| 词条 | Jonathan Simms |
| 释义 |
| name = Jonathan Simms | image = | alt = | caption = | birth_name = | birth_date = 1984 | birth_place = Belfast | death_date = March 5, 2011 (aged 26 or 27) | death_place = Belfast | nationality = British | other_names = Jonny | occupation = | years_active = | known_for = Experimental treatment for vCJD | notable_works = | parents = Don and Karen Simms }}Jonathan Simms (1984 – 5 March 2011) was a man from Belfast, Northern Ireland, who contracted the variant Creutzfeldt-Jakob Disease (vCJD) in his late teens. His life expectancy post-diagnosis was given as being only one year which is the same as other young people who were diagnosed in the same age bracket. However, due to an experimental treatment (of pentosan polysulfate), he lived for another ten years after diagnosis, although his higher functions were severely limited.[1] Life and diagnosisSimms was born in Belfast in 1984 and was, by all accounts, an athletic teenager who excelled at football[2] and had undergone trials with the Northern Ireland International squad.[3] He initially displayed symptoms between May and September 2001 of a disease which was consistent with either multiple sclerosis or vCJD.[3] The doctor who first examined him, Dr. Mark McClean, later said It was either multiple sclerosis or variant C.J.D.; I told them that I thought it was M.S., because I hoped to God that's what it was.[4]From diagnosis to death (depending on a varying number of circumstances), patients with vCJD are given a life-expectancy of between six months and two years. Simms was given a year to live,[5] however, two years after diagnosis he was the first person with vCJD to be treated with an experimental drug that was known to slow the onset of similar diseases in animals.[6][7][8][6] TreatmentIn December 2002,[9] Simms' parents won a legal battle in the High Court in the United Kingdom for their son to receive an experimental drug[10][11] called Pentosan polysulphate (PPS).[14] The legal challenge centred around the fact that whilst the drug had been shown to decelerate the onset of the disease in animals, it had not been tested on humans. Eventually, Dame Butler-Sloss ruled in the family's favour stating: {{quote|"Where there is no alternative treatment available and the disease is progressive and fatal, it seems to me to be reasonable to consider experimental treatment with unknown benefits and risks, but without significant risks of increased suffering to the patient, in cases where there is some benefit to the patient.[12]}} The medical community's objection to the use of the drug was that it has traditionally been described for its anti-coagulant and anti-inflammatory properties, which meant using it in high doses on Simms ran the risk of haemorrhage.[9] This was also clouded by the fact that an effective dose and a lethal dose, were very close to each other when it was tested on animals and so there was an inherent risk of killing Simms just by giving him the drug.[4] The family were forced to go back to court when the UK ruling was found to have no validity in the Province of Northern Ireland, but in January 2003, the High Court in Northern Ireland ruled in favour of the treatment.[13] Whilst the High Court ruling allowed the administering of the drug, the NHS were 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 pill ingestion would work as the drug would not be able to pass safely between the bloodstream and the brain.[4] Eventually a method of delivery was established with a catheter that went up his body from his stomach directly into his brain. Injections were then administered by this shunt straight to the folds in the patients brain.[4] By September 2003, it was reported by his primary care team that he had regained the ability to swallow, his body weight had stabilized and returned to normal and that his anxiety levels had decreased. His family were critical that when they first wanted to apply the drug in March 2002, Simms was able to walk and talk for himself. By the time the case had been heard by the courts system, 8 months had elapsed and Simms' condition had deteriorated.[14] In 2007, the treatment appeared to have stabilized 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).[15] Don Simms (Jonathan's father) said that his son was aware of his surroundings and sometimes "made attempts at vocalization, and on occasion, we can make out the words".[9] By this time, PPS had also been administered to 12 people who also had vCJD, There was one death, some who continued deteriorating and six patients where the disease appeared to have stabilized.[16] DeathIn the latter 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.[17] He was buried on 10 March 2011 at Carnmoney Cemetery just outside north Belfast.[18][19] Notes1. ^{{cite web|title=List of names – Justice for Andy|url=http://justice4andy.com/list-of-victims/list-of-names|website=justice4andy.com|accessdate=26 April 2017}} 2. ^{{cite news|last1=Boseley|first1=Sarah|title=Hopes raised on new vCJD treatment|url=https://www.theguardian.com/uk/2003/sep/27/bse.sarahboseley|accessdate=25 April 2017|work=The Guardian|date=26 September 2003}} 3. ^{{cite news|last1=Ó Cionnaith|first1=Fiachra|title=High-profile court battles and survivors|url=http://www.irishexaminer.com/ireland/high-profile-court-battles-and-survivors-237392.html|accessdate=25 April 2017|work=Irish Examiner|date=20 July 2013}} 4. ^1 2 3 {{cite news|last1=Belkin|first1=Lisa|title=Why Is Jonathan Simms Still Alive?|url=https://www.nytimes.com/2003/05/11/magazine/why-is-jonathan-simms-still-alive.html|accessdate=25 April 2017|work=The New York Times|date=11 May 2003}} 5. ^1 {{cite news|title=Johnny's story|url=http://news.bbc.co.uk/1/hi/programmes/real_story/3018717.stm|accessdate=26 April 2017|work=BBC|date=12 May 2003}} 6. ^1 {{cite news|title=CJD drug study to start in weeks|url=http://news.bbc.co.uk/1/hi/health/3735127.stm|accessdate=27 April 2017|work=BBC News|date=21 May 2004}} 7. ^Rachael Farber, a 21-year old woman from Liverpool was given a drug called Quinacrine to see if this would slow the effects of the disease. Quinacrine was previously used on humans, but for other diseases such as malaria. At the start of her treatment she was bed-ridden, but within three months she was able to walk and swim unaided. However, the treatment was having a profound side effect on her liver and the drug was withdrawn. Farber died as a result of vCJD at the end of 2001. 8. ^{{cite news|last1=Schwarcz|first1=Joe|title=The Right Chemistry: Methylene blue shakes up the medical world|url=https://montrealgazette.com/opinion/columnists/the-right-chemistry-methylene-blue-shakes-up-the-medical-world|accessdate=27 April 2017|work=Montreal Gazette|date=12 August 2016}} 9. ^1 2 {{cite news|last1=Highfield|first1=Roger|title='Dramatic' results of CJD treatment|url=https://www.telegraph.co.uk/news/science/science-news/3313916/Dramatic-results-of-CJD-treatment.html|accessdate=26 April 2017|work=The Telegraph|date=10 November 2007|language=en}} 10. ^The drug has already been used to relieve cystitis and bladder pain, but in this instance was untested on humans via a direct route into the brain 11. ^{{cite journal|last1=McDowell|first1=Natasha|title=Controversial vCJD drug to be administered|journal=New Scientist|date=10 January 2003|url=https://www.newscientist.com/article/dn3254-controversial-vcjd-drug-to-be-administered/|accessdate=27 April 2017}} 12. ^1 {{cite news|last1=Laurance|first1=Jeremy|title=CJD case teenagers win right to 'unsafe' treatment|url=https://www.independent.co.uk/life-style/health-and-families/health-news/cjd-case-teenagers-win-right-to-unsafe-treatment-9020610.html|accessdate=26 April 2017|work=The Independent|date=18 December 2002}} 13. ^{{cite web|last1=Dyer|first1=Owen|title=Family finds hospital willing to give experimental CJD treatment|pmc=1124972|website=nih.gov|publisher=BMJ : British Medical Journal|accessdate=26 April 2017|date=4 January 2003}} 14. ^{{cite news|title=Hope as new treatment halts CJD in teenage boy - Independent.ie|url=http://www.independent.ie/irish-news/hope-as-new-treatment-halts-cjd-in-teenage-boy-25932682.html|accessdate=26 April 2017|work=Independent|date=27 September 2003|language=en}} 15. ^{{cite news|title=Teenager with vCJD 'stable'|url=http://news.bbc.co.uk/1/hi/northern_ireland/4092363.stm|accessdate=27 April 2017|work=BBC News|date=13 December 2004}} 16. ^{{cite news|last1=Highfield|first1=Roger|last2=Johnstone|first2=Helen|title=CJD patient 'no longer terminally ill'|url=https://www.telegraph.co.uk/news/uknews/3313096/CJD-patient-no-longer-terminally-ill.html|accessdate=26 April 2017|work=The Telegraph|date=17 December 2004|language=en}} 17. ^{{cite news|title=Belfast man with vCJD dies after long battle|url=https://www.bbc.co.uk/news/uk-northern-ireland-12667709|accessdate=26 April 2017|work=BBC News|date=7 March 2011}} 18. ^{{cite news|last1=Madden|first1=Anne|title=Valiant Jonathan Simms laid to rest after long vCJD battle - BelfastTelegraph.co.uk|url=http://www.belfasttelegraph.co.uk/news/northern-ireland/valiant-jonathan-simms-laid-to-rest-after-long-vcjd-battle-28596607.html|accessdate=26 April 2017|work=Belfast Telegraph|date=11 March 2011|language=en}} 19. ^{{cite news|last1=Wade|first1=Jennifer|title=Belfast man suffering from variant CJD passes away|url=http://www.thejournal.ie/belfast-man-suffering-from-variant-cjd-passes-away-100653-Mar2011/|accessdate=26 April 2017|work=The Journal|date=10 March 2011|language=en}} References{{reflist}}{{DEFAULTSORT:Simms, Jonathan}} 4 : People from Belfast|1984 births|2011 deaths|Medical controversies in Ireland |
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