My personal life has been entirely shaped by illness and the impact of medical research. The black and white picture below shows my sister Fabíola and I in a park in 1964.
At that point she had advanced stage 4 non-Hodgkin's lymphoma. She died a few weeks after this picture was taken, wearing the same pink frock and holding her favourite doll, seen in the photo. My parents went to enormous trouble and expense to import chemotherapy from the USA, to no avail. In 1964 non-Hodgkin's lymphoma of childhood was 100% fatal. Now the cure rate is over 80%, thanks to medical research. When Fabíola died I was so upset that it took me decades to recover. From protracted mourning to survivor guilt, the impact of that death shaped my life. For someone like myself who suffered tremendously due to a disease which was incurable and whose cure has been subsequently achieved through medical research, the proposed cuts to the NHRMC budget are unconscionable.
On a very positive note, my mother, Áurea (Golda in Portuguese), lost her own mother early on. My gandmother died at age 47 due to malignant hypertension, which was out of control and sky high blood pressures. My mother suffered enormously because of that death - and she knew that she had the exact same disease. Her blood pressure could get as high as 240/180 mm Hg (normal is 120/80). Untreated she would have died at the same age as her mother. Later in life, my mother also developed breast cancer. As I was born when she was 39, it is certain that without medical research I would have become an orphan very early on. Below is a black and white photo of my mother taken at the same age (late 40's) as her own mother died.
However, medical research always caught up with her. I would usually be the one going to the drugstore to have my mother's prescription filled and buy her meds. When I went to medical school and studied pharmacology, the easiest part of that course was the antihypertensive medications. I knew those by heart in historical order: reserpine, diuretics, ß-blockers, adrenergic receptor antagonists, calcium channel blockers, angiotensin-converting enzyme inhibitors, centrally acting adrenergic drugs, among others. After taking some combination of medications for some years, my mother would just know that they were no longer working, and she would typically say: "These headaches... I think my blood pressure is out of control again." We would rush to measure her blood pressure and lo and behold: 220/140 mm Hg or some other catastrophic number. She would rapidly see a cardiologist and fortunately medical research would faithfully present new drugs not tried on her. The meds would work for another few years, and then fail, but there would be by then yet newer medications that controlled her blood pressure. This routine repeated itself from the 1960's until the 21st century.
When she was diagnosed with breast cancer, she had state-of-the-art treatment, guided by medical research. My mother, Áurea Licinio, died in 2007 neither from hypertension, nor from breast cancer. The picture in colour shows her visiting us in Miami in August 2007, one month before she died. Medical research gave my mother forty years of an active, happy, and highly productive life, with two careers, school teacher until she retired and then a second career as a hotel manager. She raised me very well. The idea that after losing my sister to a now curable disease, I would lose my mother in early childhood if it were not for medical research is almost too much to bear.
Australian medical research has been among the best in the world and contributions originating in Australia have saved or improved lives both here and worldwide. I am the Director of the John Curtin School of Medical Research (JCSMR) at The Australian National University (ANU), seen on the top of this page in colour and here at night. Created based on the idea of the great Australian scientist Howard Florey, who discovered penicillin and launched the era of antibiotics (Nobel Prize, 1945), the John Curtin School was the place where three other medical researchers won their Nobel Prizes for seminal discoveries: John Eccles (1963) for his work on nerve cells and Peter Doherty and Rolf Zinkernagel (1996) for their work in immunology. Importantly, while Director of the John Curtin School, Professor Frank Fenner (in the red jumper) chaired the Global Commission for the Certification of Smallpox Eradication and announced the eradication of the disease to the World Health Assembly on 8 May 1980. The eradication of smallpox, the world's most pathogenic disease, which caused 500 million deaths in the 20th century alone, is considered by many the most important medical accomplishment in history. At the time of Professor Fenner's death on 22 November 2010, Prime Minister Julia Gillard, speaking in Parliament, paid tribute saying that Professor Fenner was a man of “exceptional integrity, modesty and generosity of spirit’ who “showed that Australians are capable of great things.” She subsequently announced that the late Professor Frank Fenner would be honoured with a State Memorial Service. Is this government truly honouring Frank Fenner's memory by drastically cutting the NHMRC budget and thereby making it much harder for the current generation of Australians to "achieve great things," to cure disease and to improve human lives?
The proposed drastic cuts to the NHMRC budget represent an unnecessary and artificial political benchmark. These cuts show that the well being of the Australian people is not a priority. Why is the government not only jeopardizing the health and well being of Australians, but also alienating its most loyal supporters, when it can least afford to do so?
Very moving story - thanks for sharing.
ReplyDeleteJulio,
ReplyDeleteThanks for the insight, commitment and passion for the quality of life that medical research can deliver for everyone.
John Shine
What a stirring anecdote. As a student working towards a medical career, I get that bench work by researchers underpins much of what doctors can do by the bed. The best physicans of the day stood helpless in the face of deadly infections until the arrival of penicillin.
ReplyDeleteA very painful experience that hopefully will help others. The cuts need to be widely advertised because I don't think the lay person is aware of the consequences. In addition, the PM on the radio said it isn't certain that the cuts will happen. To counteract this, maybe you need to state the reasons/evidence why you think there will be cuts, to stay one step ahead?
ReplyDeleteDear Prof Julio
ReplyDeleteYour life story is truly full of emotions and certainly acted as a springboard to launch yourself in such noble medical research pursuits. On a personal note, I understand such feelings as I myself lost my father in Dec 2009 with B-cell lymphoma and my mother's sister with ovarian cancer in 2002. Recently, I witnessed a young man, 31 years, died of Acute Leukemia, leaving behind a wife and 1 year old son; I'm sure many other people are afflicted by the loss of loved ones with this horrible disease that is cancer.
Politicians need to be advised properly on the necessity of medical research (mainly translational medicine in this day and age) and let's hope they get the message.
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