Informed choice and immunisation programmes ppt

women’s healthu p d a t e Women’s Health Update features women’s health news, policy and scientific findings, to enable health care professionals and community-based workers to be at th

women’s health

u p d a t e

Women’s Health Update features women’s health news, policy and scientific findings,

to enable health care professionals and community-based workers to be at the forefront in women’s health.

Women’s Health Update is published

by the Women’s Health Action Trust

Women’s Health Update is produced by Women’s Health Action Trust • Edited by Jo Fitzpatrick

To receive copies of Women’s Health Update, make suggestions about future contents or send items

for publication please contact: Women’s Health Action Trust • PO Box 9947, Newmarket, Auckland, NZ

2nd Floor, 27 Gillies Avenue • Ph (09) 520 5295 • Fax (09) 520 5731 • email: info@womens-health.org.nz

Internet address: http://www.womens-health.org.nz • Women’s Health Update is published with the assistance of the Ministry of Health

Women's Health Action Trust celebrating 20 years 1989-2009

The school-based phase of the HPV (human papillomavirus) immunisation programme that will provide Gardasil vaccine for girls from

12 years old is about to start Given the debate

on the failure of informed consent processes with the MeNZB immunisation programme, and

a troubling start to the national HPV immunisation programme launched in September last year, it is timely to raise concerns about the fate of informed choice and consent in the school-based phase of the programme Christy Parker looks at some of the ethical issues

surrounding mass immunisation programmes targeting children and young people and argues that the principles of informed choice and consent must not be compromised by population health objectives

During the last 50 years mass immunisation programmes have been effective in protecting people against infectious diseases alongside other public health measures However, while successful, these programmes have remained controversial often with fierce debate over both the context and their implementation (Verweij

& Dawson, 2004) There are two major groups

of ethical issues which cause controversy The first relate to the development, introduction, and availability of new vaccines There is much debate about the principles that should

be applied in deciding which programmes are funded, about how these decisions are made, and by whom (Verweij & Dawson, 2004) The role of pharmaceutical companies who stand

to make millions, or even billions, in decisions

I n s i d e

● Menopause, Midlife and Metabolism

● M ¯aori Women and Breastfeeding

● New Women’s Health Action Website

● Resources and online support group for women

continued on page 2

vol 13 no 1 • February 2009

Informed choice and immunisation programmes

Informed choice and consent are not niceties in New Zealand; they are enshrined

in law through the Code of Health and Disability Services Consumers’ Rights The Code of Rights, which became law in 1996 confers a number of rights on all consumers of health and disability services in New Zealand, and arose out of the Cartwright Inquiry with its damning findings about the treatment of women with cervical cancer at National Women’s Hospital, a scandal termed the “Unfortunate Experiment” Rights six and seven of the code define health and disability services consumers’ rights to full information to enable them to make an informed choice and give their informed consent for any proposed health intervention Right six is the right to be fully informed The consumer can expect an explanation of the options available including an assessment of the expected risks, side effects, benefits, and costs of each option Right six also stipulates:

Before making a choice or giving consent, every consumer has the right to the information that a reasonable consumer, in that consumer’s circumstances, needs to make an informed choice or give informed consent.

Right seven outlines the right to make an informed choice and give informed consent

about national vaccination programmes is particularly contentious Broader debates about the safety and efficacy of vaccines also continue

to be very active

The second major group of ethical issues, and the ones which are the focus of this article, concern the implementation of vaccination programmes: the means used to achieve high vaccination uptake, and the information and communication processes involved (Verweij

& Dawson, 2004) When extraordinarily high immunisation targets, aggressive marketing campaigns, and one sided information resources are employed, they risk undermining consumers’ rights to informed choice and informed consent (See Box) There is an inherent tension between these rights, and the objectives of population health which seek the highest uptake of interventions (such

as screening or immunisations) to reduce the incidence of a disease across the whole population The tension is further complicated when an intervention is aimed at children and young people and the right to informed choice and informed consent includes their parents

continued from page 1

International research has explored this

tension and the ways that the communication

and implementation of childhood immunisation

programmes, aimed at maximising uptake, can

undermine consumers’ (or their parents) rights to

make an informed choice Offering practitioners

financial incentives to meet high uptake

targets works to undermine informed consent

processes, especially when practitioners also

believe that it is their “moral responsibility” to

ensure children are immunised Alderson et al

(1997) asked primary health care practitioners

in the United Kingdom about their views on

childhood immunisation and how targets with

financial incentives might affect parent’s choice

They found that ‘official’ targets and guidelines,

as well as one-sided information resources, had

a significant impact on how these practitioners

approached informed choice and informed

consent in vaccination programmes Almost

all of the practitioners which included GPs,

practice nurses and health visitors felt obliged

to carry out government policy even if they felt

this was damaging to their patient relationships

One GP stated:

I feel angry about targets My relationship with

patients is becoming increasingly damaged I

think, increasingly, things like coercive consent

will become a problem; they’ll see me more as

a policeman, not a doctor (Alderson et al, 1997:

96)

Many practitioners also described a special

moral duty to children which superseded the

rights of parents to make an informed choice

It was apparent that policies encouraging high

uptake leant institutional support to these

attitudes The comments of one GP were

particularly concerning:

My duty is to the child, and not to have the

child immunised because of grandmother’s

prejudice is unacceptable as far as I’m

concerned…If a child comes in and I notice the

child hasn’t had them, I sometimes will do them

opportunistically I think targets have improved

rates There’s no doubt that money talks, and

it’s meant a lot of GPs have got themselves

sorted out

The reluctance to provide full information and

facilitate discussion about the risks and benefits

of immunisation for fear that parents would not

make the “right” choice was reported by many

practitioners, leading one practitioner to state

rather revealingly ‘consent is about compliance,

we need to do more work on how to get them

to comply, to take it up’ Parents who chose not

to have their children immunised tended to be

seen as irresponsible and/or irrational

The recent MeNZB immunisation programme

was a worrying local example of the fate of

informed choice and consent when the goal

of childhood immunisation programmes is

to achieve the highest possible uptake and

fast When the $220 million dollar campaign

finished in May last year, parents were shocked

to discover that few of the children immunised

during the campaign remained immune to Meningococcal B Uncertainties about how long immunity would last were not adequately communicated to parents in the rush to achieve high uptake targets, and many parents thought that their children would be immune for life The failure of informed choice and consent processes

is not just a violation of health consumer’s rights

as enshrined in law, it is dangerous Parents, believing their children are immunised against Meningococcal B, are less likely to be alert to signs of this deadly disease

Claims that fear-mongering and bullying tactics were used to intimidate parents into having their children immunised were reported throughout the MeNZB campaign, and many parents reported a lack of reliable and unbiased information to assist their decision making process The approach to informed choice and consent during the school-based phase of the programme was particularly concerning to many parents An October 2007 study published in the New Zealand Medical Journal found that parents had a ‘largely unfulfilled desire for reliable, valid and balanced information about the MeNZB vaccine’ (Watson et al, 2007)

Parents – whether they decided to immunise

or not – frequently described the Ministry of Health media publicity as ‘scare mongering’,

‘controlling people through fear’, ‘fear driven’,

‘not balanced’, and ‘one sided’ Even parents with a more positive view made comments such

as ‘presenting the Government’s received view’

and ‘needing in some way to twist it to force people to immunise’ Those parents with school aged children reported concerns about the graphic nature of information given to children

at school, in most cases without parental consent; the use of child-based incentives; and the short time frame given to parents to sign consent forms, all of which left parents feeling like they were being pressured into giving their consent (Watson et al, 2007)

The roll out of the HPV immunisation programme since September 2008 has also raised concerns that the approach to its implementation undermines health consumers’

ability to make an informed choice about the vaccine The Gardasil vaccine, which targets four types of the human papillomavirus associated with cervical cancer, some vulval and vaginal cancers, and genital warts, is being offered to all women aged 9-26, and is controversial for a number of reasons These include the vaccines’

infancy and the suspicion that it was rushed to the market ahead of competitors for commercial gain with inadequate evidence of its efficacy and safety Once again there are unanswered questions around how long the vaccine will offer immunity HPV vaccination programmes are also solely targeting girls and women when HPV infection is present in boys and men and

is associated with other cancers and genital warts HPV is thus a sexual health issue, not a

women’s health issue and young women should

not have to bear the burden for reducing the incidence of HPV related diseases Further we risk sending young women the message that they alone are responsible for sexual health Gardasil is also one of the most expensive vaccines ever sold and the programme will cost hundreds of millions of dollars- prompting questions about the gains given that women still need regular cervical smears with or without the vaccine The HPV immunisation programme is being introduced in two phases, the first phase introduced in September last year through GPs and primary health care practices for women born in 1990 and 1991, and the second school based phase late in term one of this year for girls aged 12 to 18

Concerns about the implementation and communication of the HPV immunisation programme echo those of the MeNZB campaign and centre around the marketing of the vaccine; the one-sided nature of the information resources available to young women and their parents; and the involvement of the pharmaceutical company- CSL Biotherapies- in delivering the programme The decision to market the HPV vaccine as the “cervical cancer vaccine” is factually incorrect and obstructs consumers’ ability to understand the relationship between HPV, cervical cancer and Gardasil The information resources are also woefully inadequate and fail to communicate uncertainties about how long the vaccine will confer protection, and that 90% of HPV infections are cleared

by the body naturally within two years The ethics of aggressive marketing campaigns selling vaccines as “cool” to young women are questionable- peer pressure should not be used

as a strategy to encourage vaccine uptake The Auckland District Health Boards ‘One ForTheGirls’ “information” website about the HPV programme is an example of the emphasis

on marketing over clear and honest evidence-based information to assist decision making CSL’s biotherapies “remind me” compliance programme alerts young women by email or text when their follow up vaccines are due It

is unethical for pharmaceutical companies with major financial interests in vaccine uptake to have this role, and the resulting direct contact with young health consumers

Ethical issues aside, safety is a major issue

if aggressive one-sided marketing campaigns and poor information resources reduce young women’s ability to make a meaningful informed choice about Gardasil Young women must understand that they will still need to have regular cervical smears because Gardasil does not offer “lifetime protection from cervical cancer” (as parents believed with meningococcal B) Gardasil does not protect against all cancer causing types of HPV and it is unknown how long immunity will last- experience tells us the duration of immunity is likely to be shorter than first thought If young women do not understand the limitations of Gardasil there is a major risk

2 • Women’s Health Update • vol 13 no 1 • February 2009

Menopause, Midlife and Metabolism

Women’s Health Update • vol 13 no 1 • February 2009• 3

The 12th Australasian Menopause Society

(AMS) conference held in Melbourne in October

last year explored the issues of midlife and the

many changes that women experience at this

time Jo Fitzpatrick gives us a brief overview

Women’s Health Action doesn’t attend AMS

conference every year but this one promised a

wider look at common and uncommon midlife

problems not often discussed It focused

on the impact and emergence of diseases

such as diabetes, depression, heart disease,

osteoporosis, metabolic disorder, and lupus

at the time of menopause; and included a full

session on vulval disorders

Interesting points from the sessions on obesity

and metabolic syndrome include:

Most weight gain occurs pre and peri-

menopausally rather than at the time of

menopause and is particularly marked around

the midriff where it is also most dangerous in

terms of future health implications

Low calorie diets, and particularly

Mediterranean diets, are useful for weight

control at this time and they are most useful

when combined with exercise

Exercise needs to be varied and include weight bearing and aerobic exercise and, to be effective, should last for at least an hour a day

Lifestyle changes, including fitness, change

of food habits and behaviours, remain the bedrock of all medical strategies to manage obesity These changes include self-monitoring with the doctor and the woman negotiating agreed changes

Drugs for other conditions may increase weight and there are few effective drugs for the management of obesity available

Surgery - lap banding – results in major positive changes but needs to be permanent

as small changes ‘easing-off’ the lap band have resulted in rapid and dramatic weight gain

Lifestyle related metabolic diseases are now a primary cause of chronic disease in Australian women and they are underpinned by a lack of physical activity and excess food intake They include obesity; polycystic ovarian syndrome;

diabetes (including gestational and pre-diabetes); and cardiovascular disease

The vulval disorders section was extremely useful in throwing light on these troubling and

troublesome midlife problems It also confirmed that this is a complex area which is not well understood and may be difficult to treat An in-depth look at hot flushes identified 620 drugs and 337 known drug interactions which were known to cause ‘hot flushes’ and outlined ways of determining whether hot flushes were menopausal or indicative of other more serious conditions Many of the papers were useful and fascinating which made this conference worth attending

This conference as always, was heavily sponsored by drug companies and they were well in evidence – as sponsors and advertisers

in the conference materials; as session sponsors and as principal providers of food – served surrounded by their stands on a mezzanine floor

References:

http://en.wikipedia.org/wiki/Mediterranean_ diet

h t t p : / / w w w m a y o c l i n i c c o m / h e a l t h / mediterranean-diet/CL00011

A recently launched report brings to

completion qualitative research on factors

that influence breastfeeding for M ¯aori women:

the decision to breastfeed; the choice and

quality of breastfeeding advice; and the factors

influencing breastfeeding – both positively and

negatively Sixty women and their whanau were

interviewed and the results shine a useful light

on M ¯aori breastfeeding today The depth of

analysis has enabled the researchers to make

useful recommendations

Particularly useful is a new model for

understanding how M ¯aori women are diverted from breastfeeding Five influencers were indentified : breakdown in the breastfeeding norm within the whanau, early interruptions to or difficulties establishing breastfeeding, negative or insufficient maternity support for breastfeeding, lack of knowledge about how breastfeeding changes over time and returning to work

The recommendation in this report, for the promotion of breastfeeding to M ¯aori, would be wisely taken heed of “… focus on re-establishing breastfeeding as a tikanga (right cultural practice)

rather than a perceived lifestyle choice.” The published report of Marewa Glover, Haarangi Manaena-Biddle, John Waldon and Chris Cunningham was launched on Tuesday the 3rd of February at the University of Auckland For a copy of the full report send an $18 cheque made out to: ‘Auckland Uniservices Ltd’ to Marewa Glover, Social & Community Health, The University of Auckland, Private Bag 92019, Auckland Mail Centre 1142

Shining a light: te whaangai uu – te reo o te aratika

M¯aori Women and Breastfeeding

that they may not participate in New Zealand’s

excellent cervical screening programme Given

the uncertainties about the duration of immunity,

there is a real risk that by the time many of the

very young women who have the vaccine are

sexually active they may no longer be protected

from any of the strains of HPV In the worst case

scenario, if these young women do not have

regular smears believing that they are protected

from cervical cancer we could actually see an

increase in the incidence of cervical cancer

Good information when it comes to health

choices is a serious business

As we prepare to launch the HPV programme

in our schools, it is timely that we look seriously

at the level of education and the information

resources we provide to the huge numbers

of young women we plan to vaccinate in the

course of these prgrammes Consumers must

have easy access to full information and the

opportunity to make an informed choice about vaccines, especially when a vaccine is controversial Consumers’ rights to do so are fundamental to health service delivery in this country Verweij and Dawson (2004) argue that analysis and discussion of the ethical issues should be part of any justification of mass immunisation programmes, perhaps especially for those targeting children and young people

Alderson et al (1997) urge policy makers to take parents’ concerns and questions about vaccination seriously and to include them in these discussions, acknowledging them as the experts in caring for their children We must remember that parents are the first to see the impact of vaccines on their children’s health

Alderson et al (1997) also urge the development

of detailed information booklets with clear summaries of research reviews, statistics and suggested questions to discuss rather than

relying on marketing resources that appeal

to parent’s guilt and fear, or to the culture of

“cool”

Finally, serious questions need to be asked about how we measure ‘success’ in immunisation programmes It’s too easy and extremely dangerous to set high targets for uptake and to see this as ‘success’ or ‘good practice’ by health professionals Best practice should be measured by the number of people who have been given enough information, time

to discuss this information, and who make a meaningful informed choice, whether this be

to accept or decline the intervention Despite laudable objectives, we shouldn’t be bullied into accepting anything less

The full article, including references, can

be accessed from our website www.womens-health.org.nz

women’s health

u p d a t e

Women’s Health Update features women’s health news, policy and scientific findings,

to enable health care professionals and community-based workers to be at the forefront in women’s health.

Women’s Health Update is published

by the Women’s Health Action Trust

Women’s Health Update is produced by Women’s Health Action Trust • Edited by Jo Fitzpatrick

To receive copies of Women’s Health Update, make suggestions about future contents or send items

for publication please contact: Women’s Health Action Trust • PO Box 9947, Newmarket, Auckland, NZ

2nd Floor, 27 Gillies Avenue • Ph (09) 520 5295 • Fax (09) 520 5731 • email: info@womens-health.org.nz

Internet address: http://www.womens-health.org.nz • Women’s Health Update is published with the assistance of the Ministry of Health

Women's Health Action Trust celebrating 20 years 1989-2009

Noticeboard

● Well Child Week “listening

and talking”

2nd - 8th March

For further information please go to www.wellchild.org.nz

● 2nd hdC MediCo-legal ConferenCe

Wednesday 4 March 2009

Wellington For more information please contact Julia Phillips on 04

494 7900

● UnifeM, international

WoMen’s day Breakfast

8th March For more information please contact: Liz Brown, Breakfast

Co-coordinator

Ph: 04 977 8783 or E-mail: liz.brown@paradise.net.nz

● ViCtiM sUpport Week

11th - 18th March

For events please see www.victimsupport.org.nz

● pUBliC leCtUres

“Who Cares? Narratives of People Who are Dying and

Their Families”

16th March For more information on these lectures please go to http://

www.compassioninhealthcare.org

● neW Zealand laCtation

ConsUltants assoCiation Walking toUr 2009

Auckland - Monday 23 March The Conference Centre, AUT Tech Park Wellington - Wednesday 25 March Terrace Conference Centre Christchurch - Friday 27 March Russley Golf Course For more information please go to: http://www.workz4u.

co.nz/LinkClick.aspx?fileticket=72RH6F2lIGI%3d&tabi d=3925

● 15th international CritiCal and feMinist perspeCtiVes in health

& soCial jUstiCe ConferenCe

16 – 19 April 2009 Auckland Conference themes are:

Health care system and practice interplay, Social justice and challenges for society

Cultural challenges within health care, Power and practice challenges,

Indigenous peoples and health care For more information or to register go to contact Debbie Payne at debbie.payne@aut.ac.nz

● Working With Child sexUal aBUse

Strengthening and Informing Practice 14th and 15th of May For more information please see http://www.safenz.org/

Downloads/SymposiumDetails2009.pdf

Our newly developed Women’s Health Action

website was launched at our Women’s Suffrage

Breakfast on the 19th September The new

website contains over 300 pages of up-to-date

information and research on women’s health

issues, policy, service developments and events

It has been built on a database structured

template which will allow our staff members

to add pages to the site ensuring a site that is

regularly updated It is an excellent resource

for health consumers; health care providers;

women’s and community health organisations;

and health policy makers and researchers alike

Our submissions, newsletters and papers on

a wide range of women’s and consumer health issues can be down-loaded directly from the site

as they become available We welcome comment and feedback on these Also available on the site are a range of gender-based analysis tools for policy development; Women’s Health Action press releases; quick reference hot topics;

upcoming events related to women’s health and breastfeeding; and links to other women’s organisations in New Zealand and around the world

Along with hundreds of pages of current

women’s health research and information, the site includes a facility for making queries from the site WHA has a 24 hour Monday to Friday turnaround policy on enquiries Another useful site feature is the down-loadable order form for our women’s health resources and we hope to have an electronic order form available in the near future

We welcome any feedback or comments

on the new site and how it can be improved further

The website address is www.womens-health

org.nz

New Women’s Health Action Website Launched

Women who are battling with mental health

or drug and alcohol problems as a result of

domestic violence now have a safe place to

go for on-line support There are a number of

‘domestic violence’ websites about but this is the

first specifically for people who feel that domestic

violence has driven them mad

www.hedrovememad.com is for people to

share experiences, discuss issues of concern,

ask and answer questions, provide information

on what helps and what doesn’t, advertise local and national events and share information The website provides contact with people who not only understand, but who have been in similar situations and will provide support usually found

in face-to-face and group situations

The site is secure; pseudonyms are used and there is clear information on how to use the site

so that abusers are unable to trace and track usage

For health professionals and support services working with these people, a CD and teaching package is also available

Flyers on the website for distribution and display are available from debbie.neil@paradise

net.nz

Debbie also has more information on the DVD and teaching package

Resources and online support group for women