Is the NHS collection of patient identifiable data of women with FGM unethical and a breach of confidentiality?

16/08/2015 § Leave a comment

Female genital mutilation (FGM) has been illegal in the UK since 1985, and taking a child abroad to undergo FGM, as legislated in the 2003 Female Genital Mutilation Act and 2015 Serious Crime Act is also illegal and is recognised as a form of child abuse. Until 2014, however, no one had been prosecuted  for FGM and to date, no one has been convicted of this crime.

In response to calls for ‘something to be done’ to address this failing, the UK government has taken a number of steps. They include encouraging the Crown Prosecution Service to scour the landscape for possible perpetrators, sending the Police to airports to hand out leaflets to suspicious travellers and tell them that FGM is illegal, and encouraging Border Agency staff to be on the lookout for victims who might have undergone the procedure abroad, particularly during the so-called ‘cutting season’ (summer holidays).

New regulations and guidance have also been issued to professionals. Among them has been a requirement to gather data on the prevalence of FGM among girls and women living in the UK. Contrary to long-established practice in epidemiological study, however, the data include a long list of identifying information on the women, including their names and NHS numbers, and the governmental Health and Social Care Information Centre are being sent this data, quarterly, since April 2015.

Epidemiology, according to a BMJ handbook, is “the study of how often diseases occur in different groups of people and why. Epidemiological information is used to plan and evaluate strategies to prevent illness and as a guide to the management of patients in whom disease has already developed.” Epidemiological study requires the identification of the population at risk. Not everyone with a disease or who is at risk is studied, however; rather, a representative, sample population is identified for study. Individuals being studied remain anonymous because the aim is not to study or treat individuals, but to study them as a population group, through random selection among those at risk. There is almost never an attempt to find everyone who may be at risk or affected, but only a representative sample. On the basis of this information, health professionals can be trained in addressing the disease concerned and services directed at those who need them.

FGM is not a disease, of course, but a harmful traditional practice, However, FGM is not a new condition nor one about which little is known. For women with problems arising from FGM, a number of NHS specialist centres have existed in Britain for many years and provide care for women with these problems. They are staffed by specialist clinicians, mainly midwives and doctors.

Still, the study of FGM epidemiologically is valid in that the findings can be used to ensure that the services women may need can be planned and made accessible to them. It has long been recognised that some of the women who migrated to the UK from FGM-practising countries had experienced FGM as children in their country of origin. Bindel estimated that the numbers could be as high as 170,000. A provisional estimate of FGM prevalence in England and Wales, published by City University and Equality Now in 2014, however, suggested this figure was 137,000 women and girls. This is a not inconsiderable difference. (Note: Neither the Bindel nor the City University data were accessible on the web at this writing.)

In the latter estimate, prevalence data were “derived from reports of household interview surveys in 2011 in the countries in which FGM is practised and extrapolated to the number of women living here who came from those countries of origin. Thus, the figure is based on two sets of estimates. Yet another study published by the UN Refugee Agency looked at the number of initial applications for asylum from women from FGM-practising countries, to Europe, covering the UK between 2009 and 2011. It found that an average of 2,350 females per year had applied for asylum in the UK. This does not mean all of them were granted asylum or had entered the country, nor that they even had FGM. So the value of these numbers is dubious.

What is certain is that none of these estimates were derived from a bona fide epidemiological study and should never have been accepted and treated by officials, the media or campaigners as if they were. But they were, and they continue to be cited by those pressurising the government to ‘do something’. In reality, there are no accurate data on the number of women in this country who have undergone FGM. Nor is there evidence that FGM is being carried out in the UK on children. Although it is presumed that some British families take their girl children back to where their relatives came from or elsewhere for FGM, the numbers involved are also unknown. These are all good reasons for why accurate epidemiological data should be collected. So, how is the government addressing this need?

Starting in 2014, the Department of Health (DH) mandated that the Health & Social Care Information Centre (HSCIC) collect monthly prevalence data from NHS health professionals working in acute hospital settings, of women who had previously been identified and were being treated for FGM-related or non-FGM-related conditions, as well as newly identified women. This continued to March 2015.

Then in April 2015, prevalence data collection was replaced by an FGM enhanced dataset. Clinicians in England, working in Acute Trusts, Mental Health Trusts and GP Practices now have to record demographic and other data (including patient identifiable data) when a patient with FGM is identified during a consultation for health care of any kind, including the type of FGM she has undergone. The data has to be entered every time the woman or girl seeks care or gives birth to a baby girl (because the baby may be at risk of being subjected to FGM), and every time FGM is identified (by a clinician or self-reported), not just the first time. The data must be sent quarterly to the HSCIC. But this is not the way to do an epidemiological prevalence study. How is it different?

First, its goal is to record data on every woman and girl found to have had FGM. This is neither necessary or cost-effective since the point of epidemiological studies is to obtain representative data on the “group”, not the individuals.

The sort of ‘blanket’ data collection demanded by the DH was not even carried out to identify people living with HIV, for example, even after the extent of the epidemic became clear. Although it was certainly proposed, it caused a great deal of debate and controversy ‒ and was rejected. People living with HIV fought against named data collection as a violation of privacy and medical confidentiality, and as a human rights issue ‒ not only because of the stigma related to being identified as having HIV or AIDS, but also because, in those early days, there was no benefit for patients as no treatment had been developed.

Are not the rights of patients with FGM also being violated when they are identified and recorded as having had FGM? Some activists who have undergone FGM have expressed feelings of being stigmatised and fear of speaking out about it. But unlike with HIV, this fear is because their families are also implicated and might be exposed. Perhaps they do not want themselves and their families to be investigated by the justice system? Or they may be afraid of the racism and condemnation resulting from such exposure?

Secondly, the HSCIC regulations now require that a host of information be recorded, with or without the patient’s permission. The mandatory and required (i.e. if appropriate) non-pregnancy-related data that must be collected include: the woman’s full name, birth date, post code, NHS number, country of birth, country of origin, GP practice, care contact date, details of referring organisation, details of treatment site, existence and type of FGM, details of de-infibulation, pregnancy status indicator, FGM family history, number of daughters under 18, that the woman was advised on the health implications of FGM and on the illegalities of FGM, daughter/s born at this attendance, woman’s age at FGM and country. Optional information includes age and country of origin of the father of any the woman’s daughters aged under 18.

Ironically, despite all of the claims in these regulations that the main purposes of interviewing women who have had FGM is to record information that will be used to help them, there are no questions on the form asking health professionals to confirm that they have given women information on where to find clinical, psychological or social support for FGM if it is needed.

I can understand that recording a woman’s NHS number might be considered necessary to avoid the possibility that, with totally anonymised data, a woman with FGM who attends for health care in more than one place might well be counted more than once. This is a valid concern, considering the flaws in the initial regulations. However, in my opinion, there are serious new concerns here no matter which way one looks at it. The value and purpose of the extent of the information health professionals are now required to record is, epidemiologically speaking, highly questionable, despite HSCIC reassurance that no patient identifiable data (PID) will ever be published. This is because the woman’s personal data may be handed over to the police, social care authorities or the courts if she has girl children who are deemed, during the course of data collection or afterwards, to be at risk of FGM.

This is because FGM is not just a health condition, it is a crime. Consequently, only one of the purposes of data collection by the HSCIC is to determine prevalence and to make information and treatment available to women and girls as victims. Another is to share the information with other governmental authorities, so that they can investigate whether these same women’s daughters are at risk of becoming the next generation’s victims, thereby turning the adult victim into a potential perpetrator or accessory to the same crime she herself was the victim of.

On top of this, even if she does not give her consent to do so, the victim is required to provide health professionals information about herself. On page 48 (of 53 pages), the regulations say: “It is not intended that patient-identifiable data will be shared with other parties. Such activity would require explicit patient consent…. It is intended, however, that the FGM information collected and disseminated using the Clinical Audit Platform will support the publication of patient-anonymised Official Statistics.”

Yet the next paragraph on the same page says: “As the FGM Enhanced Dataset will be underpinned as a result of Department of Health directions, this will require no explicit patient consent to be sought in order to collect this information and subsequently share this with HSCIC. However, each patient where FGM information has been identified by a healthcare organisation, must inform each woman or girl as to how and what will happen to the information being recorded, and further to this, where an objection to this is made each organisation must ensure it understands the fair processing procedures outlining where a woman can contact to make an objection to this information being recorded and sent to the HSCIC.” A long set of instructions on how to handle this follows.

Moreover, it also says that the woman can only register a complaint after the fact, that is, after the data have been recorded, but her complaint will not stop her data being retained and used by the HSCIC. It seems that the Health and Social Care Act 2012 allows health professionals to violate women’s informed consent in this way. This is certainly a violation of privacy and confidentiality that must be challenged.

Pregnant women generally come under a lot of scrutiny. Pregnant women with FGM come under particular scrutiny. The HSCIC requirements say that all existing maternity discharge information sent to GPs and health visitors MUST [their emphasis] also include all relevant FGM information, where appropriate, when FGM or family history of FGM have been identified prior to, during or after the birth of a baby. This is another instance in which personal data will be shared.

The pregnancy-related FGM information to be specifically recorded includes: FGM type, confirmation that a de-infibulation procedure took place to facilitate the delivery of a birth, where applicable, and confirmation that no external female genitalia abnormalities were found in girl babies at birth following existing neonatal examinations, confirmation if an interpreter was required during the episode of care, and confirmation that the newborn baby’s healthcare record has been updated to reflect that FGM had been identified in the mother. Additionally, as part of the initial antenatal assessment, every woman MUST [their emphasis] be asked if they have undergone FGM. Where a Health Visitor identifies that there are sisters of a girl with FGM, it is the responsibility of the Health Visitor to inform the GP (pages 12-13). And this is not even the half of it.

The regulations say three times, (pages 8, 11 and 21), that clinical examinations of the woman’s genitalia need only be undertaken “as part of a usual, routine or requested provision of care – there is no intention for every clinician to automatically undertake a clinical examination in order to record the type of FGM”. Thus, there is a presumption that women not requiring examination of their genitalia will “self-report” when asked if they have had FGM. But will all clinicians note this caveat or will we begin to hear stories of women’s genitals being examined no matter what they have attended for?

From the point of view of the woman sitting in front of the doctor or midwife, one might easily imagine that any need for help she may feel would be compromised by the fear ‒ especially if she is pregnant, has girl children under age 18 or has just delivered a girl child ‒ of being investigated, prosecuted and criminalised by the criminal justice system, along with other family members. Will she give all the information asked of her? Will she come back for another appointment?

And what about the health professionals who have to ask women these questions and record their answers in the relevant database? There is an ethical requirement on health professionals not to allow the violation of patient privacy and not to break medical confidentiality, particularly if it is against the woman’s expressed wishes. Yet the HSCIC requirements require just that from health professionals, who must submit the data quarterly and in annual reports.

What if clinicians refuse to collect some or all of the data? The regulations do not say what will happen if they fail to return this information fully and in the required detail, except that “the submission will be rejected”. Will they be required to get the woman back in to obtain more details? Will they be disciplined, as they would if they do not report a suspicion or actual case of FGM in an under-18-year-old? Clinicians already worry about the consequences of not identifying ‒ or mis-managing ‒ women with FGM, and now they also fear prosecution, after what one of their colleagues suffered, in spite of being acquitted.

This is not the first time the Government has attempted to ‘share’ identifiable information from clinical records without patients’ permission. In 2013, they announced they were going to extract ‘identifiable data’ from GP records to be used ‘routinely’ for research by the health service and private entities (which might have included pharmaceutical companies), unless patients asked to opt out. In this instance, there was a public furore and after 700,000 people had opted out, the scheme was ‘indefinitely delayed’. This year, they attempted to do so again on the grounds that they needed to intervene in regard to the care of ‘high cost individuals’.

This time, however, women with FGM are not being given any choices in the matter. It is highly unlikely that they will refuse to provide their personal data in large numbers, as people with HIV did previously, as they do not have the social or political clout, or the public support, to challenge the Government or their health care providers.

Health professionals, on the other hand, do have that power, and just as GPs supported the 700,000 patients’ refusal to allow their data to be shared for unspecified research, so health professionals should stand up in this instance, and refuse to populate the HSCIC database with identifying details about the women involved.

At the end of February 2015, the government reported that 2,603 women and girls who had attended the NHS in the previous six months for health care of some kind had been recorded as having had FGM. Of these, only 44 were under the age of 18. Is it possible to extrapolate from these figures what the estimated prevalence might actually be? Probably it will take a much longer time to accomplish that, depending on how long it takes before the whole population of women and girls with FGM has attended for health care of some kind. Will prosecutions arise from the analysis of those data? Meanwhile, no proper epidemiological study has yet been considered, let alone launched.

Conclusion

I continue to believe, as I did at the FGM trial in January 2015, that this issue is being used politically by people in power, to gain credibility as champions of women only because they can present them as victims of their own culture. Furthermore, when, in reporting the government’s figures, the Guardian quotes Equality Now as saying “this is only the tip of the iceberg”, we can be pretty certain that it is the shock-horror value of FGM that is holding sway here, not concern for the women who have experienced it.

Although the situation is complicated by the criminal aspects of the issues involved, the government clearly needs a rethink ‒ epidemiological data, data for the provision of health care, and information leading to criminal investigation and prosecution should not be conflated in this way.

This blog was written for and appears also on Shifting Sands.

Support for universal vaccination of all boys aged 12-13 against human papillomavirus

11/08/2015 § Leave a comment

I wrote this blog as RHM Editor with Lisa Hallgarten, RHM Online Editor. It was published on the RHM Blog on 18 December 2014.

This paper, sent to the UK Joint Committee on Vaccination and Immunisation (JCVI), is in support of universal vaccination of all boys aged 12-13 against human papillomavirus (HPV) as a cause of genital warts and HPV-linked cancers that affect men regardless of their sexual orientation

Background

The UK has had a universal policy of vaccinating all girls aged 12-13 with a bivalent vaccine since 2008, and with the quadrivalent vaccine Gardasil since 2012 which, in addition to protection against HPV types 16 and 18, offers protection against two strains of HPV that are responsible for 90% of genital warts, types 6 and 11. According to the Royal Society for Public Health’s September 2014 newsletter, Gardasil also protects against most anal cancers, and while there is currently no data on the efficacy of the vaccine to prevent cancers of the penis, most HPV-related cancers of the penis are also caused by the HPV types prevented by Gardasil. [1]

From September 2014 the vaccine schedule was changed from three to two doses for 12-13 year-old girls in the UK.  Costs will fall concomitantly, freeing up resources. Another vaccine, which has just completed clinical trials, has been found to offer even further protection against the four original HPV types in Gardasil (6, 11, 16, 18), plus five additional variants linked to cervical and vaginal cancers. If it is approved, costs will be altered.

Overall uptake by girls for the vaccination programme has been reported as good. [1] Data for 2012-13 suggest that around 86% of girls had received all three doses of the vaccine in England, and 82% in Scotland. Prevalence of HPV types 16 & 18 in girls has significantly fallen since the introduction of the programme. However, some groups have shown disproportionally low uptake. Research suggests that there is lower knowledge of HPV and lower acceptability of the HPV vaccine in non-white ethnic groups, which may also be linked to religion. High levels of deprivation have also been linked to low HPV uptake. Other research suggests that poor school attenders or those not in school at all, for example those from travelling communities, are at risk of missing vaccination, particularly where schools do not have systems in place to stop girls falling through the net. [1]

Another issue with uptake appears to be the setting in which vaccination is offered. School-led vaccination programmes appear to be more successful than those offered through GP surgeries. Health services in Cornwall, where uptake has been particularly poor, are now moving their vaccination programme into the school setting. [1]

All of this information, before even looking at HPV in men, has implications for extending protection to boys and men. First and most immediately, it shows that opting for a more limited policy ‒ i.e. choosing in 2008 the bivalent vaccine over the quadrivalent one, presumably on grounds of cost, in spite of evidence supporting the wider protection offered by the quadrivalent vaccine[*] ‒ can end up causing a long delay in increasing the level of public health protection available. Four years were lost in this instance, and it took action such as an online survey of members of the British Association for Sexual Health and HIV to convince the government to change its policy. That survey collected responses from 407 doctors and 113 nurses and other health staff in January-February 2011 regarding the two types of vaccines. 93% of respondents said they would advise patients to pay privately for the quadrivalent vaccine, rather than accept the government-funded bivalent vaccine. Of those surveyed who had daughters in the school vaccination programme, 61% had actually paid themselves for their daughters to be vaccinated with the quadrivalent vaccine, and some had given their daughters the quadrivalent vaccine after they had had the bivalent one. [2]

Secondly, gender-specific immunisation programmes have been demonstrably less effective historically than gender-neutral immunisation programmes. This was exemplified by the UK’s rubella immunisation programme, which began in 1970. An initial decline in the incidence of rubella was followed by a resurgence of the disease in young men and pregnant women, who had not been vaccinated. Yet it was only in 1995 that the programme was modified to include boys as well as girls, a delay of 25 years. [3]

The evidence from Denmark (where the national HPV vaccination programme is for girls only) on the impact of HPV vaccination on the incidence of genital warts shows that incidence has fallen in women but not in men. The authors believe this is almost certainly because men are having sex with unvaccinated women from Denmark and/or other countries. [4] Or they may be having sex with other men, or both.

Thirdly, since GP- and other non-school venues for vaccination are leading to lower uptake rates than school-based programmes, and the uptake among some girls is better than among others, policy on vaccinating boys needs to take both these limitations into account. Focusing only on boys over 16 years old means school-based programmes have far less chance of reaching boys from a young age. Secondly, focusing only on men who have sex with men (MSM) aged 16-40 raises issues of how to reach them effectively as a “group” and whether focusing only on MSM who attend a GUM clinic will achieve too little, too late as regards near-universal protection.

Given that there are many communities where coverage rates among girls are much lower, vaccinating boys would help to protect unprotected girls/women. Boys/men would also be protected from acquiring HPV infection from non-vaccinated girls/women both from the UK and from other countries, and as well as from non-vaccinated boys/men.

Perhaps most importantly from the point of view of sexual health information, particularly addressed to children under 16 and young men and women in school, excluding boys sends absolutely the wrong message ‒ that girls and women alone are responsible for sexually transmitted infections and sexual health.

What is known about the effects of HPV and the HPV vaccine in boys and men

HPV is the cause of nearly all cervical cancer cases and also causes cancer of the vagina, vulva, anus, penis and the head and neck. It is estimated to be the causal agent in 5% of all human cancers and is heavily implicated in the recent rapid rise in anal and head and neck cancers. HPV is also the cause of genital warts, the commonest sexually transmitted viral disease. [5] These diseases affect males as well as females; indeed, it has been estimated that in the UK more than 2,000 cases of cancer in men are caused each year by HPV as are some 48,000 cases of genital warts. [6]

The risk of acquiring HPV infection is linked primarily to sexual behaviour, including having more than one lifetime sexual partner. No one would ever consider treating only women for sexually transmitted infections (STIs) when they are also transmitted by and to men. Surely the same holds true with vaccination against HPV. The National Survey of Sexual Attitudes and Lifestyles 2000 found that 34.6% of men in Britain aged 16–44 had had ten or more lifetime sexual partners compared with 19.4% of women. British men are therefore at even greater risk of being exposed to, contracting and transmitting HPV infection than women. Each man who is vaccinated would therefore reduce the infection risk for more than one woman. [7]

HIV infection is strongly associated with increased persistence of HPV infection and the re-activation of latent HPV infection. While much of the research on the increased risk of anal and other HPV-related cancers in men has been in MSM, due to the increased risk of HIV in that population, the incidence of anal carcinomas and anal intraepithelial neoplasia is currently rising in the UK and the USA among both homosexual men, and heterosexual men and women. Number of partners is the issue here, not sexual orientation.

A study recruited 1,159 men aged 18–70 years residing in Brazil, Mexico and the USA who were HIV negative and reported no history of cancer; they were recruited from the general population, universities and health care facilities. The incidence of a new genital HPV infection among them was 38.4 per 1,000 person-months. Oncogenic HPV infection was significantly associated with having a high number of lifetime female sexual partners, and a high number of male anal sexual partners. [8] Thus, the problem of HPV, including oncogenic HPV, is an issue for men who have sex with women too. The data seem to suggest that there are high infection rates and low disease rates in men, while in women there are low infection and high disease rates. [9]

The rapid increase in the incidence of HPV-related head and neck cancers over the past 20 years is also an issue for all men. [10]

A large, national cohort study of Danish men and women examined national patient register data for long-term health outcomes, and specifically the risk of cancer in people with genital warts. The study was among 16,155 men and 32,933 women who had been diagnosed with genital warts from 1978 to 2008. These findings were compared to the general population cancer registry for the relative risk of specific cancers/cancer sites. The total number of cancers observed in the study population was 2,362, compared to an estimated 1,807 cancers in the general population. Overall, patients with genital warts were 30% more likely to develop a cancer compared to those without genital warts. A diagnosis of genital warts was strongly related to anal, vulvar, vaginal, cervical, penile, and head and neck cancer, including sub-sites of head and neck cancer with confirmed HPV association. The risks remained elevated for more than ten years following a genital warts diagnosis. In addition, there were moderately increased relative risk estimates for non-melanoma skin cancer, smoking-related cancers, and Hodgkin’s and non-Hodgkin’s lymphoma. Many of these cancers were also associated with high-risk strains of HPV. [11]

Thus, the risks from HPV for men as well as women are incontestable.

Data on age at vaccination

A systematic review of data in 64 studies, which reported age-specific HPV prevalence, among more than 14,800 men in 23 countries, generally limited to men >18 years old, found that HPV prevalence was high among the sexually active men in all regions but with considerable variation, depending on age, country and region, ranging from 1% to 84% among low-risk men and from 2% to 93% among high-risk men. Peak HPV prevalence spanned a wide range of ages and, compared with that in women, seemed to peak at slightly older ages and remained constant or slightly decreased with increasing age, suggesting longer-term persistence of high-risk HPV infection in men or a higher rate of re-infection. [12]

In every year that passes, over 400,000 boys miss out on the opportunity to be protected against a virus that causes 5% of all cancers.

Immunity against HPV is greater if the vaccine is administered before age 16. The US Centers for Disease Control and Prevention say:

“Data on immunogenicity in males are available from the phase III trial conducted among males aged 16 through 26 years and from bridging immunogenicity studies conducted among males aged 9 through 15 years. Seroconversion was high for all four HPV vaccine types and post-vaccination antibody titers were significantly higher in males aged 9 through 15 years compared with males aged 16 through 26 years.” [13]

MSM are at risk of HPV infection immediately after sexual debut. A study of young MSM in Australia found that early and high per partner transmission of HPV occurred between men soon after their first sexual experiences. It therefore recommended that HPV vaccination should commence early for maximal prevention of HPV among MSM. [14] [15]

Why vaccinating only MSM is not good enough

The reason the term “men who have sex with men” was coined was because many MSM may not identify as “homosexual” or “bisexual” and because they may have sex with girls/women and boys/men over the years. We repeat ‒ because it is the sexual activity that puts them at risk, services need to focus on attracting the people whose sexual activities put them at risk. Moreover, expecting boys and young men (who may not be sexually active yet or sure of their sexual identity) to have to identify whether they have had or will have sex with other boys/men presents both practical and ethical difficulties.

How would policymakers propose to find boys who say they are, or might in the future be MSM, in order to single them out from other boys in order to vaccinate them? What if boys do not identify themselves as MSM publicly, or even in their own minds, given the stigma that still exists? Would a leaflet be enough to bring them in to be immunised in herd-protective numbers? Would talking to their parents, to whom they may have said nothing about their sexuality?

UK data suggest that GUM clinics will not see young MSM before they become infected with HPV. [16] The median age of MSM at first attendance at a Southampton GUM clinic was 32; thus, most MSM would have had multiple sexual partners with high risk of HPV acquisition before they had attended any clinic. Also, many gay and bisexual men do not use GUM clinics. The 2011 Stonewall Gay and Bisexual Men’s Health Survey, with 6,861 respondents, found that one in four had never been tested for any sexually transmitted infection and 44% had never discussed STIs with a health care professional. One in ten had had sex with women as well as with men in the previous five years. [17]

Given the data summarised above, GUM clinics would therefore not be an effective place to vaccinate sufficient numbers of still uninfected MSM. In fact, the evidence suggests that vaccinating MSM aged 16-25 and those who attend GUM clinics is not the best way to protect even the MSM population as a whole, let alone their sexual partners.

The issue of discrimination under the Equality Act 2010

Lastly, there is the question of discrimination under the Equality Act 2010, which lists the following as some of the relevant characteristics protected in law against discrimination: age, sex, and sexual orientation. [18] Given the substantial evidence of the protective effect of HPV vaccination for all boys and men as well as all girls and women, the failure to ensure that HPV vaccination policy is aimed at universal protection could be construed as discriminatory under the Equality Act 2010, and a case could be taken against the government for withholding the vaccine from boys who identify as MSM aged 12-15 and all boys and men who identify as heterosexual.

We believe the JCVI recommendation is discriminatory under the Equality Act 2010. We also think it is not the best policy from a public health perspective either. We question why further information is required before making a recommendation for a universal vaccination programme.

Growing support for vaccination of all boys against HPV

The US Advisory Committee on Immunization Practices of the US Centers for Disease Control & Prevention has recommended that adolescent boys and young men aged 11–21 should be vaccinated against HPV, and that all gay and bisexual men and HIV-positive men aged 26 and under should be vaccinated. [19]

A number of countries, including Australia, Austria and some parts of Canada, have already extended the vaccine to boys as well.

An editorial introducing a group of articles about HPV in the Journal of Adolescent Health in 2010 argued that the most acceptable way to achieve high uptake of HPV vaccine was to offer voluntary school-based vaccination, supported by effective consent processes, training, and best practice guidelines for those providing the vaccination, and education for parents, adolescents, and teachers. School delivery programmes, it argued, were also the most feasible for vaccinating both boys and girls, with new data suggesting that older adolescent boys’ health care practices were exceptionally low. [20]

Conclusions and recommendation

In conclusion, we believe the case for universal vaccination of all adolescents aged 12-13 is strong. In September 2014, in a letter to the BMJ, the All-Party Parliamentary Group on Cancer called for vaccination of all boys in the UK. [21] This approach is supported by the 35 organisations that make up HPV Action, of which we are one. Cancer Research UK also believes that “vaccinating boys would be beneficial for public health”.

HPV Action estimates that the additional cost of extending the HPV vaccination programme to boys in the UK would be in the region of £20–22 million a year. This relatively small cost has to be set against the economic impact of HPV-related disease. The cost of treating genital warts in England alone is estimated to be over £52 million a year.

Gardasil, the quadrivalent vaccine, is already licensed in the UK for use in boys aged 9–15.

We therefore call on the JCVI to adopt and put forward to the UK government the following recommendation: that the most effective way to eliminate HPV and HPV-related diseases is through a gender-neutral, universal vaccination programme for all children aged 12‒13.

Anything else is discriminatory, inequitable, less effective, and difficult to explain or justify.

References

  1. Royal Society for Public Health. September 2014 newsletter.
  2. Doctors bypass NHS for their daughters’ HPV vaccination. British Association for Sexual Health and HIV (BASHH) press release, 15 February 2011. http://www.thefreelibrary.com/British+doctors+recommend+bypassing+free+National+Health+Service…-a0259077137
  3. Kubba T. Human papillomavirus vaccination in the United Kingdom: what about boys? Reproductive Health Matters 2008;16(32):97–103. http://www.rhm-elsevier.com/article/S0968-8080(08)32413-6/fulltext
  4. Baandrup LBlomberg MDehlendorff C, et al. Significant decrease in the incidence of genital warts in young Danish women after implementation of a national human papillomavirus vaccination program. Sexually Transmitted Diseases2013 40(2):130-5. http://www.ncbi.nlm.nih.gov/pubmed/23324976
  5. http://www.cancerresearchuk.org/cancer-info/cancerstats/types/anal-cancer/Incidence/anal-incidence
  6. Baker P. Going gender-neutral with the HPV vaccine. British Journal of Nursing 2014;23(11):550. http://www.theswallows.org.uk/wp-content/uploads/BJ-Nursing-HPV-june-2014.pdf
  1. Johnson AM, Mercer CH, Erens, B et al. Sexual behaviour in Britain: partnerships, practices and HIV risk behaviours.Lancet2001;358:1835–42. http://www.sciencedirect.com/science/article/pii/S0140673601068830# Cited in Kubba [3].
  2. Giuliano AR, Lee J-H, Fulp W, et al. Incidence and clearance of genital human papillomavirus infection in men (HIM): a cohort study. Lancet 2011;377:932–40. http://www.sciencedirect.com/science/article/pii/S0140673613608090
  3. Monsonego J. Genital infection with HPV in men: research into practice. Lancet 2011;377:881–83. http://www.sciencedirect.com/science/article/pii/S0140673611602778
  4. Potentially HPV-related head and neck cancers. National Cancer Intelligence Network (NCIN) http://www.ncin.org.uk/publications/data_briefings/potentially_hpv_related_head_and_neck_cancers 
  5. Blomberg M, Friis S, Munk C, et al. Genital warts and risk of cancer – a Danish study of nearly 50,000 patients with genital warts. Journal of Infectious Diseases 2012;205(10):1544‒53. http://www.ncbi.nlm.nih.gov/pubmed/22427679
  6. 12.Smith JS, Gilbert PA, Melendy A, et al. Age-specific prevalence of human papillomavirus infection in males: a global review. Journal of Adolescent Health 2011;48(6):540–52. http://www.ncbi.nlm.nih.gov/pubmed/21575812
  7. Recommendations on the Use of Quadrivalent Human Papillomavirus Vaccine in Males — Advisory Committee on Immunization Practices (ACIP)Centers for Disease Control and Prevention 2011; 60(50);1705-1708  http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6050a3.htm.
  8. Zou H, Tabrizi SN, Grulich AE, et al. Early acquisition of anogenital human papillomavirus among teenage men who have sex with men. Journal of Infectious Diseases 2014;209(5):642‒51. http://www.ncbi.nlm.nih.gov/pubmed/24265440
  9. Zou H, Tabrizi SN, Grulich AE, et al. Site-specific human papillomavirus infection in adolescent men who have sex with men (HYPER): an observational cohort study. http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2814%2970994-6/fulltext
  10. Clarke E, Board C, Patel N. Why are anogenital warts diagnoses decreasing in the UK: bivalent human papillomavirus (HPV) vaccine cross-protection or failure to examine? Sexually Transmitted Infections 2014;90(8):587. http://www.ncbi.nlm.nih.gov/pubmed/25398729
  11. Stonewall Gay and Bisexual Men’s Health Survey. http://www.stonewall.org.uk/documents/stonewall_gay_mens_health_final.pdf.
  12. Equality Act 2010. http://www.equalityhumanrights.com/legal-and-policy/legislation/equality-act-2010
  13. Advisory Committee on Immunization Practices. Recommended Adult Immunization Schedule: United States, 2012. Annals of Internal Medicine 2012;156(3):211–17. http://www.ncbi.nlm.nih.gov/pubmed/22298576
  14. Skinner SR, Cooper Robbins SC. Voluntary school-based human papillomavirus vaccination: an efficient and acceptable model for achieving high vaccine coverage in adolescents. Journal of Adolescent Health 2010;47(3):215–18. Doi: http://www.sciencedirect.com/science/article/pii/S1054139X10003186
  15. John Baron MP and chair, All Party Parliamentary Group on Cancer, et al. Time to vaccinate boys against HPV infection and cancer, say parliamentarians with special interest in public health [letter]. BMJ 2014;349:g5789. Doi: 10.1136/bmj.g5789. http://www.bmj.com/content/349/bmj.g5789

[*] By 2008, worldwide the quadrivalent vaccine was already considered the vaccine of choice and had been selected by health authorities in the United States, Australia, New Zealand, Canada, Switzerland, Italy, Spain and Sweden for regional and national immunisation programmes.

Ghosting, a memoir by Andrew O’Hagan in the London Review of Books: a response from a ghost of another kind           

09/08/2015 § Leave a comment

This blog was written as a letter to the editor of the LRB on 29 March 2014, but not published.

I read Andrew O’Hagan’s memoir “Ghosting” in the London Review of Books, 6 March 2014, about his experience of ghostwriting the unauthorised autobiography of Julian Assange, with great discomfort. His reasons for writing it appeared only very near the end, by which time I had already decided this was a professional betrayal of the worst sort, which should never have been published.

Near the end of the piece, O’Hagan’s reasons for writing it finally became clear. He said: “He [Assange] would only ever see me as a servant, and in that moment the account I’m writing here became a reality.”  By that point, I felt more than a modicum of sympathy with him personally, that he needed to get it off his chest. But I still cannot accept that the piece should have been published. By his own admission, O’Hagan makes Assange into a “character” in this piece, turning him into a fiction, when he is not a fiction, while creating no value. The bottom line is, it will surely do Julian Assange’s work a good deal of harm, intended or not, as Assange’s work is belittled by making him look bad personally.

I am an editor and a writer. The main thing I learned from O’Hagan’s piece, was that it must be even harder to be a ghostwriter than it is to be an editor. Everyone knows that most excellent writing has been edited by someone other than the writer(s), even if the editor is given no more than a line of credit in an acknowledgement. Ghostwriters, in contrast, are employed to be invisible. Indeed, O’Hagan made his own invisibility a condition of accepting the contract. Now, he has decided to violate his own anonymity, because what he went through as a ghostwriter was difficult and he wanted revenge. Worse, O’Hagan blamed Julian Assange for his own need to have his experience seen and heard on the grounds that he is a writer.

Editors accept that they do not control the content of someone else’s writing, even though they can have a big influence. The same should surely hold true for ghostwriters also. In my experience, editors are servants ‒ by definition. Andrew O’Hagan does not seem to have liked or accepted this condition. That has nothing whatsoever to do with the personality of Julian Assange, who believed the book was written for him and was intended to be seen to be by him and about him. What Assange learned to his great upset was that this book was never for him, nor by him, and that by accepting money for it, it belonged to his publishers. That’s a hard lesson when you are unhappy about the content, and when the book is not only about you but was supposed to be by you.

What is appalling is that Assange’s inability to edit the text was seen by everyone else ‒ and specifically a cartload of editors and a writer, who should have known better ‒ to be entirely his failing. What is ignored is that he has been imprisoned for a number of years already, even if it was in a country mansion and is now in an embassy. Surely no one can ignore the desperation and effect on behaviour that this engenders, after Salman Rushdie’s Joseph Anton.

If Assange betrayed O’Hagan and the book’s publishers, they in turn also betrayed Assange. If O’Hagan actually believed that Assange would be able to realise, after many many months of talking with him with a tape recorder on, never seeing anything on paper, what this book was or was not likely to contain, then O’Hagan’s judgement in this instance, and the judgement of the publishers, was deeply flawed.

Most people who are not wordsmiths have no idea how things get written. Very few people who write things know how to edit them on their own or how they get edited. If they did, the world wouldn’t need editors, let alone ghostwriters.

Accepting the global reality of “self-help” abortions

20/07/2015 § Leave a comment

Taking medical abortion pills at home to have an abortion, mostly before ten weeks of pregnancy, though not always, is happening in most countries across the world, and each year more than ever. It is happening both in countries where terminating most pregnancies is still a criminal offence and registered abortion services are not available, and also increasingly where legal abortion may be available but is very expensive, and/or fraught with barriers and burdensome requirements, and/or requires travelling a long distance for services, including having to cross a border.

The fact is that almost all abortion laws and policies, and most health services, are way behind the times in acknowledging that early abortion with mifepristone + misoprostol is both easy and safe ‒ so easy and so safe that women are sharing information with each other on how to do it, bypassing formal service delivery and doing-it-themselves. Moreover, other women ‒ and a growing number of health professionals ‒ are helping women to self-induce abortions, giving them simple instructions based on proven guidance on how to do it and advising them to have somewhere to turn to if they are worried or need help.

The permutations of how this plays out in different settings are worth spelling out. In countries where there are almost no legal abortions, women buy the pills from pharmacies, street drug sellers, and the internet. They may have been given good information from a health professional or someone else on how to use the pills, or not. But use them they do, and although there is no way to obtain accurate data on how many do so, nor the extent to which they have had complete abortions, the numbers are probably in the millions internationally, annually.

Many of these women make their way to hospitals or doctors after self-inducing their abortions. Unlike those who have used an unsafe method (drinking a poisonous substance, inserting a twig or coat hangar into their uterus, or throwing themselves down the stairs), they do not present with the well-known range of serious complications ‒ sepsis, haemorrhage, uterine rupture or other major organ damage ‒ which in the past killed many women. No, very few of them have a major complication. However, if they have used misoprostol alone because mifepristone was not available, some of them may have an incomplete abortion ‒ unless they know the formula for taking additional doses of misoprostol until they are sure the abortion is complete. Some get frightened in the process, since they are often doing this alone, and they seek help when what they needed most was reassurance.

In places like Poland and Ireland and Northern Ireland, for many decades now, women have been crossing their national borders in large numbers to obtain legal abortions. However, it is now becoming better known that medical abortion pills can be obtained via the internet from trustworthy suppliers ‒ e.g. Women Help Women and Women on Web ‒ who provide women with accurate information, based on WHO guidelines, send them the pills, and are there for advice afterwards if required. Hence, more and more women are obtaining information and the pills that way. And they are having their abortions at home ‒ safely. From these two internet providers both mifepristone and misoprostol are available, and with the combination of these two medications, the complete abortion rate up to 9-10 weeks of pregnancy is around 96-98% ‒ or higher if used even earlier.

In the past 5-10 years, in order to help women find this information, safe abortion information hotlines have been set up in a growing number of countries where abortion is legally restricted. These have been started mainly by women’s rights activists, who maintain a free phone line that women can ring and get information on how to do an abortion safely. These hotlines are found in Latin America, sub-Saharan Africa, Asia and Eastern Europe. They work with each other across countries and regions and with other groups doing women’s rights work. They use public meetings and statements, blogs, text messaging, social media and graffiti to publicise their existence. They often have manuals, leaflets, and videos that have been written for women in their own languages, often using visuals to make explanations clear. Because they supply information but not pills, they are not doing anything illegal.

This situation is not ideal, and everyone involved in supporting the legitimacy of self-help abortions knows that well. For one thing, abortion is subject to criminal law everywhere, and prosecution is always a risk. For another, where abortion is legally restricted, the pills may only be obtainable on the black market, which makes it hard to find them and means they can be very expensive.

In addition, it is important to be aware that the quality of pills sold on the internet is a major issue, as there are many websites offering the pills that are not trustworthy. Such pills may not be of a high quality, or they may contain only small amounts of the medication. Some may even be fake. Moreover, if misoprostol pills do not remain vacuum sealed in a blister pack until soon before use, they may lose some of their effectiveness. Hence, the source and quality of the pills is crucial. Some safe abortion hotlines, knowing these problems, have helped pharmacies to stock the right pills. In at least one case, a group has even started their own pharmacy.

Nevertheless, even with these limitations, the numbers of deaths from complications of unsafe abortion have been falling rapidly in the past 10-15 years around the world ‒ not only because national laws have been changed for the better and in some cases some safe services have been set up, but also because women have taken a safe abortion method into their own hands.

This reality is well-known in the global South, particularly in urban areas, but until recently it has been ignored where the legal practice of abortion is the norm, e.g. in North America, Europe or Australia. This ignorance is changing rapidly, however, because women in the global North are also starting to avail themselves of medical abortion pills via the internet, and bypassing their health system and its costs and controls. Cases that have emerged to date have mainly been of women who are too late for a legal abortion, or who are poor and cannot afford a clinic, or who live in rural areas where services are scarce or non-existent, or who are migrants from countries where self-use of abortion pills is common.

But what has happened is that a few of these women, who have used the pills on their own, have sought medical help after self-inducing, and that is how the trouble has started. Many reproductive health professionals don’t like the idea of women taking the means of abortion into their own hands, even if they themselves are not willing to provide abortions, and like some of their brethren in Latin America and elsewhere,[1] a few of them are reporting women to the police. In 2013, the International Campaign for Women’s Right to Safe Abortion reported cases in 26 countries globally and many more have been reported since.[2]

Even in India, where so many abortions remain unsafe because the government has failed to make services accessible, in spite of a liberal law dating back to 1972, the widespread self-use of abortions pills is suddenly being vilified.[3] In the USA, UK and Australia, more than once already, the justice system has responded by bringing the criminal law down on the heads of those who have been “caught in the act”.

Officials have begun to notice that self-help abortion is not just a “third world” issue. In Ireland, about five years ago, a Chinese woman who owned a pharmacy was caught selling medical abortion pills she had brought in from China. Luckily for her, she was fined but not jailed.

In Northern Ireland this year, more than 200 people wrote a public letter stating they had purchased medical abortion pills through the internet ‒ in solidarity with a woman who had done so for her daughter and was reported when she took her daughter for a post-abortion check-up. She is currently awaiting trial.[4]

A woman in a rural area of Pennsylvania, USA, was jailed for 9-18 months for purchasing pills for her daughter.[5]

A young couple in Australia were caught after purchasing and using the pills and both were charged. However, their defence successfully argued that the pills are not a “noxious substance” but rather WHO-approved essential medicines, and the charges were dismissed.[6]

A woman in Idaho, USA, was similarly charged and using this same argument, also successfully argued that it was unconstitutional for her to be prosecuted.[7] A recent case to come to light is a woman in Georgia, USA, who took misoprostol, purchased allegedly from Canada, and had a miscarriage in her car (she was 22 weeks pregnant) and had to call for help. She was initially charged with murder, a charge that was withdrawn within 24 hours because under current Georgia law, it transpired that this charge was not permitted.[8]

In the UK, in 2009 a woman who sought an abortion beyond the 24-week time limit, and was turned down for help by at least two clinics, successfully purchased medical abortion pills through the internet and terminated her pregnancy. Having sought post-abortion care, she was reported to the police, charged and in 2012 was sentenced to eight years in jail by an anti-abortion judge, a sentence that was later reduced on appeal to ‘only’ three years.[9] She was not charged with infanticide under a 1929 UK law, which would have carried a much longer sentence, only because the fetus was not found.

In 2015, a woman in a London ayurvedic shop was caught selling medical abortion pills when women who had purchased them went to hospital for treatment after using them.[10] She was sentenced to 27 months in prison, the length of the sentence described as a warning to others. One can only hope this sentence will be reduced on appeal as well. In this case too, the charge was to do with the sale of a “noxious substance” under an 1861 law, the Offences against the Person Act, that is still on the statute books in the UK, Australia and probably many other former British colonies. A spokesperson for the Medicines and Healthcare Products Regulatory Agency, the agency that investigated the case with the police and brought the charges, was quoted in a newspaper article describing the case as saying: “Selling mifepristone with no medical qualifications is illegal and can be extremely dangerous for patients. If you require medical advice, we recommend you visit your GP, as a healthcare professional is best placed to advise you.”

Fearmongering that medical abortion pills are dangerous, and the “hook” of ‘using a noxious substance’ from the British 1861 Act to hang criminal charges on and sentence women to prison, wilfully ignores the fact that mifepristone and misoprostol are not noxious substances but are on the WHO Essential Medicines list. Medical abortion pills, with medical involvement and without it, are safe, and they are effective as soon as a woman misses her period, meaning abortion can take place much earlier than in the past.

The real message from those who are prosecuting women is: ‘Get back in line! You are not permitted to be in control here!’ The real offence in their eyes is that women are having abortions “outside the system”. In Ireland, the 2014 abortion law, which has allowed only a handful of legal abortions so far (the pathetic sum of 26 in 2014) also created a prison sentence of up to 14 years for having an abortion inside the country but outside ‘the system’. This was meant, one can only assume, to warn women in thinly veiled terms not to purchase pills over the internet. It hasn’t worked. In the USA, 38 states require an abortion to be performed by a licensed physician, 21 require an abortion to be performed in a hospital after a specified point in the pregnancy, and 18 require the involvement of a second physician after a specified point.[11]

Prosecution is very threatening for individual women, but at the same time, pursuing individual women like this is frankly absurd. Nothing is going to stop medical abortion pills from being manufactured, distributed, purchased and used widely on a global scale. It has been happening since at least 1988 in Brazil, even though it has long been banned, and the practice spread rapidly from there because it meets a huge unmet need among the one-in-three to one-in-five women on earth who need an abortion in their lifetimes, 42 million of them globally every year.

Countries in both the global North and the global South need to recognise this and act rationally and reasonably in response ‒ in a way that is to women’s benefit, not to punish them. The evidence exists for all to read that the use of medical abortion with mifepristone + misoprostol from the point soon after a woman first misses her period is both extremely safe and very effective. Why should women wait weeks or months and even then have to beg for permission? Criminalising safe self-help abortions and the people who make them possible is not the answer. What is the answer is getting health systems to support women’s access to safe medical abortion without barriers, restrictions or delays. It means abolishing the criminal laws against abortion in every country.

It is time to let women buy medical abortion pills over the counter and have abortions as early as possible in the privacy of their own homes. It is time to fund nurse- and midwife-led safe abortion information hotlines and community-based services to ensure this happens in the safest possible way.

Health systems need to continue to ensure help is available when needed, and that there is a safe space for women to have abortions in a primary care setting when home is not a safe place, and when women are beyond 10-12 weeks of pregnancy. It must not be forgotten that not all women are organised or aware enough to have abortions very early, though the great majority can and do. In some cases, women have medical conditions (including fetal conditions) that lead to the need for wanted pregnancies to be terminated, often well into the pregnancy. Instead of demonising women in any of these situations, health systems must ensure that safe abortion at the woman’s request is available when they need them.

All the cases mentioned here were reported in the newsletter of the International Campaign for Women’s Right to Safe Abortion. To receive the newsletters, endorse and join the Campaign: www.safeabortionwomensright.org. 

To sign the petition calling on the Northern Ireland government to drop the charges against the woman who bought medical abortion pills for her daughter: www.thepetitionsite.com/takeaction/716/597/066/

Posted 20-07-15. Revised 09-08-15 and 12-08-15.

_________ 

References

[1] Cases in El Salvador and Mexico are frequent, and in Chile, for example, 73 convictions for abortion since 2005, all of poor women, were identified by the Public Defender in 2014. http://www.theclinic.cl/2014/06/12/como-opera-la-justicia-en-los-casos-de-aborto-la-historia-de-tres-condenadas-por-el-delito-de-las-mujeres-pobres/#commentsSection

[2] Abortion in the Criminal Law: exposing the role of health professionals, the police, the courts and imprisonment internationally. International Campaign for Women’s Right to Safe Abortion, October 2013.

[3] http://www.mid-day.com/articles/mumbai-saw-nearly-32000-abortions-in-one-year/16379195

[4] http://www.theguardian.com/uk-news/2015/jul/15/pro-abortion-campaigners-picket-derry-police-station-mother-prosecution; http://www.rte.ie/news/2015/0619/709227-abortion-london/ ;

http://m.belfasttelegraph.co.uk/news/northern-ireland/belfast-woman-will-go-on-trial-for-helping-her-daughter-to-have-a-medical-abortion-31314912.html

[5] http://www.nytimes.com/2014/09/22/magazine/a-mother-in-jail-for-helping-her-daughter-have-an-abortion.html?_r=0

[6] http://www.theaustralian.com.au/news/nation/jury-out-in-landmark-abortion-trial/story-e6frg6nf-1225938611194

[7] http://advocatesforpregnantwomen.org/blog/2015/06/a_major_victory_for_pregnant_w.php

[8] http://www.walb.com/story/29263746/official-5-month-old-fetus-lived-30-minutes-after-abortion-pill-delivery ; http://www.slate.com/blogs/the_slatest/2015/06/09/georgia_woman_charged_with_murder_for_taking_abortion_pill.html  ; http://www.slate.com/blogs/the_slatest/2015/06/10/kenlissa_jones_case_murder_charge_against_woman_who_took_abortion_pill_dropped.html

[9] http://www.bbc.co.uk/news/uk-england-york-north-yorkshire-22875092

[10] https://www.gov.uk/government/news/woman-sentenced-to-27-months-for-selling-abortion-pills-illegally

[11] http://www.guttmacher.org/statecenter/spibs/spib_OAL.pdf

Berer Blog statistics

20/07/2015 § Leave a comment

Readers of this blog might be interested to know that it has been viewed by people from 86 countries, ranging from 1 per country to 435 from the UK. The numbers of posts and views since it started have been as follows:

2011  15 posts    1,432 views

2012  26 posts    4,346 views

2013   7 posts     4,653 views

2014  10 posts    1,637 views

2015   8 posts     1,422 views to 20 July

Cheers! Marge

Global Strategy for Women’s, Children’s and Adolescents’ Health: A Comment on the new Zero Draft for the Post-2015 Agenda

18/07/2015 § Leave a comment

(This blog was first published on BMJ Blogs on 22 June 2015.)

This week in New York, the Zero Draft of the Outcome Document of the Post-2015 Development Agenda ‘Transforming Our World,’ will be negotiated at the United Nations (UN). The document provides the main framework for the Post-2015 Development Agenda that will be adopted during the UN Summit in September. A Post-2015 Women’s Coalition, coordinated by the Center for Women’s Global Leadership in the US (http://www.post2015women.com), has been contributing to the development of these frameworks in support of a comprehensive gender equality strategy which is inclusive, addresses inequalities, and is accountable to all. While the Outcome Document does highlight women’s rights and gender equality prominently, it is not a given that this focus will remain, since women’s rights are often used as a bargaining chip and dropped during negotiations.

Moreover, according to the Post-2015 Women’s Coalition, the Zero Draft of the Outcome Document falls short of ensuring the universal realisation of women’s and girls’ human rights as a core principle. Other important criticisms of it by Coalition members are that it creates only voluntary follow-up mechanisms, which are disconnected from existing human rights monitoring mechanisms, and its restricted targets and indicators fail to capture the ambition needed for transformative change (The Zero Draft for Post-2015 Development Agenda contains gaps on key feminist issues, 17 June 2015. http://www.awid.org/node/3574).

Equally problematic are omissions in the 2015  Zero Draft of the Global Strategy for Women’s, Children’s and Adolescents’ Health, which will feed into the final Outcome Document as regards women’s and children’s health. Its authors claim it is based on stakeholder consultations with over 4,500 participants, that subsequent drafts will reflect updated content from working papers and further consultations, and that a consensus process is underway to finalise its goals and targets (Global Strategy for Women’s, Children’s and Adolescents’ Health: Zero Draft for Consultation, 5 May 2015). But will it call for sexual and reproductive health and rights?

The UN Secretary-General, Ban Ki-moon, launched the first Global Strategy for Women’s and Children’s Health in 2010, in order to focus attention on the lack of progress towards Millennium Development Goals 4, 5 and 6 (to improve child and maternal health and combat HIV/AIDS, malaria and other diseases) and highlighted how these goals also play a role in the other MDGs. That first Global Strategy called for urgent increases in resources and coordinated efforts to accelerate progress for women and children, and it specifically identified safe abortion as an essential intervention for women. Yet in its 2015 iteration, no longer in the hands of Ban Ki-moon, the focus on women has been reduced to a focus on maternal health only, reverting back to the narrowness of MDG 5, anchoring the needs of women to childbearing.

I applaud the many people who put so much effort into documents like this, but a far greater commitment to democratic representation of women’s proven needs is called for. Women are far from just mothers, and neither adolescents’ health nor women’s health can be reduced to maternal health. Unless they are amended substantially, these documents will take us back several generations. Improving maternal health in isolation, and tying women’s health needs to those of infants and children, failed women during the 15 years of the MDGs, and will continue to do so.

The 2015 Global Strategy for Women’s, Children’s and Adolescents’ Health only mentions abortion once, referring briefly to unsafe abortions among adolescents and the potential for reducing unsafe abortion through the use of contraception. This is a major omission and is particularly disturbing given that the 2010 Strategy did call for abortion to be made safe. It is critical that the key stakeholders in this process demonstrate their support for explicit inclusion of women’s right to safe abortion in the strategy.

Along with the 20 prominent individuals and over 60 international and national NGOs who signed the “Joint statement on the importance of including safe and legal abortion as a key approach in Round 2 of the Global Strategy for Women’s, Children’s and Adolescents’ Health” on 1 June 2015, http://www.ipas.org/~/media/Files/Joint-Statement-on-Zero-Draft-Global-Strategy.ashx), initiated by Ipas, the International Campaign for Women’s Right to Safe Abortion is concerned that the Zero Drafts of the Outcome Document and the Global Strategy for Women’s, Children’s and Adolescents’ Health fail to address sexual and reproductive health and rights adequately, and in particular, fail to make any call for women’s right to safe abortion.

Fertility control is essential to the earth’s future and safe abortion is essential to fertility control. Abortion needs to be decriminalised globally as an integral part of sexual and reproductive rights. If documents purporting to be about gender and women’s rights do not reflect this, then, I’m sorry, they do not support women’s health.

Upwards of a million women have died from unsafe abortions internationally since the Programme of Action of the International Conference on Population and Development was approved in 1994. Although the death rate has fallen a lot since 1994, it is mainly because women have taken the law (and medical abortion) into their own hands. The Programme of Action was passed only with a fatally compromised position on safe abortion, but 20 years on, this compromise should not remain written in stone. The world has moved forward on this issue ‒ and so have women themselves. 42 million women have abortions every year, and half of them are still unsafe.

The International Campaign for Women’s Right to Safe Abortion has members in 21 African countries, 20 Asian countries, 6 Pacific countries, 11 Central and Eastern European countries, 19 Latin American and Caribbean countries, 8 Middle Eastern/Mediterranean countries, 14 Western European countries and both North American countries. These more than 900 organisations and individuals are the voice of women internationally on this issue. Maternal health demands that every mother should be a willing mother. The sustainable development goals need to call for women’s right to safe abortion ‒ to reduce maternal deaths from the complications of unsafe abortion, to ensure access to safe, legal abortion on request as a legitimate form of fertility control ‒ and as a public health, gender equity and human rights issue.

UK Parliamentary Hearing on Population Dynamics in the Post-2015 World – urbanisation, migration, climate change and conflict – 12 March 2015

12/07/2015 § Leave a comment

Proposed questions and responses from Marge Berer

  1. You suggested in your RHM editorial May 2014 that we need to start thinking very differently about ‘population’. What did you mean by this?

What I meant were several things: 1) that given the growing risk of disasters arising from climate change, Hanna Zlotnik, a long-time expert at the UN Population Division, said in 2011 in a conference in London about Population and sustainability issues that in 50 and 100 years from now, population growth and its consequences may no longer be the main population-related issue to confront but rather that huge numbers of people may be killed in natural disasters, reducing population levels enormously. Almost no one seemed to hear her. Consider for example just in the last few years the after-effects of the tsunami in Thailand, the tornado-related storms in the Philippines, the nuclear power station disaster in Japan  ‒ yet these are just the dress rehearsal.

2) To put it in another way, the future of human life on this planet is at stake. The planet will survive, but the question is: will we? Already, many species of animals are becoming extinct. On 6 March the Guardian letters page was all about threats to global food security. The meaning of sustainable development to me is about making changes that will ensure the future of human life beyond the next few generations. That includes in industry and economic production, food and energy production and consumption, and reduction in pollution and waste. Yet much of this is considered a minor irritant on the political agenda; only the Green Party and a few NGOs like Greenpeace take it seriously enough here in the UK, and the media give it far too little attention. It’s good that Alan Rusbridger has finally decided the Guardian will begin to do so, I hope it makes a difference. I believe these issues need to become a major focus of national and European Parliaments and the UN system.

  1. Can you expand on your comment that family planning did not save the world in the 1960s and will not do so again now?

I said this because I do not believe that reducing population growth by greater use of contraception is “the answer” to sustainable development. It is not. Fertility control is crucial for both men and women. Keeping fertility rates low in countries which have achieved low fertility is crucial. Like Britain. So why is our FPA getting almost no funding anymore? They are a shadow of what they used to be. Education for Choice had to close because it couldn’t get funding. So I recommend that you try to ensure the government prioritises funding for groups like them again.

Reducing fertility rates in countries with above replacement fertility levels, i.e. most middle-income countries, or high fertility, as in the poorest countries, is equally important. But it is also important to recognise that the total fertility rate globally by 2005 was already as low as 2.6, that is, near the replacement level of 2.1, and it has fallen further since then. In the more developed countries it was already well below replacement at 1.6 by 2005. And although in the least developed countries (which are only 18% of the global total) it was 5.0,[1] that is far lower there than it was even 20 years ago.

“Development is the best contraceptive” ‒ was the slogan of the global South at the first ICPD in 1974, because development was not being prioritised enough. So my second recommendation is definitely to support the delivery of contraception to everyone who wants it, but also to ensure women are given a choice of method and supported to use it because the drop-out rate is still high, and that targets and coercion should not be permitted. At the same time, contraceptive use alone will not take care of the environment and development, nor will it erase the problems of gross inequality that we face on the earth today, nor reduce poverty on its own.

Let me stress also that there are almost 44 million abortions globally every year which cannot be ignored. I consider abortion a legitimate health service for women, not a problem. But half of all abortions are still illegal and unsafe. That is unacceptable. So I have to ask why everyone is not more critical of those who promote contraception but are anti-abortion and of the target of getting 220 million women on contraception by 2020. I thought we had dealt with the risk of abuse arising from targets and incentives in the 1980s ‒ these gave family planning a bad name then and could do so again. It wasn’t just the focus of ICPD on sexual and reproductive health that took the focus away from family planning; it was coercive practices and the failure to ensure informed choice and consent that did it.

  1. Would you like to explain in a bit more detail your suggestion to ‘re-conceptualise’ family planning?

I said this because we still underestimate how much access to the means of fertility control has changed how people see having children. Most people want fewer children and a growing percentage want no children at all. With total fertility at less than two children, women spend only 1-2 years of their lives pregnant. Many women are postponing first births until their late 20s. Over 60% of women born in 1965 in England & Wales were childless at age 25. So the need to prevent pregnancy covers many years, starting in adolescence. The rest of the time, people are not planning their family, but managing their fertility. The phrase “family planning” is not what is going on. What is going on is the wish to have sex without fear of pregnancy or sexually transmitted infections. If programmes were based on this fact, there would be far fewer unwilling mothers and fathers, especially among adolescents who, in many countries, are still not allowed to access contraception.

  1. In a footnote you highlighted some negative consequences of below-replacement fertility. Can you expand on this?

Below-replacement fertility is, in my opinion, a very good thing. Few countries put enough resources into jobs, housing, education for their young, health services, money for benefits for the poor, or pensions for older people. However, below-replacement fertility makes a lot of governments very nervous ‒ Russia, Iran, Turkey are examples. Countries see a growing population as a symbol of status and power among nations, necessary for economic growth, or for having enough men to fight wars, and so on. Racism prevents many low fertility countries from encouraging in-migration from countries with high fertility. Instead, countries try to increase birth rates by restricting access to safe abortion, contraception and sterilisation, as well as offering positive incentives, as in France. Global education on this issue and why below replacement fertility is a good thing for sustainable development and the environment is badly needed.

  1. What are the main obstacles to expanding family planning and sexual and reproductive health and rights laws/policies and services at a global level and in particular developing countries?

The main obstacle is misogyny, and the fact that so many men are unwilling to give up their power over women and over women’s sexuality and reproduction.

The second is the anti-choice movement. Abortion is a major method of fertility control: one in three women in Britain has had an abortion and yet we have a very high contraceptive prevalence rate. It’s past due time to stop treating abortion as less acceptable than contraception. Efforts to make even some abortions illegal should be buried in the history books.

The Vatican and the Catholic church are the world leaders in opposing safe abortion and family planning, and I believe they have encouraged anti-women fundamentalism and a conservative backlash against women’s autonomy among other conservative religious as well, serving as an example of how to gain political power. I have just been reading Good Catholics,[2] which is a history of the extent to which the Vatican and Catholic bishops in the USA have gained political power, not only to influence national politics but also to influence who stands for election, and who wins and loses. I think it should be required reading for politicians, and that the ethics of these actions must be challenged.

My last recommendation to you as Parliamentarians is to stregthen your own APPG, support the European Parliament’s SRHR group, who made an important commitment to safe abortion a month ago in Brussels, and try and get our Parliament to agree that sexual and reproductive health and rights are crucial for the wellbeing of the whole population.

References

[1] Prof. Hans Rosling. www.gapminder.org .

[2] Patricia Miller. Good Catholics: The Battle over Abortion in the Catholic Church. University of California Press, 2014.

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These perspectives are spelled out in more depth in my editorial: The sustainable development agenda and unmet need for sexual and reproductive health and rights. Reproductive Health Matters 2014;22(43):4‒13. http://www.rhm-elsevier.com/article/S0968-8080(14)43775-3/pdf

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