Angels with wet wings won’t fly’
Inaugural Lecture
May 2007
Vice-chancellors, The Dean, Distinguished Guests, my Research Teams, Members of
the Gynae Oncology Unit and the Department of Obstetrics & Gynaecology,
Colleagues, Friends and my Family
I have belonged to the two great institutions of the University of Cape Town and
Groote Schuur Hospital since I was 17 years old, when I came to Cape Town to study
medicine in 1976. I remember in my first year, learning of an anonymous writer in the
16th century who described the role of the physician as ‘to cure sometimes, to relieve
often and to comfort always’. These core values have guided me during my journey
through the corridors of UCT and Groote Schuur Hospital. However, medicine and its
practice have demanded that we do much more than just take care of our patients - it
has also demanded that we teach and train the next generation, that we do research,
that we ‘publish or perish’, that we influence and inform health policy, government
ideology and so on. We are constantly asked to push the boundaries of our vision and
our work, to provide sound and accurate evidence of the validity of our interventions,
to be accountable to our patients and to society at large. These are not small
challenges and rising to the occasion is a constant work in progress. I have had many
great teachers throughout my journey, too many to name individually, but the greatest
among them were my patients.
In the 1980s teams of researchers were interested in the high infant mortality found in
the favelas or slums of North Eastern Brazil – children were dying, as they still do in
Africa, from a range of preventable illnesses, chief among them being diarrhoea. It
was observed by some that mothers showed very little emotion when their children
died. This observation prompted various interpretations from social anthropologists.
One of the interpretations was that the constant state of scarcity and deprivation in
which impoverished women lived had ‘a pernicious effect on their ability to nurture’.
Such mothers, it was claimed, expected some of their children to die, and as a result,
were forced to chose between their off spring, nurturing those seen as more likely to
survive and neglecting those more likely to die. Thus active, animated infants were
more highly valued than those perceived to be quiet and listless and less likely to
survive. This inevitability of death, it was believed, discouraged mothers from
bonding with sick infants and therefore, attempting to save them when they fell ill and
subsequently died. This theory was known as ‘selective or benign neglect’.
Another group of researchers however, approached this observation using a different
methodology which included in-depth interviews and intensive fieldwork over a seven
year period during which 535 infant and child deaths were identified from household
surveys. In contrast to the ‘selective neglect’ theory, the latter group of researchers
found that mothers in the favelas experienced deep anguish at their children’s
illnesses and went to great lengths to find treatment for their sick children, involving a
range of practitioners from religious faith healers to herbalists to shamans and to
orthodox medical practitioners when available, either in sequence or in parallel.
Health seeking behaviour was governed by a complex set of biomedical, socioeconomic and psycho-cultural realities. One of these was the widespread belief that
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children who die in infancy, transform into angels and develop wings in order to fly to
heaven. The instruction to mothers was not to cry when their children died, as their
tears would wet the wings of their infants, and angels with wet wings won’t fly! Many
mothers described their terrible struggle to hold back their tears for fear of keeping
their infants in permanent limbo and preventing their flight to heaven. A very
different interpretation of the mother’s apparent lack of emotion, brought about by a
different approach to listening.
This work had a profound effect on my way of thinking and understanding my
patients and their relationship to their health. I was born into and raised in the
Apartheid era, a system that divided and separated us from fellow South Africans,
particularly black South Africans. Although I was conscious of apartheid and its
manifold injustices while at school, my first real encounter with the reality of the lives
of black South Africans occurred as a young medical student. Suddenly we were
taking histories and examining patients whose language we did not speak and whose
culture and the harsh of realities of their lives we barely understood. The wards at
Groote Schuur Hospital were segregated – the black side always full to overflowing,
the white virtually empty. Black medical students, the few that there were, were not
allowed to examine white patients.
Throughout my student years, our lives were permeated by the horrors and injustices
of apartheid, and the knowledge that we medical students were deeply privileged. It
was haunting to know that there were thousands of young women with the same
abilities and aspirations as mine, who were denied an education and often destined to
work in domestic service, while I had access to an outstanding, world class education.
I entered medicine with naive innocence and it came as a terrible shock to learn that
our profession had a history of colluding, directly and indirectly, with violence and
oppression. During the 80s after a series of senior house officer jobs I worked as a
general practitioner in Athlone, during the time of the Trojan horse episode and the
heroic battles against the oppression of Apartheid that were taking place across the
country – a time when people injured by police brutality could not seek medical care
for fear of being arrested and tortured. Thousands of South Africans were being
tortured and detained without trial, while our profession was largely silent, save for
the likes of the Wendy Orrs and Francis Ames’ of this world.
I was a young doctor when Steve Biko was murdered by the security police with the
direct collaboration of the medical profession. I learned of the collusion of our
profession in the Nazi holocaust and the terrifying experiments committed by doctors
against inmates of the concentration camps during the Second World War. All these,
and many other lessons and experiences were sobering and taught me that science can
never be divorced from its context. Medicine is not value free.
My first encounter of death was as a young intern at Somerset Hospital in Obstetrics
& Gynaecology, when a mother of 5 was admitted after undergoing a backstreet
abortion that went horribly wrong. She died from overwhelming septicaemia. She was
one of many women who underwent unsafe abortions in a desperate attempt to control
their fertility. Later I encountered women who had been raped or savagely beaten by
their intimate partners. It was disturbing and distressing to realise that our profession
did not distinguish itself by caring even remotely adequately for these women, nor did
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it frame these women’s experiences as human rights abuses and major public health
problems. I learned that suffering and ill-health were profoundly political – how
people were seen was strongly influenced by prevailing attitudes and prejudices, that
political ideology, class, race and gender determined how one was treated, what
illnesses one developed, what access to care and the type of care one received.
Women’s health entered the global health agenda at the first International Conference
on Population and Development held in Cairo in 1994 where it was recognised for the
first time that population, gender and reproductive health issues needed to be urgently
addressed in order to eradicate poverty and improve the quality of lives of the world’s
poor. Six years later the Millennium Development Goals were formulated at the
largest United Nations Assembly ever convened with 189 member states voting
supportively. The goals are meant to be achieved by 2015.
These goals are listed here. It is noteworthy that gender equality, empowering women
and reducing child and maternal mortality are specifically mentioned in the goals.
What the world has finally woken up to is that women’s health, in the broadest sense
of the concept of health, defined by the World Health Organisation as a ‘…state of
complete physical, mental and social wellbeing, and not merely the absence of disease
or infirmity…’;unless women’s health is prioritised, eradicating extreme poverty,
hunger and deaths from preventable diseases will not be possible.
Well how are we doing with regard to achieving these goals, particularly in our
continent of Africa? I am now going to show you 7 slides of graphs highlighting some
of the Millenium Development Goals
This slide shows the proportion of people living on less than a dollar a day, one of the
benchmarks for measuring extreme poverty. On this axis are different regions of the
world and on this, the proportion of the population living on less than a dollar a day.
There have been some dramatic changes, particularly in East Asia, largely led by
China, where the proportion of people living on less than a dollar a day has more than
halved in the 10 years between 1990 and 2000. In Africa however, where just under
half the people live on less than a dollar a day, there has been no change in the past 10
years.
What about achieving universal primary education for boys and girls? This slide
shows that there has been some improvement in the world, even in Africa where the
proportion of children accessing primary education has increased from around 50% in
1990 to 74% in 2001. Still a quarter of children do not have access to primary
education and the proportion of girls accessing primary education is roughly half that
of boys, so the gender gap remains in place.
Adolescent fertility rates have important health implications for women – women who
bear children as teenagers are usually denied an education, have poor health profiles
and often remain deeply socially and economically subjugated. This slide shows the
adolescent fertility rates in different parts of the world. As you can see, we have the
highest adolescent fertility rate in Africa at 135/1000 compared to 16/1000 in East
Asia and 30/1000 in Europe.
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The data on Maternal mortality, one of the more specific millennium development
goals is even more devastating. As you can see from this slide, nearly 1000 women
out of every 100 000 live births die from pregnancy related deaths. This is a tragedy
of enormous proportions and the reason for this is very simple – inadequate access to
health care.
Not only has the global HIV/AIDS epidemic caused widespread devastation, but it
has also diverted resources, energy and political will away from the myriad of other
important illnesses experienced by the world’s poor. These are the data from 2006.
Just under 40 million people were known to be infected with HIV by the end of 2006,
with over 4 million new infections recorded and nearly 3 million deaths. In South
Africa, 5.5 million people were infected with HIV by the end of 2006 and that in a
population of just 44 million which is a catastrophic proportion of infected people.
This map shows you the global distribution of HIV in the world and it is instructive to
note that Southern and East Africa have the highest proportion of cases in the world.
This slide shows it even more graphically. 25 million of the world’s cases of HIV are
found in sub-Saharan Africa, with the next highest prevalence in south east Asia at
around 8 million people infected. And nearly 60% of people infected with HIV are
women.
It was with this background that my research interest in cervical cancer developed
over 10 years ago. Approximately half a million women develop cervical cancer
every year, of whom a quarter of a million die. Over 80% of women who develop
cervical cancer live in the developing world, particularly Africa, Asia, South East
Asia, Latin America and the Caribbean, countries that have access to less than 5% of
global cancer care resources. Yet we have known how to prevent cervical cancer since
the early 1900s when George Papanicolaou developed the Pap smear. This Greek
physician discovered that cervical cancer was preceded by a precursor phase, when
the cells of the cervix were abnormal but not yet malignant - and that these abnormal
cells could be detected by gently scraping a spatula against the skin of the cervix,
placing the spatula on a slide, and after applying a special stain, known as the
Papanicolaou stain, the cells could be visualised through the microscope. This
apparently simple discovery would later have a major impact on women’s lives – in
fact, many consider the Pap smear, as it became known, as one of the most successful
public health interventions after vaccination.
It took about 30 years for Papanicoloau’s work to be widely adopted, but once mass
organised screening programmes using the Pap smear were introduced, the incidence
of and mortality from cervical cancer fell dramatically, to the point that today,
cervical cancer is a rare disease in those countries that have made Pap smears widely
available on a regular basis to women.
So if cervical cancer is preventable, why is the incidence of cervical cancer in
developing countries in 2007 equivalent to what it was in Europe and the UK in the
1950s? These are our very own South African favelas – this is how people in our
beautiful city of Cape Town with that beautiful mountain are living in 2007. Why is it
that women who live in these circumstances, present to us with advanced, often
untreatable and incurable cervical cancer when the means to prevent the disease have
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been known for nearly 100 years? Well the answer is not surprising – it all comes
down to equity of access to health care. The infrastructure to maintain effective Pap
smear screening programmes is complex and expensive – to give you an idea, it costs
approximately £150 million per year to support the UK screening programmes – and
$8 billion per year in the USA. These figures are beyond the gross domestic product
of some poor countries.
I would now like to show you a short clip from a documentary we made about
cervical cancer. We called it the Silence of the Wombs and here is the story of Mrs
Radebe, who presented to us with an advanced cervical cancer from which she later
died despite receiving radical radiation therapy. Her story is typical of the millions of
women afflicted with cervical cancer.
This disease kills women when their role in society, especially poor communities is
critically important as breadwinners, heads of households and the moral force of their
societies.
I met Thomas Wright, professor of gynaecological pathology and Louise Kuhn,
professor of epidemiology, both from Columbia University, New York in 1995 – this
was the beginning of a highly productive and rich collaboration. Tom and Louise have
been instrumental in my career development, as mentors, teachers, colleagues and
friends and I am delighted that Louise Kuhn is here tonight. I owe them both a huge
debt of gratitude.
Tom approached our gynaecology oncology unit, which at the time was headed by
Professor Basil Bloch, who had a world renowed reputation as a gynae oncologist,
with a novel idea: in order to initiate or sustain screening programmes in poor
countries we needed to find an alternative screening tool to the Pap smear. So Tom
proposed that we design a study to screen 3000 women with four different tests in
order to compare the efficacy of the Pap smear to three other alternative tests: the
simplest, known by many as the vinegar test or visual inspection, was to train a nurse
to wash the cervix with vinegar and look for what we call a ‘white lesion’ using a
bright light. It had been known since the 1930s that 5% acetic acid (the ordinary white
vinegar that you can buy at Pick and Pay) causes cervical cancer precursor lesions to
turn white. This test which is low tech and cheap, did not require any laboratory
infrastructure and was able to give the patient an immediate result.
The second test was a laboratory based molecular test to test for the presence of a
virus known to be a causative agent for cervical cancer. The virus is known as the
human papillomavirus or HPV – this is a picture of this very pervasive virus. It is also
known as the ‘wart virus’. To date over 100 types of HPV have been identified – HPV
infects skin in all parts of the body and certain types are responsible for causing the
warts one gets on one’s fingers as a child. Actually my grandmother told me finger
warts developed when a frog wees on you – I guess adults don’t know everything.
Forty types of HPV are known to infect the genital tract of both men and women, of
which about 15 (known as high-risk types) have been consistently associated with
cervical cancer. In fact, these high-risk types have a stronger association with the
development of cervical cancer than does smoking with lung cancer. We hypothesized
that because of the strong causal association with cervical cancer, detecting the high-
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risk types of HPV would enable detection of cervical cancer precursors, which was
the rationale for using HPV testing as an alternative screening test to the Pap smear.
The third test involved washing the cervix with vinegar and taking a photograph of
the cervix with a specially adapted camera. This is a photograph of the cervix
showing a ‘white lesion’ which would only become visible after applying acetic acid.
We compared these three tests to the Pap smear. Women who had an abnormality on
any one of the tests were referred to me within 2 – 6 days of being screened for a
procedure know as colposcopy. The colposcope illuminates and magnifies the cervix
and allows a detailed examination of the cervix and for us to perform histological
sampling, which is the gold standard for diagnosing a cervical cancer precursor. We
compared the screening test result with the findings at colposcopy and histological
sampling.
I had had very little research experience at the time, and in 1996, it was a huge
challenge to set up a community based research project, especially in Khayelitsha.
There was a great deal of suspicion about research, with many community members
complaining to us that research projects had used them and then withdrawn services
once the researchers had obtained their data, and this had generated considerable
anger. We spent 6 months informing the community about the project and ensuring
the buy-in from many stakeholders, including traditional healers, primary health care
clinics and Community Health Forums (I had to attend a number of mass meetings to
explain cervical cancer prevention – which as you can imagine was not so easy – any
reference to the genital tract usually provokes some kind of aberrant reaction in
people, no less so at a mass meeting with men and women, using language like mouth
of the womb, vulva and vagina – all those ‘down there’ bits!!). Our first clinic used a
converted mobile caravan provided to us by the Cancer Association of SA, which was
equipped with a colposcope and all equipment I needed to treat the cervical disease.
The analysis of our data on the first 3000 women screened formed the basis of my
PhD which I was awarded in 2000, having started writing it in 1998. Tom, Louise and
Robbert Soeters went way beyond the call of duty in shepherding me through the
rigours of scientific analysis and writing – remember I was trained to do
hysterectomies, not to analyse data! I had to learn everything from scratch and it was
an extremely arduous journey for all of us, albeit ultimately a rewarding experience.
Since those days we have progressed from study to study and to date we have
screened over 16 000 women living in Khayelitsha, published numerous papers in
international journals and provided evidence that there are a variety of cheap, safe,
acceptable and feasible alternatives to the once revered, and now depreciated Pap
smear. The findings of our work have been used to adopt alternative screening
programmes in many developing countries and have been replicated in a number of
large seminal studies.
In addition we developed a range of educational materials, all based on a bottom-up
approach of listening to and learning from our patients. We created a soap opera
called Nokhwezi’s story which we developed into a photocomic, a radio play and a
video. Later, we investigated how women really felt about having to undergo a
gynaecological examination. This was an interesting exercise for initially most
women repeated the conventional attitudes to the genital tract – you know, that area
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‘down there’, decent Xhosa women do not like to expose their genitals to strangers,
oh that is such a shameful part of my body, and questions to me about ‘how can you
do this dirty work? There must be something wrong with you!’. We then ran
workshops with the women and with a different atmosphere and on reflection many
women changed their stance, and began to speak of the genital tract with reverence.
As one woman put it ‘….even Nelson Mandela was born through the vagina – it is a
sacred pathway….’ And this ladies and gentleman was long before the Vagina
Monologues! This led us to invite a woman praise singer to create a poem on the
‘sacred pathway’ and to participate in an educational workshop we held at Site B
community centre. Here is an excerpt of what she wrote:
‘Vagina is the flower of the nation, it looks like a strawberry, it looks like a beautiful
girl, it is reddish in colour and looks like an apricot. The womb is the cave of life
which produces life…..kings, queens, presidents of parliament and graduates come
from the cave of life…’. When she performed her poem, the hall erupted in joy and
affirmation. It was for me a salutary moment for it was so clear that the veil of
prejudice is just that … a veil, and by creating an environment in which women could
freely express themselves, the ‘inherited’ perceptions of the ‘dirty genital tract’ were
quickly discarded.
While we were busy with our screening study, we embarked on another study of
cervical disease in HIV infected women – we recruited 400 women and are still
following them 5 years later. This study will give us invaluable data on the natural
history of cervical disease in HIV infected women, and in particular will enable us to
formulate and evidence-based cervical cancer screening policy for HIV infected
women. In order to perform this study we created a clinic at Nyanga Primary health
care clinic, where we have provided a comprehensive gynaecological service to our
patients and in fact, to many other patients who are not enrolled in our research.
Our work in cervical cancer prevention, embodies many of the values I cherish – it is
community based, our research patients have benefited directly from our research not
only because they were provided with health care way beyond what they would have
received ordinarily, but we were researching a disease that is highly prevalent among
the women who participated in our studies. Our work has been generalisable to other
similar, low resource settings and the evidence we produced of the effectiveness or
not of our various interventions has been used to set up similar demonstration projects
in Africa, Latin America and Asia. We placed great emphasis on the training and
upgrading of the skills of our research staff. We trained doctors, nurses, project
administrators and community health workers and today I have the most outstanding
and irreplaceably brilliant research teams. They are all here tonight and I salute you
all with the deepest pride.
As our credibility and funding increased (we began with $40 000 per year in 1996 and
in 2006 this had increased to US$750 000 per year), our projects became bigger and
more complex, culminating in a large randomised controlled trial with a three year
follow up of nearly 7 000 women, which we completed in December 2006 and have
already published in JAMA. We progressed from the caravan to shipping containers
which proved to be highly functional and very cheap to establish. We have recently
upgraded the containers in anticipation of beginning the first trial in Africa of the new
vaccine against the Human papillomavirus. The HPV vaccine, which will shortly be
licensed in South Africa, is one of the greatest medical breakthroughs of the last
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century and it is projected to prevent at least 70% of cases of cervical cancer, as it will
immunise girls and women against the two types of HPV, types 16 and 18, that are
most commonly associated with cervical cancer . We hope to test the efficacy of the
HPV vaccine in HIV positive women and as a research team we are delighted to be at
the cutting edge of evaluating and implementing the vaccine. We are also
collaborating with colleagues from Leiden University in the Netherlands, in a project
known as the Female Cancer Programme – their leader, Dr Lex Peters is here tonight,
welcome Lex – we are planning a large cervical cancer project for the Eastern Cape
with funding of approximately a million Euros. So our work in cervical cancer
prevention continues…..
Another aspect of our work has been in sexual violence. I cannot bear to join the
‘crime whine’ but we all know that South Africa has a very high rate of rape and
sexual violence. In Cape Town approximately 300/ 100 000 women report rape to the
South African Police Services per year. Women are overwhelmingly the victims of
this violence, the consequences of which are profound and long-lasting. Together with
my friend Lorna Martin who is the professor of Forensic Pathology at UCT, we
designed a sexual assault examination form in the mid 90s, which was intended to not
only integrate the forensic and clinical examination of sexual assault survivors, but
also to be the idiot’s guide for medical officers staffing emergency rooms whose job it
would be to evaluate and examine survivors of sexual assault. During the apartheid
era, women who were brave enough to report rape, always a terrifying and harrowing
experience, were taken for a forensic examination to a district surgeon and then
referred to a separate health system for treatment. For example, treatment to prevent
the acquisition of sexually transmitted infections, pregnancy prevention and injuries.
With the advent of AIDS, the need for urgent and expert medical attention for raped
women, men and children, became ever more urgent.
We took our sexual assault protocol, which was a 14 page document which included
giving anti-HIV medication to prevent HIV transmission, to the Western Cape
Province. We were fortunate enough to meet with a very dynamic woman, Leana
Olivier, who decided to take our protocol through to implementation. Leana was an
incredible example of ‘can – do’ attitude and of how motivated, passionate
individuals can make a huge difference. She took the protocol to all relevant
stakeholders, and after 4 years of consultation and input the protocol was formally
adopted by the Western Cape Government in December 2000. This document, so
simple in appearance, represents hundreds of hours of work. During the process Leana
assembled a team of us to train doctors, nurses, police and justice officials in the use
of the protocol. I know that I was part of training over 300 people in the Western
Cape. It was during this time that the National Prosecuting Authority funded a onestop rape centre, based on our protocol, at G F Jooste, called the Thutuzela Rape
Centre. We also set up a one-stop rape centre at Groote Schuur Hospital and we
collected detailed data on over 1000 cases of rape reported to the two hospitals. While
the provision of care and services to sexual assault survivors remains inadequate and
there is much work to be done, we have at least developed a model that we know
works.
Since we were liberated from apartheid there have been many very positive
developments in the health sector, and particularly for women. For instance, the
prioritisation of primary health care has provided services to thousands of poor South
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Africans, who previously had no or very limited access to health care. Health care for
poor women and children less than 6 years of age was made free. The Choice of
Termination of Pregnancy Act has ensured that South Africa has one of the most
liberal abortion laws in the world and deaths from backstreet abortions are a rarity as
a consequence. The Domestic Violence Act has given women who are victims of
intimate partner violence many more rights. Exactly a week ago the new Sexual
Offences Bill was passed that will, once implemented, greatly improve the handling
of sexual assault cases. In addition, we have national policies on the medical and
forensic management of sexual assault, and one-stop rape centres have been set up in
many parts of the country. We have a policy for the prevention of cervical cancer that
the government is now prioritising. HIV and AIDS are finally receiving the attention
they deserve. Despite many challenges I do believe that the health service overall that
we offer to patients is better and more equitable today than it was during apartheid.
Our major problem is not policy – we are in fact rather brilliant in that arena - our
problem is implementation. The gap between policy and implementation is rather
terrifyingly wide, but I do believe we have the vision, the will and the capacity to
develop a unique African model of health care, which is patient centred, holistic and
dynamic. Reaching this goal is not just the government’s responsibility. This
responsibility belongs to all of us.
As Margaret Mead said, ‘Never doubt that a small group of thoughtful committed
citizens can change the world, indeed it is the only thing that ever has.’
There are many special people to thank for walking with me in my life’s journey.
Almost all of you are in this audience and you know who are. My most important and
deeply cherished travellers have been my family. My heart is filled to overflowing
with gratitude and love.
I would like to dedicate this inaugural lecture to my late brother Alan Hugh Denny,
who I know is here with us in spirit and love.
I thank you for your attention.
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