Amandla!—Power to the
people
by Charles E. Clifton
The motherland. Africa takes
you there and then some. I can’t speak for all the brothers
and sisters of African descent who find themselves scattered
about the Americas, however, the opportunity to attend the
13th International AIDS Conference also represented a homecoming
of sorts. A return to where it all began for my ancestors,
for all our ancestors for that matter.
I knew before traveling to
Africa that the rates of HIV infection are the highest in
sub-Saharan Africa. Nevertheless, until you actually come
face-to-face with the reality of AIDS in Africa I don’t
believe one can actually comprehend the devastation HIV/AIDS
is causing.
• 24.5 million adults and
children living with HIV in sub-Saharan Africa (out of 34.3
million worldwide)
• 4.2 million South Africans
living with HIV
• 500,000 AIDS orphans
in South Africa
• 550,000 newly infected
South Africans each year
While in Capetown, I visited
the Langa township. In this community constructed for 80,000,
but currently home to 250,000 people, I saw the legacy of
apartheid (abolished in 1994) and learned of the devastation
of AIDS. As I examined the numbers, statistics and figures
I wondered: How did this happen? What can be done at this
point? Slavery, colonialism, apartheid and now AIDS—what’s
a continent to do to get a break? However, despite hundreds
of years of oppression and with less than ten years of freedom
and democracy, I also felt from these people a willpower to
triumph over adversity.
Against this backdrop, for
the first time, the world traveled to a developing nation
to renew its International AIDS Conference. It could not have
come at a better time. The primary focus of the 13th International
AIDS Conference held in Durban, South Africa was to address
questions surrounding the explosive rate of HIV infections
in sub-Saharan Africa.
In the southern cone of the
continent, at least one adult in five is living with HIV.
One in five. And for the most part there is no incentive in
most of Africa to test for HIV. There is no protection of
individual rights; access to treatment and care is basically
nonexistent in most impoverished and rural communities. Not
including funds required for antiviral treatment, it is estimated
that upwards of three billion US dollars would be needed every
year to support effective prevention programs that would include
treatment of mother-to-child transmission, condoms, educational
programs, treatment of sexually transmitted diseases and blood
safety programs. Where do you begin to overcome such insurmountable
odds?
South African HIV and AIDS
community leaders and activists used this once-in-a-lifetime
opportunity to demand a new, diverse and globalized response
to an epidemic that is producing 1,700 new infections per
day in South Africa. For treatment advocates the conference
was not only an opportunity to break the silence on HIV/AIDS
(the theme of the conference), but also a chance to remind
visitors of the recent history in the country. The people
of South Africa built a resistance struggle based on grass
roots activities that empowered a population of ordinary men,
women and children with the strength and courage to overthrow
apartheid. They know that their struggle to implement effective
measures against HIV will require the same level of commitment
and courage.
Community Indaba—“Coming
together, sharing”
In an attempt to understand
how activists in South Africa are dealing with HIV/AIDS, I
decided to follow the community and activist track of the
conference. It’s gonna take a village, a community and
then some—Indaba. The theme of the Community Indaba was
“Community Voices—a Call to Action.” This conference
was an opportunity for South Africans to directly communicate
and learn from community activists and colleagues long engaged
in struggle for better treatment and care for HIV and AIDS
related illnesses. Shaun Mellors, an HIV positive South African
AIDS activist, in a passionate voice that generated shout
outs of solidarity from the audience, Amandla! (power to the
people), stressed the need for breaking the silence on “inclusion”
and “accountability.” He challenged people living
with HIV to expand their notion of community in this struggle
and create a movement of solidarity that is inclusive of infected
and affected populations. Mellors challenged all South Africans
to take responsibility for the country’s current situation
in the AIDS epidemic, to be proactive in this struggle and
in a search for local and global solutions.
The highlight of this opening
session was the three first-person narratives: an HIV positive
gay man from Australia, an HIV positive black mother from
South Africa and an HIV negative drug user from India. Each
individual spoke of how HIV has impacted their life, strengthened
their commitment to the struggle and gave them the resolve
to break the silence on HIV and AIDS. Musa Njolo, an HIV positive
mother of an eight-year-old boy, was visibly frustrated and
angered by the state of AIDS politics in South Africa. Njolo
blasted government policy that continues to severely restrict
treatment and care to people living with HIV, especially poor
women and children.
Statistics released by the
Kaiser Family Foundation and the American Medical Association
show that in South Africa there was a 34% rise in HIV infected
pregnant women in 1998 and a 64% rise in prevalence in pregnant
teenage girls. The refusal of the government to support the
use of anti-HIV treatment during pregnancy, proven successful,
is in Njolo’s words, “a government that does not
want to extend the life of a child whose mother will eventually
die of AIDS.”
Break the silence on the
unequal distribution of wealth and power, on political inaction,
on gender inequality, on access to care/treatment, on options
to educate impacted communities, on information dissemination
and tools of negotiation, on discrimination, racism and human
rights abuses.
Community activists take
to the streets of Durban
“Cheap AIDS drugs save
lives. Affordable treatment NOW!” “Let me start
by accepting what has recently become less obvious,”
Winnie Madikizela-Mandela declared at the AIDS protest march.
“AIDS exists and HIV causes AIDS.” Winnie Madikizela-Mandela,
Pan-Africanist Congress MP Patricia de Lille and Anglican
Archbishop Njongonkulu Ngundane joined Treatment Action Campaign
(TAC), ACT UP (the old school version!) and Health GAP Coalition
in a march in Durban to protest government and pharmaceutical
inaction. “If we struggle against HIV/AIDS the same way
we struggled against apartheid, we can turn back time.”
Mrs. De Lille added, “the drug companies must know that
HIV positive people are a powerful force.”
TAC members and people living
with HIV/AIDS (PWHAs) are frustrated and rightly so by what
appears to be the complete absence of a comprehensive HIV/AIDS
care and treatment strategy for South Africa. Activists and
community organizers used the demonstration to bring attention
to the need for the South African government to make affordable
medicines, including anti-retroviral drugs available to PWHAs.
They demand the immediate distribution of Viramune (nevirapine)
and AZT to pregnant women with HIV. AIDS activists ask: If
the government’s core focus is prevention, why doesn’t
it try to prevent all these children from becoming orphans
in the first place by providing anti-retroviral treatment
to keep parents alive and unborn babies HIV negative? They
promise to increase pressure on the government including,
if necessary, demonstrations of a magnitude not seen since
the struggle against apartheid.
TAC organizers are also critical
of major international pharmaceuticals and UNAIDS. International
activist group ACT UP maintains that the drug pricing policies
are outrageous and appalling. Mark Milano, speaking on behalf
of ACT UP and acting in collaboration with TAC, stated that
“lower drug prices were promised for a long time with
no results” from either the pharmaceutical companies
or action on the part of UNAIDS. Activists went on to criticize
pharmaceutical companies’ promotional spending practices
and donations to poor countries. Dr. Peter Piot (UNAIDS) estimates
that $3 billion is needed annually to effectively fund HIV
prevention programs in Africa. In a separate presentation
at the AIDS 2000 Conference, Dr. Richard Laing, School of
Public Health at Boston University, reports that U.S. pharmaceutical
companies allocated $5.9 billion to promotional spending in
1998. With millions of people dying worldwide, how is that
level of promotional spending justified?
The solution to the treatment
dilemma in South Africa, according to TAC and ACT UP, is not
donations and promotions, but rather lower prices, the introduction
of generic drugs, and a real commitment to research and development.
During the conference, Viramune producer Boehringer Ingelheim
offered to provide the drug free to the government for five
years. The representatives from Merck and Glaxo Wellcome restated
their commitment to lower prices.
AIDS=death
It is estimated that 95%
of all people living with AIDS in Africa do not have access
to any drugs to fight the disease. South African High Court
Justice Edwin Cameron, a person living with AIDS, in a keynote
address to delegates acknowledged that, “I exist as a
living embodiment of the inequity of drug availability and
access in Africa…I am male…I am proudly gay…I
was born white. My presence here embodies the injustices of
AIDS in Africa.” Cameron stated that he pays $400 a month
for his medication, while 290 million other Africans survive
on less than $1 a day. He said that he is alive today simply
because, when he took ill in 1996, he was able to afford a
combination of the drugs AZT, Epivir and Viramune. He said
that it is “shocking and monstrous” that some should
be living while others are left to die simply because they
are poor. Cameron applauded the Treatment Action Campaign
on its direct action demonstrations and demands for the government
to implement an immediate program of anti-retroviral treatment
to reduce mother-to-child transmission of HIV. Cameron slammed
President Thabo Mbeki’s speech at the opening ceremony
and his “flirtation with those who…dispute the etiology
of AIDS.” Cameron stated that Mbeki’s policy is
unsound and “has created an air of unbelief amongst scientists,
confusion among those at risk of HIV, and consternation amongst
AIDS workers.”
Living with HIV
“LOVE Life—Talk
about it” is the largest and most comprehensive national
HIV prevention effort dealing with the threat of HIV/AIDS
to youth (15—20 year–olds) ever in South Africa.
The campaign using innovative radio ads, TV programming, website,
newspaper and teen hotline is piloted by four local youth
who engage in frank conversations about their lifestyles and
the effect of HIV/AIDS on their lives to bring an awareness
to South African youth.
The truth is that South Africa
is making progress in primary HIV prevention, but there must
be a long-term commitment to frontline intervention in order
to obtain a consistent and significant reduction in HIV in
youth, as obtained in Uganda. In Uganda, successful peer-education
prevention programs such as “True Love” (monogamy
in marriage) have cut the HIV infection rates in half among
youth.
A few times during the week
the mounting reports of deaths, rates of infection and the
sheer lack of care and treatment of the HIV/AIDS epidemic
in Africa dismayed me. What could I do to make sure that this
struggle is not forgotten? How could I help facilitate change?
More than once I sat dumbfounded, contemplating a situation
that felt hopeless, in the comfort of my hotel (29 floors
above the harsh realities of Durban overlooking the stunningly
blue waters of the Indian Ocean). And as I pondered my own
existence, I knew that in a few days I would be on a plane,
on my way back to the U.S. and a healthcare system, which
though not perfect is accessible to the vast majority.
Another South African group
I spoke with, the National Association of People Living With
AIDS (NAPWA), made me remember how and why I became involved
in the HIV/AIDS movement. This conversation forced me to reexamine
my way of thinking about the current situation in Africa.
Our talk was devoted to the ways that affected communities—with
little or no financial resources—come together and create
workable solutions to HIV/AIDS. Can anyone remember how the
gay and lesbian communities in the U.S. responded to the disease
in the 1980s? Have you noticed the change in how African-American
and Latino/a communities are responding to HIV today? Grassroots
organizing.
A woman involved with the
Sinosizo home-based care program, who I spoke with briefly,
described the situation of children aged nine to 14 who are
now the primary caregivers for their parents dying of AIDS,
as well as for younger brothers and sisters. Many of these
households have no income. Children are forced onto the streets
to beg, steal and trade sex for money and/or food. Most are
malnourished. There are no beds in many homes. Parents are
often sent home from the hospital two or three days before
death and often children are the only caregiver available
to cleanse and lift their parents to and from toilets. In
addition, these children have to cook on open fires, carry
smaller siblings around on their backs, wash clothes and fetch
drinking water from long distances. The Sinosizo provides
home-based training for children, not because they believe
children should be caring for dying parents, but rather because
there are no other options available.
There is a township not far
from Durban where a group of women have created an orphanage
to ensure that the children orphaned by AIDS have at least
the basic necessities of life. The community center was created
after it became apparent that AIDS affected the majority of
the households, and that there would no one left in these
homes to look after the children. The center is entirely dependant
on volunteers, who take responsibility for making sure the
children are cared for. They try to provide one meal a day
and some basic education, but mainly the center is a place
for the children to play and sleep.
The significance of a support
system for “AIDS orphans” in Africa goes beyond
our conceptualization of HIV and AIDS related deaths in the
United States. In South Africa there are nearly 500,000 AIDS
orphans and estimates indicate that these figures will more
than double by 2005. These children come from homes where
virtually every potential caregiver and/or provider is sick
or has died from AIDS and/or the child was abandoned because
of the stigma and discrimination associated with AIDS. Without
the protection of family, children lose even their basic human
rights. These women and NAPWA are breaking the silence on
AIDS; dealing with it openly and honestly as a community;
and using their African culture and family traditions to find
solutions for the people affected and infected. Isn’t
that what gays and lesbians did in the 1980s, and what communities
of color are doing today? No, it was not and still is not
perfect, but if we waited for perfection—1,700 new infections
daily.
HIV and violence against
women
Violence against women remains
one of the most overlooked factors driving the HIV pandemic.
An address by Dr. Geeta Rao Gupta, International Center for
Research on Women, focused on gender, sexuality and heterosexual
transmission of HIV. Gupta noted that the cultural specific
constructs of gender roles, norms and expectations in many
societies have positioned men in positions of power and in
control of female sexuality and reproductive rights. Because
men operate from an absolute position of power in these societies,
they dictate sexual practices, the number of and choice in
sexual partner(s), who obtains sexual pleasure and when, and
who controls procreation. The 5 P’s of gender relations
are power, practices, partner, pleasure and procreation. Gupta
maintains that the unquestioned image of masculinity creates
notions of male invulnerability and self-reliance. Consequently,
men do not acquire the necessary information to reduce their
own risk for HIV. They engage in multiple sexual relations,
while maintaining sexual domination over women and deny sexual
activity with other men. In most societies there is no discourse
on sex and sexuality. All of these factors place heterosexual
women at a higher risk for HIV than their heterosexual male
partners. Gupta advocates for the following changes in gender
relations: 1) decrease in gaps in education 2) improved economic
access for women 3) improved political participation for women
and 4) decrease in sexual violence against women. She maintains
that demanding changes in gender roles does not compromise
multi-culturalism and diversity. Gupta concluded that a society
that empowers women does not disempower men.
Other studies from countries
in southern Africa confirm that various forms of violence
against women are practiced, including physical/sexual abuse
and rape. The fear of violence or the experience of violence
may interfere with a woman’s decision to seek voluntary
testing and counseling, as well as asking their sexual partner
to use condoms. All of these factors place women at a higher
risk of violence (emotional and sexual) as well as increasing
their risk for HIV when forced into unprotected sex with partners,
husbands and trading sex for money with multiple partners.
One day, the young girl (maybe
18 years old) who works in the store I stopped in every morning
to buy bottled water said hello. She wanted to know about
the “AIDS Conference.” What is HIV? How do you know
if you have it? What does AIDS look like? She had so many
questions. I wished South African president Thabo Mbeki could
have heard her. As simply as I could I explained the importance
of HIV testing, treatment and care. However I could see that
she was still confused. No one had ever explained HIV to her
or her friends.
To treat or not to treat
The general consensus to arise
during this conference was that the costs of medicines are
and will continue to be harmful to the improvement and development
of adequate healthcare infrastructures in developing nations.
Can we simply dismiss treatment of HIV/AIDS in Africa on the
grounds of non-existent infrastructure? I think not. As one
delegate asked: “Where on earth is there no healthcare
infrastructure?”
It is true, the majority
of the continent suffers from a dilapidated, outdated, and
over-utilized healthcare system, but it does have healthcare.
It can be changed. It can be improved. These things must happen.
However, with the prevailing pricing structure in the pharmaceutical
industry there exists little or no incentive for changes to
current healthcare system in countries such as South Africa.
Why improve the system if you can’t afford the drugs?
South Africa has a first-world private sector and within that
sector there exists a first-world healthcare system. Where
is the debate that questions a two-tier health care system?
Why is the focus simply directed at what is not available?
Why aren’t we questioning the inequities of the existing
private healthcare sector and a market that forces pharmacists,
physicians and HIV specialists to join the private sector
in order to practice, rather than providing public healthcare
services? An argument that dismisses the possibility of treatment
and care due to cost is a decoy of pharmaceuticals who refuse
to address the high cost of anti-retrovirals and a deceptive
ploy of a government that refuses to address its own mismanagement
and lack of leadership in the HIV epidemic.
On the other hand, “doing
the right thing” can be complicated. As Phill Wilson
of the African American AIDS Institute (U.S.) stated, “there
is an obligation not to harm…as we enter into different
countries and cultures…in regards to resistance and compliance.”
Do we [developed nations] want to be seen as “pill pushers”?
What are the ramifications if we jump the gun? Is distributing
pills too narrow of a focus when it comes to care and treatment?
What about testing, monitoring and counseling? An equitable
treatment program will require safe, effective and wide distribution
of anti-retroviral medicines. People living with AIDS and
those providing care in Africa will need to monitor treatment
of opportunistic infections, plus provide psychological support
and financial protection (from illness and disease). We also
need to support treatment that includes clinical and laboratory
competence, and assurances that a continuous drug supply will
be available. What will happen if we get these nations “hooked”
and additional medications are not available when changes
in drug-regimens are required? Who is going to deal with treatment
failure, toxicity, development of resistance, and the possibility
for increased treatment access inequalities? It’s not
perfect, but if we wait for perfection—550,000 new infections
every year.
So it’s agreed that
the cost associated with anti-retroviral therapy should be
decreased; an equitable and reliable distribution system needs
to be implemented; access to treatment and clinical support
will always be a problem, as will poverty (food), sanitation
(water supply), and homecare. But with six new infections
every minute in South Africa, do we wait for the perfect drug
and the perfect system? Absolutely not. The infrastructure
system will be improved through doing, not by waiting.
Amandla!—Power to
the people
Nelson Mandela, the founding
father and first president of South Africa’s democratic
era, closed the 13th International AIDS Conference. Mandela
was released from Robben Island Prison in February 1990 after
serving 27 years. He belongs to the nation. His work is the
work of South Africa. In his address, Mandela eloquently and
indirectly called for an end to the recent conflict between
President Mbeki and AIDS experts around the world.
“Now, the ordinary
people of the continent and the world,” Mr. Mandela said,
“would, if anybody cared to ask their opinions, wish
that the dispute about the primacy of politics or science
be put on the backburner and that we proceed to address the
needs and concerns of those suffering and dying.” Mandela
never mentioned the issue by name, however everyone in the
audience knew exactly what he was talking about, Mbeki’s
association with HIV denialists. “In the face of the
grave threat posed by HIV/AIDS,” Mandela continued, “we
have to rise above our differences and combine our efforts
to save our people. History will judge us harshly if we fail
to do so now, and right now.”
With his white hair shining
in the spotlight, Mr. Mandela looked and sounded like a prophet.
He spoke to nearly every single issue I (and many thousand
in the audience) had hoped for Mbeki to address at the opening
ceremony. Mandela mentioned safer sex, abstinence and condom
use as necessary steps to prevention “about which there
can be no dispute.” And in a list of “bold initiatives”
that are necessary in the struggle against HIV/AIDS Mandela
included “large-scale actions to prevent mother-to-child
transmission.” The South African government thus far
has not approved a national program to prevent HIV infection
through anti-retroviral treatment of mothers and newborns.
Drawing cheers and applause
from nearly every completed sentence, Mr. Mandela condemned
ongoing discrimination and stigmatization of people living
with HIV/AIDS. He called for an aggressive treatment of opportunistic
infections and for assistance to families and communities
devastated by the disease. “We have a duty to give support
and love to people who have acquired this disease not because
of any bad behavior on their part,” stressing, “especially
children.”
Charles E. Clifton
is the new editor of
Positively Aware and
Director of Communications for Test Positive Aware Network.
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