Dear Premiers: You're gambling with babies' lives.

An Open Letter

Dear Premiers and Ministers,

We represent some of the parents and relatives of babies across Australia that have died and battled to survive pertussis (whooping cough).

Firstly, we thank all governments that introduced free whooping cough boosters to parents and carers of newborns since mid 2009. However, we are distressed by the Victorian Government’s decision to cease the program by 30 June 2012, and fear other states will follow.

Why end a program when the epidemic is not over and health authorities worldwide are advising all adults in contact with newborns to have a whooping cough vaccination? Is it worth saving money at any cost?

Please, keep the free booster program in place until you have completed a rigorous review. Give the experts time to find the best and most cost-effective alternative.

Don’t just stop a program without a replacement, and leave parents confused and their babies unprotected.

Whooping cough is notoriously contagious and complex to control. There is no cure and whooping cough can kill 1 in 200 babies that catch it. Since 2008, eight precious Australian babies have died in an epidemic that reached over 38,500 cases in 2011. Without your intervention, we believe the hospitalisations and deaths would be much higher.

At least half of the babies infected with Whooping cough are hospitalised for weeks. We witnessed our tiny babies cough violently until they went blue, choke and vomit on the thick mucus, and stop breathing. It was hell knowing they were at risk of pneumonia, convulsions and brain damage. It was heartbreaking seeing some of our babies in intensive care, with ventilators breathing for them. Our babies fought hard to survive, but the battle continued at home, with months of coughing and sleepless nights as we monitored every breath.

For those of us whose babies have died, our lives have been shattered.

The only way to stop infants dying from whooping cough is to prevent them catching it. In Australia, cocooning is our only defence. Vulnerable newborns are not born with adequate antibodies to protect them against the disease, and do not gain immunity through breastfeeding. If they come into contact with someone infected during those first months, they have 80% chance of catching it. Babies are not protected until they are at least four months old and have received two doses of the whooping cough vaccine, and are not fully protected until after their third dose at six months.

Adults are a major reservoir of this disease, with an estimated 50% of infant cases infected by a family member and adults representing half of all notifications last year. The problem is that most adults don’t know they need a booster—only 11.3% nationally have had one—or that immunity gained from the vaccine or infection can wane as quickly as six year.

Your free boosters and awareness programs provide parents with lifesaving information on ‘cocooning’. We can protect our babies by ensuring everyone around them is up-to-date on their vaccinations until they are old enough to be vaccinated; and also be on alert for anyone with symptoms.

We are passionate about informing parents, because so many of us were not warned and given the chance to protect our babies. That is why we share our stories with health departments, including Victoria Health, NSW Health and the Federal Department of Health and Ageing. But please, don’t rely on the headlines of our dying and suffering children to raise awareness. We need a sustained, proactive program to inform expectant parents on how to prevent whooping cough, just like they need to be warned about rubella, chicken pox, spina bifida, listeria and SIDS.

Worldwide, cocooning is recommended by health authorities to protect babies. In Australia, this includes the Immunise Australia program, Australia’s National Centre for Immunisation Research and Surveillance (NCIRS) and each State and Territory health department. In the United States, cocooning is actively promoted by the Centre for Disease Control, the Advisory Committee on Immunization Practices and the American Academy of Pediatrics.

So, why is Victoria Health claiming cocooning is ineffective when experts are pleading with adults to get a booster? Why contradict your own advice and undo all the good work?

We appreciate the program was temporary, but are shocked at the irresponsible statement made by the Victorian Health Minister David Davis to justify stopping the program. In an estimates hearing, Mr Davis and his Divisional Executive Director Professor Brook claimed the Pharmaceutical Benefits Advisory Committee (PBAC) had concluded the cocooning strategy was not clinically effective in protecting newborns, providing clear evidence it should be discontinued.

This is false and dangerously misleading, especially when there are 1734 cases of whooping cough reported in Victoria this year, including 90 babies.

PBAC assessed two submissions to add whooping cough vaccines for both parents of a newborn to the National Immunisation Program (NIP). PBAC’s role is to assess the cost-benefit based on the criteria of quality-adjusted life year (QALY): how much it costs to save one QALY.

In an article in The Conversation, Professor Peter McIntyre, Director of the NCIRS clarifies why these statements are incorrect: “The PBAC did not ‘determine vaccinating parents was not effective in protecting newborns’. Rather, it found that, under its criteria, this was unlikely to be cost-effective. Similarly, the PBAC didn’t ‘determine there is no clinical effectiveness’, it said clinical effectiveness was uncertain.”

PBAC don’t make clinical recommendations. These are made by the Australian Technical Advisory Group on Immunisation (ATAGI), who write the Australian Immunisation Handbook—which has recommended cocooning since 2003. ATAGI recommends whooping cough vaccination for adults planning a pregnancy, both parents as soon as possible after the birth of their child, other adult household members, grandparents and carers of young children.

In its assessment, PBAC acknowledged the vaccine protects adults against whooping cough and reduces severity of disease. However, the submissions provided no evidence on how effectively cocooning protected a baby from infection, with no before and after evaluations of programs available at that time. Therefore, PBAC concluded there was uncertain effectiveness of cocooning.

“The submission did not provide clinical evidence on the comparative efficacy in preventing pertussis in susceptible infants when the vaccine is provided to parents shortly after birth… PBAC considered the clinical effectiveness of the intent of the requested program to reduce the transmission of pertussis from parents to infants was uncertain as no evidence was presented on the relationship between vaccine efficacy in adults and transmission to infants.”

As a result, PBAC also concluded high and uncertain cost effectiveness of cocooning. This is because herd immunity for whooping cough is incredibly difficult to achieve. Immunity, whether acquired from the vaccine or natural infection wanes over time. If we are to create effective cocoons to protect babies, 95% of the community needs regular boosters. This means children, adolescents and adults. But, how can we achieve herd immunity when the majority of adults have not had a booster? Vaccinating just the parents of a baby is not enough. Are all workers and visitors in the hospital vaccinated? What about the neighbours? The person at the shop? Extended family? The other parents at school? It just takes one infected person to infect a newborn.

This is compounded by the vaccine being approximately 85% effective, which means some vaccinated people can still catch whooping cough. While their symptoms are generally milder, they are still infectious.

PBAC factored these complex issues into its economic modelling. It calculated between 596 and 1804 parents would need to have booster to prevent one baby being infected and hospitalised with severe pertussis, and to prevent a death, 83,333 to 262,388 parents would need a booster. This may cost up to $200,000 per year of life a baby gains (QALY).

However, ATAGI accepts a rate of 16 children per 100,000 being hospitalised with whooping cough and 4.5 deaths per year under 4 years old. These cold figures are the reality of health funding in Australia.

The sad fact is more babies would have to die to achieve PBAC’s criteria.

As the families affected it is hard to find these statistics acceptable. Aren’t our babies worth trying to prevent their infection and save their life?

We put it to you: how many more babies would have died if you had not introduced the program? How many babies did you protect from infection and how many lives has your program saved?

We also ask: did PBAC, and have you, assessed the cost to hospitalise our babies and try and save them, and the ongoing medical costs for those that survive? We believe these figures dwarf the costs of the booster program.

Beautiful Kailis Smith died on April 22 2011 at just 10 weeks old. He fought for his life in intensive care for four weeks, which is estimated to have cost over $2 million.

Sweet Dana McCaffery died on 9 March 2009. She spent four days in a regional hospital, with two dedicated nurses, required an intensive care team to airlift her to Brisbane, and was in intensive care for two days before she died. She was one of five babies airlifted from her area of the Northern Rivers over four weeks to Brisbane.

You can watch an interview with Dana’s parents Toni and Dave here at 13:20:

[youtube http://www.youtube.com/watch?v=IipHGEWikeo&version=3&hl=en_US&rel=0]

Courageous Tori-Rose was hospitalised on 11 September 2010 and remained in hospital until 24 September. She fought for her life, and when sent home kept having coughing attacks for up to eight months. She is now two years old and is treated for severe asthma and is undergoing tests for sleep apnoea.

Then there is the ultimate cost. Have you calculated the impact of losing a child for each family? Or the cost for families who sat by their babies’ cots each night for months, helping them to breathe through each coughing fit. Many of us could not work for months, our other children have suffered, and we’ve required Medicare-funded support and counselling to just get up each day.

The vaccine is not perfect, but it is the only defence we have at the moment. Vaccinating parents does not provide an iron-clad cocoon, but it’s a vital start. Latest research suggests the vaccine is waning more quickly than expected and does not effectively cover all strains. A solution proposed is to introduce more boosters for children. Why should adults be any different?

We agree with the Australian Medical Association, the Victorian Government has made a hasty decision. There is no evidence that cocooning is not effective—it is too early to make that call. It is also too early for a better alternative.

When we sought the advice of the Centre for Disease Control in the United States they stated: “Until additional evidence is available, we still support cocooning and encourage all close contacts of infants be vaccinated.” We plead with Australian health authorities to do the same.

Please, keep the programs in place and maintain awareness schemes. In the meantime, work with your colleagues around the world to identify the best program to protect newborns and develop a more effective vaccine.

You now have the data to undertake thorough assessments. NSW Health and the National Centre for Immunisation Research and Surveillance (NCIRS) has a study underway at the moment, and we understand Queensland is doing the same.

We ask you to assess:
•    What are the rates of infant infection before and after introduction of the program?
•    What is the number and cost of hospitalisations of infants with Whooping cough across Australia including emergency transport, dedicated staffing, intensive care treatments and out of hospital support pre-and post the program?
•    What are the ongoing health and associated medical costs of babies hospitalised with Whooping cough?
•    Did the parents of babies hospitalised receive a booster and did they test positive for Whooping cough?
•    When did the parents have the booster? Did they have it straight after the birth in the hospital or wait several weeks?
•    Of all the adults infected with whooping cough, how many of them had a booster? What were the costs involved in their medical care and loss of productivity?

We also ask you to work with the NCIRS to assess alternatives, such as their trial of vaccinating newborns and research into vaccinating pregnant women, so a baby has protective antibodies from birth. The United States’ Centre for Disease Control (CDC) introduced vaccination of pregnant women in 2011 to complement—not replace cocooning. The CDC are beginning a study to look into the effectiveness of cocooning and vaccinating pregnant mothers and are happy to collaborate with Australia.

Available later this month, the United States AAP will release a report from its Cocooning Round Table held in March 2012. In Europe, a is studying vaccination before and during pregnancy, and at the .

Consider preliminary studies. In January 2012 it was reported that in California, where 10 infants under three months old died of whooping cough in 2010, the cocooning vaccination strategy had led to a sharp drop in infections from 9154 cases in 2010 to 2795 cases in 2011, and no deaths, which was the first time since 1991.

As notifications decrease, it’s not time to declare victory or become complacent. Waning immunity and low adult vaccination rates mean that whooping cough will never go away. A consistent, long-term approach to this national problem is required.

As the Federal Government’s awareness campaign states, it’s up to everyone to:
•    Identify whooping cough: educate the community about whooping cough, so we can identify symptoms
•    Protect babies: inform parents that everyone in contact—children, adolescents and adults—needs an up-to-date booster until their baby has at least two doses of the vaccine, with three needed for full protection
•    Prevent the spread: vigilant testing by GPs to diagnose whooping cough as early as possible to stop the spread and treat babies quickly.

You have a duty of care to warn parents and do what you can to protect their children. Please, don’t abandon a program when there is nothing to take its place. You are taking a massive gamble with our babies’ lives.

Whatever the alternative, we believe you still need to promote cocooning no matter who pays for it. At the very least, if you do stop the programs, please make it clear that you recommend all adults get a booster to protect newborns and inform them where they can access it affordably.

Our fear is that by dropping free boosters, the public will think that boosters are not important. This will lead to more infections and more deaths—giving PBAC the numbers to meet its criteria.

This is a senseless and horrific price for families like ours to pay.

– You can sign the petition here.

Yours in Community

Toni and David McCaffery
Alison
Dianne Cherrie and Jason Condon
Andrea Mansell
Sarah and Chris Nolan
Danielle Renee Bellerby
Jay and Roslynd Smith
Jessica
Jessica Murray
Jo
Kate Witherell-Ausburn
Kathy McGrath
Katrina Pate
Lauren Guan
Lauren Hodgetts
Michelle Meacham
Nadia Kellett
Racheal Zappia
Rebecca Weidner-Button
Samantha Reade
Stephanie-anne Adams
Tash Musumeci
Brad Tilyard
Phillip E Baker
Robert
Christopher
Brian

With support from parents internationally

Danny Darche and Katrien Bensch
Sheila Guerin
Claire Davies and Darren Coats
Kathleen Vanden
Aleshya James Garner
Chelsea Charles
Christie Bryant-Benson
Crissie Wright
Felicia
Jacqui Ann Kendrick
Kathryn Riffenburg and Jon Alcaide
Katie Court Van Tornhout
Kim Kern
Linda Bottley Mottram
Lynne Baker
Maureen Heglin-Case
Rebecca Contreras
Robin Bergman
Stacy Player
Stephanie Gee
Tiffany Norquest
Trisha Allen
Zann Starbuck
Ileana Palacios-Prado
Carly Lambert
Francis Collado
Heather Bailey
Kylie
Mariah Ventre Bianchi
Mel Davis