From Programs to Policy: Paradigm Shift

to the XVI International AIDS Conference
Plenary Session
By Louise Binder
Metro Toronto Convention Centre
Toronto, Canada
I want to begin with a word of thanks to the organizers for your invitation to this plenary session on women, girls and HIV.
I dedicate this presentation to the memory of my friend Evan Ruderman.
As the only HIV + Canadian woman among this year's group of plenary speakers, I am honoured by your invitation and moved by its obligations.
I want to speak with you about power...
the driving force behind the HIV epidemic today.
Where power resides, the virus recedes.
Where it does not, the virus thrives.
Today, the virus is thriving.
Of course, the power lies where we know it lies...
With adults... men... white people... people from the North... rich people... straight people...
The designers and occupants of the mainstream whose interests are satisfied at the expense of those who are not.
The brokers of power.
Of course, it comes as a no surprise that HIV is thriving in women, young people, drug users, prisoners, sex trade workers, people from the South, non-whites, gays, transgendered, indigenous and Aboriginal people in Canada, First Nations, Inuit and Metis people.
Of course, this is not new.
What is new, however, is the lethal impact of this exercise of power on the massive HIV pandemic... and its catastrophic effects... worldwide... on women and girls.
This planet is now engorged with the bodies of millions of them who have died because of HIV.
For many of them, death was a relief and a release...
Because, before their deaths, they had been raped... beaten... sexually abused... emotionally abused... starved... worked beyond exhaustion... sold into slavery... forced into the sex trade... imprisoned... disowned by their families... and deprived of their children.
Many of those who died were just girls... robbed of a childhood, an adolescence, and finally life itself.
Not that life would have held much for them.
They would likely not have received an education... a fairly paid job.. inheritance rights... property rights... or reproductive health choices.
Even marriage and monogamy are no protection against this disease.
Some were stoned to death.
Others committed suicide rather than face the social ostracism, violence, abuse and unrelenting despair of their lives.
I will never forget the shock of receiving a telephone call and learning that my wonderful, bright, funny HIV positive friend Candace had just jumped from the seventeenth floor of her apartment building right here in downtown Toronto.
We all bear witness to the grim reality of this devastation in Sub-Saharan Africa and the Caribbean... in Southeast Asia... in Latin America... and in Eastern Europe.
And let's be clear... we have no reason to be smug or sanctimonious in North America.
Infection rates for women here are, and have always been, rising.
Look at rates among women in Canada who are from countries where HIV is endemic, including Africa and the Caribbean.
In the U.S., HIV is the leading cause of death among African-American women aged 25 to 34.
Hispanic-American women also bear the brunt of this disease.
The infection rate among Aboriginal women and girls in Canada is appalling. Women comprise 46.6% of new infections in Aboriginal people.
Most mind boggling is that of Aboriginal women who die of HIV, 40 per cent die without ever accessing treatments in a country where these treatments are available.
These are the consequences of the imbalance of power in the world.
Yet we women know full well that we are not merely the victims, vessels and vectors of disease we are often portrayed.
On the contrary.
We are proud survivors and leaders in our communities.
We are not powerless.
For power finds sustenance in the courage of conviction... in the determination to right a wrong... and in the willingness to swim upstream.
In fact, staring in the face of massive devastation and injustice, as we are, women have been at the forefront of some of the most creative, innovative, successful initiatives designed to turn the tide of this terrible epidemic.
There are scores of examples of this.
I have three I want to share with you today.
In 1991, a woman from Uganda stood at an international AIDS Prevention Conference and asked this question:
"If we can put people on the moon, why can't we make something that women can use to protect themselves against HIV?"
Good question.
An American community activist... Lori Heise... wanted to find a good answer.
She discovered that Dr. Zena Stein of Columbia University had already put the wheels in motion by calling for a "virucide."
So Lori and a small group of determined women went to work... putting women-initiated HIV prevention on the agendas of the UN Population Council and the World Health Organization. The first research funding for an "intravaginal virucide" became available in 1992.
The next year, Lori helped form the Women Health Advocates on Microbicides.
Within five years, they had launched the Global Campaign for Microbicides.
The Alliance for Microbicide Development was founded in 1998 and the International Partnership on Microbicides in 2002. The IPM has raised over 170 million dollars from 8 governments, 2 foundations and multilateral organizations including the Bill and Melinda Gates Foundation, the Rockefeller Foundation, the European Commission and the World . I am proud to say that Canada was one of those donors.
In spite of the reluctance of the pharmaceutical industry to invest in microbicides, there are now 25 candidate microbicide trials planned or underway... 5 in Phase III with over 27,000 women in 19 countries.
Now, that's power.
The power to potentially save 2.5 million lives over three years.
Because of one woman asked one question...
And determined women took real action.
Here's a second story of courage and leadership by women.
As a result of the sectarian conflict in Rwanda in 1994, 250,000 women were raped as a tactic of war and genocide.
More than two-thirds of the Rwandan rape survivors, mostly widows, were HIV positive, and had no access to antiretroviral drugs.
So they decided to do something about it.
They contacted two American women, one a journalist and one a doctor, who had formed Women's Equity in Access to Treatments.
Together they helped form a joint public-private partnership under the national AIDS Plan, called the Rwanda Women's Treatment Access Initiative.
They provided technical assistance, training, education, and a range of medical services to women, men and children all aimed at building the capacity of local non-governmental organizations and their clients to deliver services themselves.
Government and non-government partners provided crucial services, including trauma counseling... transportation... antiretroviral drugs... HIV testing and counseling... monitoring... paediatric care... income-generation programs... and food.
Recognizing poverty, nutrition and safety as huge barriers to successful treatment, a so-called "Chicken Fund" was implemented.
It supplied several hundred women who were starting antiretroviral drugs with a chicken and two roosters...
Providing eggs for protein, as well as a product that could be sold to buy food.
The women also received training in food production and income generation... to have a sustainable means of supporting themselves and their families.
The program provides free comprehensive HIV care to more than 4,000 people, 45 per cent of whom are genocide rape survivors.
Everyone who needed antiretroviral treatment has received it... with more than a 90 per cent adherence success rate.
Three mobile teams provide HIV testing to 1300 people per month, in partnership with 24 community non-governmental organizations.
A national peer education and training program provides self-empowerment tools for HIV positive people and their families to become leaders and community outreach workers.
All of this because women survivors sought a solution...
And two women took real action to help them realize it.
Here's the third story.
It has to do with South Africa's rural Limpopo province... where poverty and unemployment are widespread...
And where the need to improve the economic well being and self-empowerment of women is seen as a means to help reduce violence against women, including rape, by their intimate partners.
This, in turn, reduces HIV infection.
The Intervention with Microfinance for AIDS Gender Equity Study... or IMAGE... is led by a team including Julia Kim of the Rural AIDS and Development Action Research Program...
In collaboration with the School of Public Health at the University of Witwatersrand and the London School of Hygiene and Tropical Medicine.
The IMAGE Study combined a microfinance poverty alleviation program with participatory gender and HIV training.
The microfinance portion was handled by the Small Enterprise Foundation... a South African non-governmental organization with more than 30,000 active clients.
To help minimize the prospect of conflict within households, and to advance women's self empowerment, IMAGE created a learning program called Sisters for Life.
It included training sessions on gender roles, cultural beliefs, relationships, communications, domestic violence and HIV.
It also encouraged broader community mobilization to engage both men and youth.
And the outcomes are amazing.
After two years, the risk of intimate partner violence was reduced by 55 per cent.
Participants were better able to challenge the acceptability of violence... to expect and receive better treatment from their partners... to leave abusive relationships... and to raise public awareness about intimate partner violence.
These benefits also reached young people at home, resulting in greater openness and communication about sexuality and HIV.
Self confidence was so enhanced that participants organized 40 village workshops... 16 meetings with leadership structures... five marches... two partnerships with local institutions... and they formed two new village committees including an anti-rape committee.
All because a group of women risked their lives by daring to speak out about violence and to seek support for a solution...
And one woman took action to help them find that solution... and so much more.
What do these stories teach us?
First, that while the problem is profound and much time has been lost, it is not insurmountable.
In order to sustain successful approaches to the problem, empowerment strategies are essential...
And they are more likely to be successful if they are integrated within macroeconomic and cultural strategies aimed at creating improved equity.
Second, they teach us that the oft-repeated myth that culture and religion are insuperable barriers to successful HIV programs is nonsense.
We need enlightened and courageous leaders in every strategic area of this epidemic...
In cultural and religious leadership... in government and politics... in research... in health care delivery... in our communities... and in our families.
Third, the stories teach that projects are successful when they recognize that women's and girls' lived experience leads the way to successful decision making and implementation.
The reality of our lives as women is that gender inequality in the economic, social, educational and political arenas directly impacts our ability to protect ourselves from HIV infection... to access prevention services... and to get the care, treatment and support we need for ourselves and those we support.
HIV is the result, not the cause, of these inequities.
So what is the solution for women and girls?
Not mainstreaming. Not ghettoization.
But integration.
These stories illustrate that we must integrate HIV into other health issues affecting women.
Neither can we separate women's health issues from development issues such as education, training, employment and economic security.
We have to work in all of these areas... concurrently, intersectorally, cohesively and urgently... if we are to save some remnants of this and the next generation of women and girls.
So what does this mean in practical terms?
First and foremost, it means the establishment of a multidisciplinary framework at a national level... to develop, implement, monitor and evaluate a comprehensive HIV/AIDS Strategy.
This framework should comprise all levels of government and all stakeholders, including non-governmental organizations... and cultural, religious and community leaders.
Most importantly, women and girls must be at the table, both those living with HIV and those in overrepresented populations in the epidemic.
They would have a veto power over decision making.
This group would have the support to implement its decisions and the resources to do so.
It would report to appropriate elected officials and have direct access to, and support from them.
The Strategy developed by this framework would set specific targets and an urgent plan to achieve universal access to all methods of prevention, diagnosis, care, support and treatment for HIV-related services.
It would also support research for and including, women and girls.
How do we define the elements of this Strategy?
Let me suggest three key elements.
First, we require a universal understanding that the prevention - treatment dichotomy that is often set up is completely false.
These are, in fact, inextricably linked in achieving a successful HIV Strategy.
Neither side of this equation is successful without the other. Both need adequate funding and resources.
In terms of prevention, the strategy must be comprehensive.
It must include targeted education and awareness...
The availability of adequate and affordable supplies of male and female condoms to all who want them...
A harm reduction program for drug users...
Decriminalization of the sex trade...
And an end to violence against women and girls.
It requires generous government funding for microbicide research, starting with an immediate doubling of the present investment to at least $320 million and support for countries to hold trials.
What a prevention strategy absolutely cannot include is the ill-conceived, counterproductive and dangerous policy of ABCs... abstinence, being faithful, and wearing condoms.
To my mind, this is the most blatant example of policymaking by men who know nothing of the context and reality of the lived experience of women and girls.
While we are grateful for prevention funding, donors including the U.S. President's Emergency Plan for AIDS Relief must remove all strings, including the abstinence-until-marriage focus, from their funding approach.
These strings are ropes around women's necks. And they are killing us.
In terms of diagnosis, there must be no universal compulsory testing of any woman or girl, including a pregnant woman or her newborn child, as part of an HIV Strategy.
None of us wants to pass on HIV to our children.
But to target pregnant women is to betray them, while millions of men continue to avoid being tested and avoid practicing safer sex.
No support exists in terms of the violence, divorce, and devastation of these women's lives if they test positive.
It is a coward's way out.
It is not even a good prevention strategy.
In terms of treatment, we must ensure universal and equitably distributed access to the best antiretroviral treatments for women and girls urgently for first, second and third line treatments.
We need paediatric formulations.
Treatment must include drugs for opportunistic infections and for co-infections.
All pregnant woman should have treatment and it must be standard care for them, not just prevention for the child.
In the hardest hit areas, pregnant women have inadequate antenatal care.
Only a tiny fraction of these women have care, and it is generally monotherapy, which is not an acceptable standard of care.
We would have far fewer orphans to care for if we looked after mothers properly.
If we care about orphans, then we have to care about keeping the mothers alive.
We must look past the clinic door to see if we are really reaching women.
And that means more than just doling out a handful of pills.
It means food and water to take the drugs properly.
I have heard many stories of women trading or selling their drugs for food.
Or giving pills to family members.
And it means transportation, and particularly in remote areas.
Many cannot make repeat visits because of a lack of transportation or child care.
We must also provide care and support for women and girls who are unpaid caregivers.
We need proper public health systems everywhere.
Finally, new levels of literacy for women and girls in matters of treatment are absolutely imperative.
Second, an HIV Strategy must be integrated into reproductive health services and rights.
Reproductive health and rights include:
Interventions to reduce perinatal transmission...
Screening and treatment for reproductive tract cancers...
Treatment of opportunistic infections that make pregnancy riskier...
Provision of information on contraceptives and medications used by HIV+ women...
Provision of information about and access to services to prevent and manage unwanted pregnancies ... including safe abortions for all indications permitted by law
and without coercion.
All HIV positive women must be given information and support to have children if they choose...
As well as education on... and support for... exclusive breast-feeding.
Women's rights are human rights.
Reproductive rights are one of those rights.
Women must be protected from violence, coercion and discrimination in the enforcement of those rights.
Donors must immediately remove all conditions for funding women's health that are, in fact, life-threatening.
Violence is a breach of another of our basic human rights... and it is directly related to HIV.
It includes marital rape, legal in many countries... female genital cutting... incest... early and forced marriage
violence related to trafficking... and sexual and economic exploitation.
Women and girls cannot utilize any HIV services and support if they live in fear of violence.
The crisis of violence against women will continue to completely confound efforts to solve the HIV crisis for women and girls without anti-violence laws and policies in place in every country.
And the judicial system must be much more sensitized to this issue.
Do I exaggerate about this violence?
Well, on the planet, at least one in every three women has been beaten, coerced into sex, or otherwise abused in her lifetime.
In Liberia, towards the end of a five-year civil war, half of all of women aged 15 to 70 experienced physical or sexual violence by a soldier or fighter.
In the United States, it is estimated that at least one in three women will be sexually assaulted in her lifetime.
Data from the 1990's indicate that Aboriginal women in Canada were at least three times more likely than non-Aboriginal women to have been assaulted by a current or former partner.
As long as the basic human rights of one woman or girl is trampled on, then none of us is safe.
We, the women on the planet, are not chattels.
No religious, cultural or political imperative is worth the health or life of one woman or one girl.
Third, no enduring changes in the course of this epidemic can occur for women and girls without addressing development issues.
They continue to fuel gender inequity and the power imbalance between men and women, and are compounded by intersecting oppressions including racism, classism and homophobia.
There is a desperate need to ensure a level playing field for women and girls to access social determinants of health such as employment
economic security
and education and training.
Look at the impact of education as a development issue.
Studies show that increased exposure to skills training, literacy and secondary education reduces the risk of HIV infection among women and girls.
Each additional year of school gives girls greater independence
makes them better equipped to make decisions about their sexual lives
and achieve higher incomes.
Nonetheless
worldwide
girls are consistently left out of primary school in far greater numbers than boys.
In one survey of 83 countries in the South, only half of those countries had achieved gender parity in education at the primary school level
and less than 20 per cent had done so at the secondary level.
Every country needs a comprehensive national education strategy
including the elimination of school fees and other costs
that prevent girls from attending and succeeding at school.
In terms of job opportunities, women make up 70 per cent of the world's working poor.
Even if we cannot eliminate poverty, we can alleviate it.
Women must have property and inheritance rights. And they must be enforced.
That means community education
legal resources for women to enforce their rights
and access to community leaders and the judicial system.
Financing women to start businesses including microfinance will assist in moving women out of abject poverty.
By now, you may well be saying to yourself, "I have heard all this before."
I understand.
And I agree.
And therein lies the tragedy.
For many years now, passionate people have been doing what they can to bring awareness to the world about the tragedy of women and girls and HIV
And to demand action from those who had the power to avert the devastation we see before us.
With a few notable exceptions, these calls have fallen on the deaf ears of many who suffer from indifference, neglect, and intentional inaction caused by complete moral bankruptcy.
For many of us, our continuing work flows from an unquenchable rage at the truly avoidable carnage that has been visited on millions of women and girls throughout the world.
Power is the key.
Power is driving this epidemic
and power alone will change its course.
To those with power, I say this.
We seek neither charity nor pity.
This is a practical matter.
You need us.
To run the engines of your economies.
To make and nurture families, communities and societies.
It is in your interest to right the wrong.
So do it.
Every day that you permit the status quo to prevail, failing to challenge or change
You are complicit in mass murder.
To those outside the traditional power circle, I say this.
We must continue to stand together and grow our circle.
Because if one is not safe
then none is safe.
All of us in the HIV community owe a huge debt for much of the progress in research, awareness, treatment and humanity in this epidemic to the gay and lesbian communities.
And I thank them.
Sadly, the same cannot be said for the women's health and feminist movements.
We need that to change.
And I trust it will.
Our conference theme this year is "Time to Deliver."
Time to deliver.
I do not know what timepiece you are using, but mine says that we are decades late with this delivery.
Sadly, there is no way to turn back the clock and bring back the women and girls
nor the millions of Evan Rudermans that we have lost.
Now is definitely the time to salvage some of us before the last words are written on this ignominious chapter of the history of humankind.
It is time to deliver
AIDS Action Now for women and girls.
Thank you. Merci.

