“At some point, I stopped looking back”
by Philip Elias | 1 Mar 2016 |
A man who has suffered for 14 years from Amyotrophic Lateral Sclerosis (ALS) has been a named president of the Agenzia italiana del farmaca (AIFA)- the peak body for regulating pharmaceutical products in Italy.
Mario Melazzini was named president by the Minister of Health in January 2016, after the previous president stood down as a result of accusations of conflict of interest. Melazzini, a 57-year-old doctor, was diagnosed with ALS in 2002. The average life expectancy for sufferers with this condition is around five years. Melazzini himself is wheelchair-bound and depends on a ventilator and on parenteral nutrition. In the summer of 2003 he had an appointment at an assisted suicide clinic in Switzerland; but he never showed up. Melazzini describes his change of plans simply: “at some point, I stopped looking back”.
In 2006, as president of the Italian Association of ALS patients, Melazzini intervened in the euthanasia debate in Italy that surround the case of Piergiorgio Welby. Among the goals he has in his new role, Melazzini says he wants to encourage the use of generic and biosimilar medicines, and to reinvest money saved to research diseases such as Hepatitis C.
Dr Phil Elias writes from Rome
Neurodegenerative disease is often cited as a reason for requesting assisted suicide or euthanasia. So insights into the motivations of profoundly disabled persons who want to live -- like British physicist Stephen Hawking -- are valuable.
Another victim of ALS in the same league as Hawking is Mario Melazzini, the new chairman of the board of the Italian counterpart to the FDA in the US. He has been in a wheelchair for 14 years and is completely dependent upon carers. Nonetheless he expresses an infectious optimism about life.
When I started to look at my disease with fresh eyes, I understood it and made a fresh start on life. The moment I stopped thinking about what I could not do because of ALS, but what I could still do for myself, for my children and friends, my life changed …
Life is a gift, an asset which must be nurtured from the moment of conception to natural end, even with illness. Life must not be manipulated according to an ideology. We need to realise that in any condition, when properly supported, everything can be seen as a great opportunity … The only incurable thing is the will to live!
Michael Cook
Editor
BioEdge
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