is treated with a course of antibiotics.

Was this a fluke? A lucky strike that happened 30 years ago? No. Australian medical research saves lives worldwide daily.

Examples of Australia’s excellence and international competitiveness in medical research abound.

However, once leadership in a highly competitive area is lost, it may never be possible to attain the international eminence that this country now has in this very visible, important and economically meaningful sector.

The effects of budget cuts would be irreversible, as they would wipe out an entire generation of researchers. A rigorous process of peer-reviewed grants funds medical research.

Any cuts would affect grants to young researchers who have less of a track record. Once early-career researchers lose or fail to attain funding, they will leave the field forever.

The effect of that generation gap in medical research productivity would be felt for decades.

While the Australian medical research community, doctors, nurses, and patient advocacy groups are very grateful for the government’s funding of medical research, these rumours of drastic budget cuts approaching – then supposedly being averted – are very detrimental.

The rationale given is that “everything has to be looked at” as a potential budget cut target. That, however, is untrue. As the new budget season rapidly approaches, we have not heard rumours of large cuts to the military.

In the United States, as the budget pressure grows far more intensely than in Australia, two sectors are isolated from discussions regarding budget cuts: the military and medical research.

Can’t we do the same in Australia and have medical research join the military as two sectors that are exempt from discussion on government budget cuts?

Isn’t the country better off having our talented medical researchers in the lab, discovering breakthrough cures, instead of organizing rallies and demonstrating in the streets?

To raise awareness of the importance of medical research in Australia, The John Curtin School of Medical, Australian National University, has launched Project Australia for Medical Discovery: An Awareness Campaign for Support of Medical Research. We hope you will visit us there.