User:AnonEMouse/Charlotte

Workspace for Charlotte_Cleverley-Bisman article.

Article plan
From skimming a number of the below, it looks like a reasonable plan for the article to be: Lead                                           (Photo) Table of Contents Early life (up to 7 months, will have to be short!) family, background Meningitis: necessary background, focusing on this strain in New Zealand Onset on Cleverley-Bisman                      (Possible photo if article long enough) Junior: how they were at first two faces, then J's death underscoring that C-B's survival was not at all guaranteed NZ Meningitis campaign: with Perry Bisman's vocal participation Cleverley-Bisman's recovery and subsequent life (Photo with artificial limbs)

= Article development =

Meningococcal disease in New Zealand
In 2004, New Zealand was in the thirteenth year of an epidemic of meningococcal disease, a bacterial infection which can cause meningitis and blood poisoning. Most Western countries have fewer than three cases for every 100,000 people each year, with New Zealand averaging 1.5 before the epidemic started in 1991; in 2001, the worst year of the epidemic in New Zealand, the rate hit 17. 5400 New Zealanders had caught the disease, 220 had died, and 1080 had suffered serious disabilities, such as limb amputations or brain damage. Eight out of 10 victims were under 20 and half were under 5 years of age. The internationally low proportion of deaths from the disease had been credited to wide publicity of the disease and its symptoms. In June 2004, Charlotte Cleverley-Bisman became the face of the epidemic.

Onset
The morning of June 17, 2004, Cleverley-Bisman vomited and was unhappy, but the parents took it as anticipated teething pains. By mid-morning she developed a small blemish on her neck, and her mother rushed her to Waiheke Ostend Medical Centre, where staff diagnosed meningitis. In ten minutes she was covered with small spots. She was injected with penicillin, and rushed to Starship Children's Health by helicopter. Half an hour after the first spots were noticed, she was blistered, swollen, and purple over her entire body, with her extremities blackening. She was not expected to survive, and needed to be resuscitated twice during her first half hour at Starship. She was connected to life support systems which fed her, transfused blood and drugs, and assisted her breathing.

The second day, Starship doctors said that if she lived at all, Cleverley-Bisman would need to have at least both legs and most of her left hand amputated, to save her life from gangrene. During the three weeks while doctors waited for demarcation between dead and living flesh to become clearer, her catheters became clogged several times and needed to be replaced with additional surgery. By the end of June, it was clear that all four limbs would need to be amputated. This was done on July 2, amputating both legs and left arm "optimistically", through the knee joints, rather than above them, hoping to preserve the growth plates at the end of the long bones, which would allow for better use of prosthetics later in life.

Cleverley-Bisman's parents helped the case to be publicised nationwide to raise parents' awareness of the speed of the disease, and to highlight the need for a vaccine. Charitable donors gave money to defray their expenses, beginning with NZ$1000 from the Jassy Dean Trust, set up after another girl died from meningococcal disease.

Junior Uluvula
On July 8, 2004, nine-month-old Sakiusa "Junior" Uluvula, from Mangere, had his right hand, right foot, half his left foot and the tip of his nose amputated at Starship Children's Health. His twin brother Nasoni had escaped infection, despite always being with Sakiusa. After the disease struck, the twins looked nothing alike. The Uluvulas were of Pacific Island ancestry, mother Tima Uluvula having moved to New Zealand from Fiji 17 years before. Meningococcal disease affected Maori at twice the rate and Pacific Islanders at four times the rate of New Zealand residents of European descent.

For a month, Uluvula joined Cleverley-Bisman as the national face of the epidemic. The Cleverley-Bisman and Uluvula families supported each other emotionally, and in spreading awareness of the disease. The babies were reported on together. But while Cleverley-Bisman grew stronger, Uluvula lost function in his kidneys, and fought fever and infection. Both babies lost more of their limbs to surgery, Uluvula losing both legs, and Cleverley-Bisman losing her right leg and right arm above the joints. Uluvula died at midnight on 19 July, 2004.

Immunisation Awareness Society
Norwegian-made documentary airing on TVNZ's Sunday programme this weekend. The hour-long documentary raises concerns over the safety of the Norwegian vaccine on which the New Zealand vaccine is based. It claims there are severe side effects, including chronic fatigue syndrome, which causes pain, muscle weakness and loss of brain function, and myelitis, which causes paralysis of nerves. Immunisation Awareness Society spokeswoman Sue Claridge said ... "Parents were unaware that they were providing their children with a highly experimental vaccine."... the trials in Norway proved there was a link between the use of the vaccine and chronic fatigue syndrome. Free meningococcal B immunisations were introduced in 2004 and are available to people aged between six weeks and 19 years. The Ministry of Health says the high rate of sickness at schools is unrelated to meningococcal B vaccination. Trials before the vaccine programme began found that common side effects included fever, vomiting and diarrhoea in young children, and headache and general malaise in adults and children. New Zealand has one of the world's highest rates of meningococcal-B and the Health Ministry has launched a nationwide programme aiming to vaccinate 90 per cent of people under 20.The school-based immunisation programme began in Waikato this week. "The Ministry of Health has spent over $200 million on the campaign," In the United States and Singapore, where children had to have immunisation against diseases such as measles, diphtheria and hepatitis B, children had to show proof of their immunisation before they could attend school. The meningococcal-B vaccine protected the person who had been vaccinated but did not appear to stop them carrying the bug and passing it on to someone else. no plans to make vaccination compulsory.
 * "NZ vaccine backed in run-up to TV programme", By Kate Chapman, NZHerald,November 03, 2006meningococcal B immunisations
 * "Vaccine not to blame for sick schools, says ministry", By Martin Johnston, 12:00AM Tuesday May 31, 2005
 * "Make meningococcal vaccination compulsory, says Hamilton doctor", 12:00AM Tuesday March 29, 2005
 * "Dispute over meningococcal B vaccine risks goes on", 12:00AM Monday November 08, 2004,By Martin Johnston

Immunisation Awareness Society and the Vaccination Alternatives Society are questioning the safety of the MeNZB vaccine. In a $200 million project, the Government aims to vaccinate 90 per cent of New Zealand's 1.1 million people under the age of 20. Those in Counties Manukau and Auckland City suburbs at higher risk of the disease were the first to receive the vaccine, starting in July.Severe allergic reactions, nerve damage and chronic fatigue syndrome were reported by some adults or adolescents given the Norwegian vaccine which is the "parent" of the New Zealand vaccine. But these side-effects were rare, occurring in no more than one in 10,000 patients. Side-effects linked to the New Zealand meningococcal B vaccine include: Swelling at the injection site in up to 34 per cent of patients. Irritability in 49 per cent of infants and 41 per cent of toddlers. Headache in nearly a quarter of children and adults. Convulsion linked to high fever "very rarely" - in less than one in 10,000 patients. This kind of convulsion is generally considered harmless. 12:00AM Tuesday July 13, 2004, By REBECCA WALSH Sue Claridge, principal researcher and spokeswoman for the Immunisation Awareness Society, said there was a "climate of fear"There's a very small percentage of people, 0.009 per cent of New Zealanders, get meningococcal disease each year. Of those the ministry says 4 per cent die. That's a really, really small percentage of people." Since the epidemic began in 1991, the disease has made more than 5400 people sick and killed 220.Ms Claridge said the $200 million being pumped into the nationwide vaccination programme would be better used addressing risk factors such as overcrowded housing, poverty and nutrition.
 * "Campaigner urges care on vaccine",

2004
Meningococcal Disease
 * 
 * Information Archive - Information Update, 31 July 2007 MeNZB™ vaccine best defence against killer disease

June

 * "Baby's case shows need for a vaccine", NZHerald, June 22, 2004
 * "Baby Charlotte's surgery postponed", by Rebecca Walsh and NZPA, June 30, 2004, NZHerald.
 * "Family's diary of a nightmare" NZHerald, June 28, 2004 - detailed day by day by Perry Bisman
 * "Meningococcal disease ravages a 'perfect angel'", By Stuart Dye, NZHerald, June 28, 2004 - long, links to above
 * "Agonising decision over baby Charlotte", June 29, 2004 by Rebecca Walsh - minor

July

 * "Over $2000 raised for baby Charlotte", July 01, 2004 - short, mentions Jassy Dean trust
 * "Hardest decision for baby Charlotte's parents", July 02, 2004 - short, but marks day of amputation
 * "Baby Charlotte's limbs amputated in marathon operation", July 03, 2004, By Rebecca Walsh
 * "Meningococcal vaccine drive to start", July 08, 2004, By Martin Johnston - minor mention

Junior

 * "Another baby loses limbs to killer disease", July 09, 2004, By Juliet Rowan and Rebecca Walsh - introducing Junior Uluvula
 * "Babies endure more surgery" July 10, 2004, By REBECCA WALSH and RENEE KIRIONA - minor
 * "Tracking down a killer disease", July 11, 2004 By Martin Johnston - long, but minor mention of Charlotte&Junior
 * "Three-year-old Isabella protected against meningococcal disease" July 12, 2004 By RENEE KIRIONA - minor; Bisman angry
 * "Parents offer cash to beat queue for vaccinations", July 13, 2004, By RENEE KIRIONA - trivial mention
 * "Editorial: Grab chance to eradicate killer disease", July 14, 2004 - trivial mention, NZ strain of disease
 * "Vaccine officials ask parents not to jump queue", July 14, 2004, By Ainsley Thomson - trivial
 * "Two babies battling disease face more surgery", July 14, 2004, By Stuart Dye - Mr Bisman launched a stinging attack against anti-immunisation campaigners. Meanwhile, Mr Bisman launched a stinging attack against anti-immunisation campaigners.

In yesterday's Herald, Sue Claridge from the Immunisation Awareness Society, said there was a "climate of fear" and many parents felt vaccination was their only way to fight the disease. ...dismissed the argument that the $200 million being spent on immunisation would be better used addressing poverty, overcrowded housing and nutrition. "We do not live in an overcrowded house, are not poverty-stricken and Charlotte was a perfectly healthy European baby girl whose diet included mother's milk, vitamin supplements, fruit and she had never had a sniffle in her life."
 * "Meningococcal baby back on ventilator", July 19, 2004, By ALAN PERROTT - about Junior, Charlotte better
 * "Meningococcal baby dies in hospital", July 19, 2004- about Junior, Charlotte better
 * "Junior at peace, says mother", July 20, 2004, By ALAN PERROTT
 * "Meningitis stole Junior from his family" Kids Friendly New Zealand - died 19th July; by Timi Uluvula, mother

August

 * "Meningococcal disease strikes Waiheke again", August 03, 2004, By REBECCA WALSH, health reporter - July 24, Robyn Bailey, aged 49, was diagnosed with meningitis -More than 5400 people have caught the disease, which can cause either blood poisoning or meningitis. More than 220 have died and more than 1000 have suffered serious disabilities or brain damage.
 * "Meningococcal cases link unlikely" August 04, 2004, By Martin Johnston
 * "Baby Charlotte out of Starship", August 10, 2004 - short


 * "Baby wins meningococcal fight", TVNZ, Aug 10, 2004 - became known as the face of the disease; nine-month-old; hundreds of gifts sent to her and her family and around $60,000 donated; not going to cover costs for even a year.injuries are horrific and she is in a lot of pain


 * "'Miraculous' baby Charlotte measured up for new limbs", By REBECCA WALSH, August 14, 2004 - medium length

video from TVNZ
 * http://tvnz.co.nz/view/video_popup_windows_skin/436391?bandwidth=128k Brave Baby Charlotte  	 	 15-07-2004
 * http://tvnz.co.nz/view/video_popup_windows_skin/440888?bandwidth=128k Baby Charlotte Heads Home 		09-08-2004
 * http://tvnz.co.nz/view/video_popup_windows_skin/436378 Holmes: Brave Baby Charlotte (08:28)   	 	 15-07-2004

Fall
to her mouth with both artificial hands. Among those at the birthday celebration was Tima Uluvula, who lost her son Junior to meningococcal disease soon after Charlotte became ill. The two families have become good friends. Mr Bisman ... urged parents to get their children vaccinated; low turn-out for the meningococcal vaccine; grateful for the support they had received, including building work on their home.
 * Early success of the meningococcal B immunisation programme celebrated Disease/Infection News 10-Sep-2004 -Immunisation Conference in Rotorua. "It is fitting that Perry Bisman, the father of "Baby Charlotte" Lucy Cleverley-Bisman, opens the conference."
 * Meningococcal B vaccine celebrated, TVNZ, Sep 11, 2004 - Perry Bisman; "Our daughter is a living example of what can happen if you don't vaccinate against it."
 * "Barriers to preventing a killer disease", September 19, 2004, By Geoff Cumming - trivial mention
 * "Baby Charlotte comes home", November 25, 2004, By REBECCA WALSH - artificial arms and legs, had learned to roll over and was saying "mumma" and "dadda".could now put a cup
 * "Our top ten New Zealanders: Perry Bisman", December 18, 2004 - Extraordinary father ... passionate advocate for the meningococcal vaccination programme. Larger article at Editorial: Let's hear it for the best of our best

2005

 * TV ads soft says Charlotte's dadApril 03, 2005, By Amanda Cameron - a harder-hitting campaign is needed to encourage more New Zealanders to immunise their children.The advertisements should have more detail about the harm the disease can cause, said Mr Bisman, who has been disappointed by the uptake of the vaccine on Waiheke Island, where Charlotte lives.

Meningococcal B Immunisation Programme director Jane OHallahan said the advertising of therapeutic products was governed by Advertising Standards Authority codes and Medicines Act requirements. The advertising guidelines prohibit advertisements for therapeutic products from playing on peoples fears "without justifiable reason" and from suggesting that failing to the use the product will have "harmful consequences".

meningococcal B last winter, will speak at: 12.30pm on May 11 at Community House, Motueka, 3.30pm on May 11 at the Wesley Centre, Richmond 9.30am on May 12 at Fairfield House, Nelson 1.00pm on May 12 at St Andrew's Church, Blenheim.Mr Bisman strongly supports the MeNZB™ vaccine
 * The meningococcal B epidemic has affected more than 5600 New Zealanders and claimed 227 lives.
 * About 75 per cent of meningococcal cases are caused by the epidemic strain.
 * More than 570,000 doses of the meningococcal B vaccine have been given to children aged 19 and under.
 * In Counties Manukau, where the programme first began last July, coverage in the various age groups is as high as 85 per cent.
 * Nelson Marlborough District Health Board Press Release, 5 May 2005, Perry Bisman, whose daughter Charlotte lost the lower parts of all four of her limbs to


 * "Perry Bisman", May 5, 2005, West Coast District Health Board Mr Bisman and his family while living in the Auckland District Health Board catchment area, actually live on Waiheke Island and didn't have any of what many people consider the classic risk factors for the disease. While statistically people living in over-crowded homes are some of the most at risk Mr Bisman knows only too well that Meningococcal B disease can strike anyone at any time.
 * "Perry Bisman Evening", May 11, 2005, West Coast District Health Board story brought tears to many of those who attended eyes His daughter is now as he describes healthy and happy and at 18 months is yet to realise that she is different from other children in that she has no hands or legs. Once of the most important fact parents wanted to know was whether their child could catch Meningococcal B from having the vaccination. As the vaccine contains no live bacteria there is no risk of developing the disease. There have now been more than 600,000 vaccinations delivered nationally and no children have developed the disease as a result of being immunised.


 * "Lives changed forever by meningitis", by Susie Nordqvist, The Ashburton Guardian, May 27, 2005. June 17, 2004 started out like any other day – Mr Bisman went off to work at his job as event co-ordinator for a jazz festival, leaving his partner, Pam Cleverley, at home to care for their now 19-month-old daughter....worked for 40 minutes trying to save her life and during that time resuscitated her twice.would later see Charlotte’s legs amputated through the knee, her left arm to the elbow and her right arm halfway up her forearm.


 * "Charlotte’s a Survivor" Canterbury District Health Board Health First June 2005, Issue 23, Perry Bisman has been touring the South Island on behalf of the Ministry of Health to inform parents about the effects of meningococcal B and how quickly it can attack, and recently he addressed a series of public meetings in Canterbury. Charlotte, who turns two in November,

largest immunisation programme ever undertaken in New Zealand.


 * "Disease baby's dad lashes vaccine 'hate-speech'", June 12, 2005, By Amanda Cameron - Perry Bisman ... accused anti-vaccination campaigners of spreading false information about the vaccine and making unsubstantiated allegations about the Ministry of Health. "defamatory and slanderous" remarks made by researcher Mrs. Barbara Sumner Burstyn on TVNZ current affairs show Close Up; The epoxy acrylic resin legs, worth about $4000 each, will be shorter than Charlottes own legs would be and will lack feet to enable her to stand more easily. Charlotte, who was only eight months old when she had amputation surgery, has adapted to her truncated limbs, scooting around quickly and manipulating objects easily with her "stumpies".
 * Public Meeting - Meningococcal B Campaign, 2005-06-30. City of Dunedin. Speakers: Perry Bisman Father of Charlotte Bisman, who contracted maningococcal B disease as a baby in 2004
 * Charlotte gets her fourth set of new limbs, July 10, 2005, By Amanda Cameron - the country's youngest-ever quadruple amputee is getting her fourth set of legs. Designed for function rather than form, Charlotte's new legs will be short, cylindrical stumps with a bevelled base to enable her to stand more easily.


 * "THE MeNZB CAMPAIGN OF FEAR – A $200m SCANDAL"By Jason Sanders, September 1, 2005, Excerpted from UNCENSORED Magazine: Issue 1 Number 1 Spring 2005 - poor efficacy of the Norwegian vaccine (reported by The Lancet to be 57%); the epidemic (such that it was) has been on a steep deline (75%) here for the last three years

Running time: 1 x 60 minutes Year of Production: 2005 Produced by: Greenstone Pictures
 * "Baby Charlotte", This heartwarming documentary tracks a year (2004-5) in the life of Auckland baby Charlotte Cleverley-Bisman, who had all four limbs amputated at the age of six months due to meningococcal meningitis. The cheery baby endures hours of therapy and limb-fittings as her parents attempt to give her as 'normal' a life as possible. (Producer Cass Avery, Director Karen MacKenzie) Greenstone Pictures
 * Also BABY CHARLOTTE, The first time she pulled herself up by her hands was the last time Charlotte Cleverley-Bisman would ever use them. Charlotte became the unwitting national face of Meningococcal B in New Zealand when she lost her legs and arms to the disease. Baby Charlotte charts Charlotte’s path from her hospital discharge onwards. It details the hopes and fears of her parents who have had to make enormous changes to their lives. Her courage and ingenious adaptation to a life without limbs is captured in this acutely personal portrayal of Charlotte and her family.

??
 * Parents urged to take up vaccine, TVNZ, Bisman, who wants other parents to take advantage of what has come too late for Charlotte.

2006

 * Celebrities club together for Charlotte fundraiser, February 24, 2006, By Stuart Dye - became the face of the meningococcal vaccine - unique condition, disability and age, she falls through the gaps within most social support agencies - Craig Innes, Joe Stanley, Marc Ellis, Ian Jones, Grant Fox, Ofisa Tonu'u, Frano Botica and April Bruce. The auction included memorabilia signed by Michael Campbell. The proceeds will all go towards giving Charlotte the chance for mobility. golf day and charity auction raised NZ$73,000. ; Charlotte's story will feature on Inside New Zealand on TV3 on Thursday.
 * "A killer on the wane" July 08, 2006, By Martin Johnston - 2 years 8 months - Publicity surrounding Charlotte ... created high expectancy ... mass vaccination in July 2004

she survived, and without brain damage.

Several months after the programme began, journalist Barbara Sumner Burstyn and researcher Ron Law - formerly a medical laboratory scientist who professes a "low regard for the medical profession" after years of reading medical literature - began criticising the ministry campaign in a series of magazine and internet articles and public meetings.Law says it was a campaign of fear based falsely on the number of all cases, not just the epidemic strain. The $222 million "to try to prevent at most a handful of deaths a year" would have been better spent on improving housing.He is proud to have dissuaded "10 to 15 per cent" of parents from having their children vaccinated and says he was never paid, "other than petrol money".

The ministry's director of public health, Dr Jane O'Hallahan, says 1 to 3 per cent were dissuaded and many of these later signed up. She says that level of indecision added a new burden for the campaign's front-line nurses. The public were badly served by the Sumner Burstyn/Laws views gaining a half share of some media coverage, when "99.9 per cent" of doctors supported the campaign.

The Government is claiming success for the campaign, both in vaccine uptake and in beating back the epidemic. The target was to vaccinate 90 per cent of those aged 6 weeks to 19 years. So far 80 per cent have had three doses. The rates are lower for 18 and 19-year-olds - and for Maori aged 1 to 4, who at 73 per cent are nearly 10 points behind the non-Maori-non-Pacific rate.

O'Hallahan says the most common reported bad reaction to the vaccine was a slight fever. One or two cases of severe allergic reactions were reported, a lower rate than for other vaccines. No deaths have been linked to the vaccine.

The key statistics the ministry relies on in asserting that the vaccine is killing - but has not yet killed - the epidemic are the reduction in epidemic strain cases in the Auckland-Northland region in the target age group: 84 in the year before mass vaccination started compared with 20 the year after. A 76 per cent reduction. Among Maori it is 90 per cent.

Law says the ministry graphs prove his point, that the epidemic was going away by itself. The ministry argues that, based on the Norwegian experience, the epidemic could have lasted another 15 years and that the pre-vaccination reduction in cases from 2001's peak might have been another cyclical trough.


 * "Vaccine campaign beating meningococcal epidemic",July 03, 2006, by Martin Johnston - Baby Charlotte Cleverley-Bisman became the face of the campaign; now aged 2 years 8 months; She is unable to walk and is expected to need a wheelchair, but she is pulling up on furniture and she skateboards. "She can get her arms and torso on the board. She's able to skateboard around [using] some special soft liners from her artificial legs. She can push along the ground without getting grazed."reduction in cases was dramatic. South Auckland has been one of the areas hardest hit by the epidemic, which has disproportionately affected Maori and Pacific Island babies in poor suburbs.Sceptics have pointed to the downward trend nationally in cases before the mass vaccination started, but Dr O'Hallahan said that trend was not true of Auckland-Northland, where the 76 per cent reduction occurred after vaccination started. There had been fluctuations previously in the epidemic, but it had been expected to last for up to another 15 years.
 * Free vaccine call to save children, 12:00AM Thursday July 27, 2006 - pic Charlotte Cleverley-Bisman and her mother Pam (right), at yesterday's rally.; pneumococcal disease

2007

 * "Democracy, or Orson Welles' 1984?", Letter to the Editor, published in British Medical Journal, Hilary Butler, 9 June 2007 - In New Zealand, The Meningitis Trust, IMAC (Immunization Advisory Centre), and the Health Department encouraged TV, and newspapers to endlessly recycle the footage of Charlotte Bisman who lost her arms and legs from meningococcal disease, not just for MenZB purposes, but also to advocate Prevnar. ... The New Zealand Health Department funded and chaperoned Charlotte's father on a speaking tour throughout the country to campaign on their behalf...