Jonathan Simms

Jonathan Simms (1 June 1984 – 5 March 2011) was a man from Belfast, Northern Ireland, who contracted variant Creutzfeldt–Jakob disease (vCJD) in his late teenage years. He was given a post-diagnosis life expectancy of one year, similar to that of other young people who were diagnosed in the same age bracket. However, due to his receiving experimental treatment for the disease (of pentosan polysulfate), he lived for another ten years after diagnosis, although his higher functions were severely limited.

Life and diagnosis Simms was born in Belfast on 1 June 1984. At the time of his diagnosis, he was an athletic teenager who excelled at football and had undergone trials with the Northern Ireland international squad. The doctor who first examined him, Dr. Mark McClean, later said: "It was either multiple sclerosis or variant CJD; I told them that I thought it was MS, because I hoped to God that's what it was." two years after diagnosis, however, he became the first person with vCJD to be treated with an experimental drug that was known to slow the onset of similar diseases in animals.

Treatment In December 2002, Simms' parents won a legal battle in the High Court of Justice of England and Wales for their son to receive an experimental drug called pentosan polysulphate (PPS).

The medical community's objection to the use of the drug was that it has traditionally been indicated for its anti-coagulant and anti-inflammatory properties, which meant using it in high doses on Simms ran the risk of haemorrhage.

Whilst the High Court ruling allowed the administering of the drug, the NHS was not legally bound to be the framework by which it was given to Simms. After the ruling, a neurosurgeon was found who would undertake the procedure(s), but the NHS trust that he worked for would not allow it. Because the molecules of PPS are so large, there was no way that an intravenous or oral treatment would work as the drug would not be able to cross the blood–brain barrier.

In 2007, the treatment appeared to have stabilised Simms and it was announced that he was no longer terminally ill (although the Marie Curie hospice he was due to stay in stated that he no longer fitted their criteria as far back as December 2004). Don Simms (Jonathan's father) said that his son was aware of his surroundings and sometimes "made attempts at vocalisation, and on occasion, we can make out the words".

Death In the later stages of his illness, Simms needed intensive care. He was cared for by his family at their home in the Highfield Estate of West Belfast. Simms died on 5 March 2011, almost ten years after his first diagnosis. He was buried on 10 March 2011 at Carnmoney Cemetery just outside north Belfast.