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Past Issues
Volume 16, number 6
June 2002
Contents
African Religious Leaders Urged to
Confront HIV/AIDS
An appeal to action and intervention
Angry in Atlanta
A call for a new era of activism
Talking to Adolescents about Condoms
How old is old enough?
Microbicide Advocates Meet in Antwerp
Action reports from around the globe
Crucial Drug Dropped without Notice
Company's move threatens health and well-being of people with HIV/AIDS
Sick of Excuses
Gregg Gonsalves refutes arguments for inaction
To the African Religious Leaders
Assembly on Children and HIV/AIDS
By Stephen Lewis
Special Envoy of the UN Secretary-General HIV/AIDS in Africa
Nairobi, Kenya, June 10, 2002
Your Eminences:
I feel entirely privileged to address this meeting; it's actually
the first time that I've ever addressed a large gathering of religious
leaders, and I am appropriately chastened by so auspicious an occasion.
What's more, I want to speak with direct and sometimes uncomfortable
frankness, so I appeal to all of you, at the outset, to let the
milk of human kindness flow through your veins and to treat me with
compassion.
Your eminences, the direct impact of the pandemic on children,
in all its aspects, will be set out for you later this morning by
Carol Bellamy, the Executive Director of UNICEF. She is obviously
the right person to do so. For my own part, suffice to say that
there are now estimated to be 13 million children orphaned by AIDS
in Sub-Saharan Africa, with the number almost certain to double
by the end of the decade. In human terms, in the history and literature
of vulnerable children, there's never been anything like it. In
fact, of course, there's never been anything like the HIV/AIDS pandemic.
Comparisons with the Black Death of the 14th century are wishful
thinking. When AIDS has run its course — if it ever runs its
course — it will be seen as an annihilating scourge that dwarfs
everything that has gone before.
What it leaves in its wake, in country after country, in every
one of the countries you represent, are thousands or tens of thousands
or hundreds of thousands or, eventually, even millions of children
whose lives are a torment of loneliness, despair, rage, bewilderment
and loss. That doesn't mean orphan children can't be happy; it simply
means that at the heart of their individual beings there is a life-long
void.
The numbers are overwhelming, the circumstances are overwhelming,
and the needs are overwhelming.
Nor do I intend to quote, in a pretend-learned fashion from religious
texts. It would be presumptuous and foolhardy on my part. That is
your collective world, not mine.
Rather, I would wish to suggest to all of you, as religious leaders
drawn from across the continent, that it is time, it is well past
time, that you summoned your awesome reserves of strength and followers
and commitment to lead this continent out of its merciless vortex
of misery. There is no excuse for passivity or distance. No excuse
for immobility or denial. No excuse for incremental steps when you,
collectively, have the capacity to rally both Africa and the world
if you choose to do so.
The timing could not be better. Let me tell you why, and bare my
most protected inner thoughts in the telling.
I think we may have reached a curious and deeply distressing lull
in the battle against AIDS. Over the last two years, much has happened.
The political leadership of Africa has come alive to HIV/AIDS, conferences
have been held in profusion, from Durban to Addis to Abuja to New
York to Ougouadougou. PLWAs have raised powerful and insistent voices,
the Global Fund has been established, goals and targets have been
set, drug prices have been driven down dramatically by generic manufacturers,
there are more data and analysis and reports and commentary and
studies and sheer newspaper copy available than any library on earth
could accommodate, and significant numbers of modest interventions
are being pursued.
So it isn't that things have ground to a halt; it's just a cumulative
feeling of inertia rather than energy, of marking time, of oh so
slowly gathering forces together for the next push, of incrementalism
raised to the level of obsession. The Global Fund has received no
new sizeable contributions for many months. The G8 Summit later
this month in my country, Canada, has made it clear in advance that
significant additional money will not be forthcoming. The NEPAD
document — the new partnership for Africa — which is the
heart of the G8 discussions, and the centerpiece for the future
of Africa, deals hardly at all with HIV/AIDS. A series of reports
to be released in the near future, just prior to and during the
international AIDS conference in Barcelona next month, will acknowledge
progress made, but at the same time recite blood-chilling statistics
on the situation of youth and children — statistics which make
you wonder whether the world has fallen into a stupor of indifference.
It's not only that we can't rest on our laurels; it's the fact
that the laurels are fig-leafs. Let me be brutally honest: in the
dead of night, I sometimes think to myself that we're losing the
war against AIDS — although I do recognize the feeling for
what it is: an unwarranted moment of despair. What we need is another
massive shot of adrenaline to take the battle to the next level,
and you, your eminences, the representative religious leadership
of Africa — you are the shot of adrenaline, the energizing
force, the catharsis of faith, hope and determination which can
propel us forward.
That's the reason for this conference. As always, children and
women carry the burden of abandonment, vulnerability, stigma, shame,
poverty and desperation. They constitute, for you, the cause you
must lead. You constitute, for them, the meaning of salvation in
terms both spiritual and practical.
Who else, beyond yourselves, is so well-placed to lead? Who else
has such a network of voices at the grass-roots level? Who else
has access to all communities once a week, every week, across the
continent? Who else officiates at the millions of funerals of those
who die of AIDS-related illnesses, and better understands the consequences
for children and families? Who else works on a daily basis with
faith-based, community-based organizations? In the midst of this
wanton, ravaging pandemic, it is truly like an act of Divine intervention
that you should be physically present everywhere, all the time.
I ask again: who else, therefore, is so well-placed to lead?
So where is that leadership? Dare I say that the voice of religion
has been curiously muted? There are notable exceptions as there
always are. Some of the finest work combating AIDS on the continent
is done through religious communities. But you will admit that,
overall, the involvement of religion has been qualified at best.
I haven't the slightest interest in recrimination or finger pointing.
My interest, our interest, should only be, where do we go from here?
I want to suggest, in the strongest possible terms, that you should
resolve, at this conference, in the name of all the children, infected
or affected, to seize the leadership, re-energize the struggle,
and turn the pandemic around. I want to suggest, in the strongest
possible terms, that you leave Nairobi this week, with a solemn
pledge to yourselves, that you will never again tolerate, even for
a moment, lassitude or passivity in the face of so monumental a
catastrophe. I want to suggest that the draft declaration of the
conference, when definitive, be embraced as though it were legally
binding.
All of us, who are your friends, understand the difficulties. We
know that certain of the faiths have problems around sexual activity
and the use of condoms. We know that there are internal struggles
around the leadership roles of women not to be taken lightly when
gender is such a visceral part of the pandemic. We know that the
religious leadership at all levels of society needs training, in
order to do an effective job in educating your adherents. We know
that even amongst religious leaders, there are numbers who are HIV-positive,
and have themselves felt the lash and pain of stigma from colleagues.
Religious leaders are human; they face the same challenges and foibles
as other mortals.
But religious leaders invoke a higher level of morality; that's
why every contentious issue must be treated afresh. The sacred texts,
from which all religion flows, demand a higher level of morality.
And if ever there was an issue which bristles with moral questions
and moral imperatives it's HIV/AIDS. The pandemic, in the way in
which it assaults human life, is qualitatively different from all
that has gone before. There is no greater moral calling on this
continent today than to vanquish the pandemic.
No one expects you to do it, one faith at a time. Somehow, you
must come together, in a great religious partnership, so that everyone
is involved, at every level. You should formalize the arrangement;
you should create an actual structure. Your draft plan of action
mandates the World Conference on Religion and Peace to make it happen.
Let it be done.
Nor can you do it by faith alone. You have to extend the partnership
to representatives of civil society, to associations of PLWAs, to
the UN family, to women's groups everywhere, to the private sector
and to government itself. The pandemic demands that you move beyond
the protective insularity of religion. It is often argued that there
must be a separation of church and state, that is to say, the religious
and the secular. But AIDS puts the argument to the rout. If the
church or the mosque or the temple don't work in concert with the
state, then death is the victor.
Let me take it further. There should be a series of targeted interventions.
Religious communities provide vital care to the ill and the dying
at village level. Somehow, the individual projects must be taken
to scale across the countries themselves. Religious leaders can
confront stigma from every religious podium in every community,
changing the values of the community through repetition and education,
week in and week out. Religious leaders should lead a campaign to
abolish school fees throughout the continent, because whether it's
fees, or the costs of registration, books, or uniforms, vulnerable
and orphaned children, invariably penniless, are denied the right
to go to school. You want a moral issue: why should a just society,
a society which has ratified the Convention on the Rights of the
Child, allow such a state of affairs? One visit to the slums of
Kabera, here in Nairobi, will reaffirm the sorry consequences for
children. It is entirely consistent therefore, that religious leaders
should throw themselves behind the Hope for African Children Initiative
because there is no dilemma more urgent, more demanding, or more
intractable than the dilemma of orphans.
Let me take the argument further still. Religious leaders must
do something about the mothers who are infected and are dying prematurely,
leaving behind those orphans who then wander the landscape of Africa,
soon to be an entire generation seething with resentment and fear.
May I strike a personal note? The thing I find by far most emotionally
difficult as I travel through Africa, is meeting with young women,
stricken by AIDS, who know they're dying or soon to die, with two
or three young children, and they ask me, frantically, "What's going
to happen to my children when I've passed — who will look after
them?" And then, in an understandably accusatory tone, they say
to me, "What about us?" And then they add, without using these exact
words, but the meaning is clear: "You Mr. White Man, you have the
drugs to keep us alive, but we can't get them. Why? Why must we
die?" And I want to tell you: I don't know how to answer that. I
have never in my adult life witnessed such a blunt assault on basic
human morality. In my soul, I honestly believe that an unthinking
strain of subterranean racism is the only way to explain the moral
default of the developed world, in refusing to provide the resources
that could save the mothers of Africa.
But right now, as I stand before you, I want to know: What will
the religious leaders do about it? Surely, in the face of such a
violation of fundamental moral tenets, you have an obligation to
intervene.
And that takes me to my final proposition. In the last analysis,
religious leaders are the best chance to influence the political
leadership of the North as well as of the South. You have contacts
everywhere. You have brother and sister churches and mosques and
temples on all the continents. They support you, they often fund
you, and they show solidarity with you. Your religious sway is not
just Africa, it's the world. And what politician would refuse to
meet with you? Who turns down a request for a meeting from a religious
leader? You have an entry to the citadels of secular power that
none of the rest of us enjoy.
What does it mean? It means that you should have a say in the Global
Fund; you should storm the rhetorical ramparts and demand that the
major OECD countries contribute the money which they have promised
— the famous 0.7% of GNP — but never delivered. You should
have some sort of collective standing or voice at the G8 meeting.
You should have a separate session at the Barcelona AIDS conference
in July. You should have a presence in international decisions,
wherever those decisions are made. You want a precedent? The Vatican
has observer status at the United Nations, and often speaks, including
at the UNICEF Executive Board; no government on that Board, at least
while I was there, ever took exception to the Vatican's right to
participate.
Religious communities historically have followed one of two tracks.
There was the religious leadership which successfully fought for
the eradication of slavery in the Congo; the eclectic leadership
which supported the conscientious objectors in the Vietnam War and
helped, thereby, to bring that foul war to an end; the Islamic and
Hindu leadership which supported UNICEF's immunization campaigns
in Asia and the Middle-East, overcoming the fears of the citizens,
and doubtless saving millions of children's lives; the Judeo-Christian
leadership that resisted the infant formula companies and supported
the right to breast-feeding.
And then there was the other, woeful track; the religious leadership
that supported apartheid; the religious leadership that was complicit
in the genocide in Rwanda; the religious leadership that was silent
during the holocaust.
No one wants a choice between the two. It's simply that when the
history of the AIDS pandemic is written, you want it said that every
religious leader stood up to be counted; that when the tide was
turned, the religious leaders did the turning; that when the children
of Africa were at horrendous risk, the religious leaders led the
rescue mission. It's what all of us beg you to do; I submit to you
that it's what your God, of whatever name, would want you to do.
African Religious Leaders Assembly on
Children and HIV/AIDS
Excerpts from the Final Declaration
We men and women, senior representatives of Africa's religious
communities, have come to Nairobi from 30 countries to confront
the terrible impact that HIV/AIDS is having on our children
and their families. All of our religious communities are living
with HIV/AIDS, and we share the pain of all those who suffer
from its effects. Called by and respectful of our different
religious traditions, we stand united on two fronts: to protect
and care for children impacted by HIV/AIDS, and to denounce
and fight the heavy yoke of stigma that our children are forced
to carry.
We proclaim the fundamental dignity of every child rooted
in the sacred origin of life. Our religious traditions compel
us to act on behalf of children affected by HIV/AIDS. Many
elements of African culture such as the concepts of UBUNTU
and HARAMBEE inspire us to pull together as communities to
confront problems that deny a fullness of life for all, especially
those affected by HIV/AIDS. We must lead efforts to change
attitudes, adopt policies, and devote resources to protect
our children, insuring that all vulnerable children, in particular
girls, receive their rightful share of all resources —
educational, medical and spiritual. We must work to help them
build a future free from the scourge of AIDS.
Our religious traditions teach us that human sexuality is
a gift from the Creator, and that we must accept the responsibilities
of this gift. We recognize that HIV/AIDS is a problem that
compels us to re-examine our traditions for guidance. It is
our duty as religious leaders to lead the fight against HIV/AIDS
basing our actions on these new understandings.
All people have the right to information on how the spread
of the disease can be stopped. With conviction, concern and
compassion, we commit ourselves and urge our believers to
work to stop the spread of this disease in ways respectful
of conscience as it is informed by our religious beliefs.
14 million orphans is more than an African crisis; it is
a disaster for the human family. In practical terms, partnership
with the rest of the world is needed, in moral terms it is
required. We appeal to the international community, particularly
wealthy nations, to provide the external resources that are
needed to overcome this scourge. Their capacity to make a
life or death difference on so many children impacted by AIDS
is their moral responsibility to do so. They must honor their
commitments to increase HIV/AIDS funding, in particular meeting
the $7-10 billion goal set for the Global Fund on AIDS, TB
and Malaria. In addition, we call on them to ensure that Africans
suffering from HIV/AIDS have access to essential medications.
The full declaration can be found at: www.hopeforafricanchildren.org
(selecting this link will open a new browser window). |
Advocacy and Activism Come Alive
in Atlanta
By Kellie Casper
I read an article the other day that enraged me. It actually happens
quite often when I'm reading articles and information about HIV/AIDS.
This particular article was about the stance of the United States
delegation at the United Nations Special Session on Children towards
issues regarding adolescent sexual reproduction health rights —
rights crucial to combating AIDS.
To read that the U.S. delegation was standing alongside Sudan,
Libya, Iran and Pakistan in blocking consensus on the Special Session
outcome document appalled me. The document would define and secure
adolescent sexual reproductive health rights including sexual education
programs.
Apparently the U.S. delegation has two specific problems with the
document. Problem number one: the language that provides the ability
for schools to offer girls sexual education without parental permission.
Problem number two: The U.S. delegation wants four paragraphs rewritten
to make it clear that abortions are unacceptable. This stance is
undermining any positive language on adolescent sexual reproductive
health rights and education.
With young people making up fifty percent of all new infections,
the Bush administration and the U.S. delegation should be ashamed
for attempting to cripple the fight against HIV/AIDS by continuing
this stance and blocking consensus.
Do you see it? The U.S. is standing alongside Sudan, Libya, Iran
and Pakistan in their retro-minded ideology on reproductive issues?
In effect this virtual buffet of ultra-conservative ideology is
helping to keep women at risk by denying them the education that
could save their lives. This, coming on the heels of President Bush's
statement in his January state of the union address that respect
for women is a right, points out the kind of double-speak that we,
as marginalized Americans, have to deal with.
I'm angry. I'm angry at the administration's ability to speak out
of both sides of its mouth and not be called on it. I'm angry that
people are still getting infected with HIV — in fact the infection
rate rose last year for the first time in years.
I'm angry that there are no microbicides, no vaccines, and apparently
(with rising infection rates) not enough education. I'm angry that
the United States, which possesses 30% of the world's wealth, has
only pledged $200 million to fight global AIDS when $2.5 billion
is needed. (Meanwhile, back at the Texan's ranch, they've already
spent BILLIONS on this war on terror.)
I'm angry that Scott Evertz has seemingly done nothing while Sandra
Thurman, former AIDS czar, has signed an agreement to coordinate
a fundraising campaign that aims to boost the United States' spending
on global AIDS to $2 billion annually. I'm angry that when Mr. Evertz
was in Atlanta to speak he didn't really address anything but his
own sexuality. God bless you Sandra!
I'm angry that I went to a student global AIDS rally and I was
the only self-identified person there with HIV and overall the turnout
was dismal at best. Cheers to the group of students who coordinated
this. Jeers to the PLWA in the area who had better things to do
that day.
I'm angry that I have to join a conference call in New York to
discover issues with Coca-Cola here in Atlanta about its careless
disregard for employees in AIDS-ravaged countries. Their employees,
our brothers and sisters living with AIDS in Africa, are being used
up and left to die, dispensible drones for the benefit of big business.
This is in my backyard, one of the largest employers in the area,
and I had to call New York to find out what's going on and what
to do about it.
I'm angry that in this country there are only pockets of coordinated
activism any longer. New York, Philadelphia and areas of California
are doing what is necessary — the rest of us are just trying
to survive on the work others are out there getting arrested for.
I'm angry that people with HIV/AIDS are sitting around bitching
about issues yet not willing to get off their asses and do anything
about them. The mindset that "my social worker, the E.D. of that
agency, or someone else" will do it really grates on my nerves.
Granted, I am fairly newly diagnosed and not yet burnt out, but
where is the anger of the '80s? The differences made then were made
by people living with the virus, not their social workers. We (people
with HIV/AIDS) took the lead and did what was necessary to be taken
seriously, THEN the empathetic non-infected folks joined in. It
seems today we rely on them to do it all.
What I'm angriest about is that no one else seems to be angry.
The complacency I see in Atlanta is almost as prevalent as it was
in rural Indiana, which I left to come here. Believe me, that is
not a complimentary statement. It seems that HIV/AIDS only exists
here within the walls of the clinics and AIDS service organizations.
The lack of a collective will to do something about any one of the
issues we have to be angry about is beyond belief to me.
When programs are underfunded and overburdened; when infection
rates are rising; when people are dying and injustices continue,
why are we not enraged to action? How dare we not be?
Where are you, positive people? Why are we not protesting in the
streets, marching on the legislature and staging civil disobedience?
Why aren't we ACTing UP and being heard? I wish I knew what it would
take to stir you to the anger that brings action.
There is a time and a place for this kind of advocacy/activism,
just as there is for, what a friend of mine calls, "polite advocacy".
Both are necessary and vital, both can effect change. While I have
seen great examples of "polite advocacy" here in Atlanta —
letter writing campaigns, coordinated visits to the legislature,
call-ins — I have yet to see the "in your face" advocacy too
long silent in this area.
We, those of us living with HIV/AIDS, are easily overlooked and
marginalized, but ONLY if we allow it. Truly if we are not willing
to fight for our own rights, how dare we expect anyone else to do
so on our behalf?
Is anyone else angry?
| I would like to formally announce the reorganization of
ACT UP Atlanta! While in relative infancy and struggling with
the pains consistent with growing and attempting to attract
interested parties and get the word out — we will be
having a Town Hall Meeting in July closely followed by our
first organizational meeting. Already a handful of sharp,
involved members of the community have expressed interest
and commitment. I am excited and think that we have every
true hope of becoming an active, vital coalition. Contact
Kellie Casper: 770/432-2436, or via e-mail: kbcasper@bellsouth.net. |
Talking to Adolescents about
Condoms
Excerpts from an online dialog on Nigeria-AIDS eForum
The Question
There is an issue I would like us to address in this forum. This
has to do with talking to adolescents about and offering them condoms.
The question I would like to ask is: "Would you in all honesty
offer condoms to your 11-year old or 13-year old sister or brother?
If you were counseling him/her about his/her reproductive health/sexuality,
at what stage would you bring in condoms?"
Responses
Helen Knox:
I think the time to show them is the time they ask about them, without
hiding the truth from them. By showing them a condom you are not
telling them to go out and HAVE sex. You are answering questions
with honesty and openness from a young inquiring mind. If you don't
tell them the truth they will hear rumors from friends and the whole
cycle of mistrust, confusion and misinformation perpetuates. It
has also been proven, and well documented, that young people who
are better informed about contraception and sexually transmitted
infections actually delay the onset of first intercourse rather
than the other way around.
I did this with my niece when she was nine because she came across
my teaching kit in the back of the car one day. She already knew
what condoms were for since she has older siblings and overheard
all sorts of conversations as the youngest in the household —
but she was 'out to test' and see if she could embarrass me. We
sat down and I explained them to her in a way she could understand
for her age, but answering her questions rather than telling her
'put it away, that's not for you to see, you are too young, etc.'
She picked up other things in my teaching kit and we chatted openly
about anatomy and physiology as well as the various methods of contraception
she was picking from the box in fascination. Her curiosity was satisfied
because she was treated with respect. Her parents were thrilled
because they knew I would have answered her questions professionally
and that she would have someone she could ask her probing questions
of, who would not get embarrassed and turn her away when more inevitable
questions arose. She was years ahead of her peers and when their
time came to ask questions she was able to act as an informed resource
for them as well, for they knew that she has an auntie working in
the field of contraception and sexual health. My books did the rounds
of her peers without any prompting from me.
Other people may have a different view but my view is honesty and
openness, with respect for the person asking the question, whatever
their age and whatever their question, at all times. We each mature
at different rates and children with an inquiring mind will seek
out an answer from somewhere. In my view, it is better they get
the truth than being treated with contempt for asking to learn something,
whatever their age or reason for asking.
Holo M. Hachonda IV:
I can't really say that there is a standard age for introducing
condoms to young people. I guess it's really dependent on the person
you are dealing with. Eleven and 13 year olds are still very young
and any normal person should think twice about introducing condoms.
But then I think of the number 15-year-olds with babies that I
have met while working in the field in rural Zambia and I think
of the number of STD cases among 13- to 15-year-olds that I just
saw at one rural health post about two weeks ago. I also think of
the number of friends and cousins (between ages 20 to 28 years)
that I have personally lost over the past 12 months.
Then I say, talk to them about condoms as soon as the need is seen
and appreciated. I am saying appreciated because many times we see
our young brothers, sisters and children indulging in risky behaviors
and most of us choose to look away or convince ourselves that they
are still young and are probably not doing it.
The fact that you think or feel that they need counseling means
that you have seen a need that has to be met. I am not saying that
we should promote condoms among 13-year-olds but that we should
treat different situations as they arise.
Thirteen-year olds in one setting may not have the same reproductive
health needs as those in another. Young people are not a cluster.
So, I am saying that if I saw the need, I would give my brother
or sister condoms after a lengthy talk about other options, as this
is the only way I think they could be safe.
Zacch Akinyemi:
I do not think that age should be the main determining factor for
offering condoms, but rather, the sexual behavior of the individual
adolescent. If a child is 13-years-old and very sexually active,
he/she should be given a condom and perhaps encouraged to abstain
from sex if he/she can. I will encourage a 17-year-old child to
continue to abstain if he/she is currently not sexually active.
If you are dealing with a group of adolescents where only a few
are sexually active, emphasis should be on abstinence but where
the majority are sexually-active, then the emphasis should be on
condom use.
Adama Ibrahum:
I strongly believe the HIV issue in Nigeria is great and that school-age
children before they reach sexual age is the best target for any
long term health promotion.
It is a sad state of affairs that we have to offer condoms to our
very young but I believe your question cannot be answered universally
and should be considered carefully.
Ask yourself, how the offering of condoms can be a solution if
the sexual decision making is not understood. Empowerment with information
and the ability to understand that they have choices to say no to
sex or to use condoms seems a more effective option for me to choose.
There is also the aspect of the parent's opinion and a church's
position — How would they feel if you hand out condoms? Think
about obstacles and work around them. Handing out condoms to prostitutes
and other very high-risk groups might also be wise to control transmission.
Joe Manciya:
Make no mistake, 11 year olds are mature enough to digest the basic
and accurate information on sexuality issues. I say this from a
personal and a practical point of view. I have been doing Life Skills
Education to the local Communities, Schools, Churches and Tertiary
institutions in South Africa for the past five years. Kids are very
knowledgeable about sexuality issues at very early ages far less
than 10 years.
Nine-month old kids have been raped, abandoned, sodomized and so
on. That tells you that it's not only the matter of knowing, but
they have personal experiences of these atrocities. They have cried
but are never helped. They have been intimidated but no one came
to their rescue. They have been starved to death; no one came with
food for their relief. Kids grow with a lot of information kept
silent because parents do not create an atmosphere conducive for
discussion.
As a young adult doing life skills education, kids have found it
very easy to identify with me. Secondly, kids who have been fortunate
or unfortunate enough to be exposed to various kinds of media, such
as TV's, radios, magazines or Internet surfing find it very easy
to adjust to the sexuality discussions, even though they are at
their sixes and sevens of years old.
I would rather hear of a child with a condom in hand pleading with
the rapist to use it than waiting until the child is old enough
— because rapists do not wait until children are older. Also,
most of these children I have managed to talk to were raped by family
members — so it's no point to say you will always keep a child
at home, because the enemy may be right in front of you, under the
same roof. Religion or no religion, I have colleagues who are now
living with HIV, who were raped by the most reliable and respected
members of their religious communities.
Gone is the time when we were told that children are brought by
aeroplanes to this mother earth. That was then, but now it is time
to implement all the theories that we discuss in our forums and
seminars.
Catherine Phiri:
If your country has statistics anything like mine, Zambia, where
kids as young as 10 years old are having sex, then yes I would give
my younger brother and sister condoms. I would show them how to
use them and then tell them the dangers of having sex and why they
shouldn't be having sex. I would then encourage them not to have
sex and let them know that the decision is theirs and only theirs
to make.
Then I would pray that they don't have sex at that age, but console
myself with the knowledge that if they do decide to have sex then
at least they will be protected because they have condoms and know
how to use them. That is what I think I would do because I work
in this field, but in all fairness I don't have a sibling that young.
I would do it for my cousins, though.
Adedoyin Onasanya:
I will not repeat what has already been said. What I would like
to point out though, is that the question in my opinion points to
a bigger issue — that of our conflict between what is moral
and what is ethical, and brings to the fore, our own biases about
providing young people with reproductive health and sexuality information.
Providing young people with sexuality education still remains a
very controversial issue in Nigeria, and many professionals and
educators are yet to reach the point where they are able to work
with young people without letting their own values influence the
kind of services they provide. As professionals, our duty is not
to advise young people based on our personal convictions, but to
present them with the facts in an unbiased and non-judgmental manner.
We need to guide them in making the decision they feel is best for
them, drawing on the facts they've been presented and their own
values and convictions.
Until we clarify to ourselves what our moral and ethical obligations
are, our efforts to deal with incidences of unwanted pregnancies,
STDs and HIV/AIDS among young people will continue to yield very
little fruit. Thank you.
Busola Babalola:
Whether the society likes it or not, we cannot shy away from the
use of condom. Like I told a Christian friend, some can abstain
while some cannot. Compared to what the society was like when we
were growing up, the fear of parents and the teachers has disappeared
in the society today. As technology is increasing, so also the wild
life. If we are interested in controlling HIV/AIDS, then we need
to lay more emphasis on the use of condom.
Paul Udoto:
I am overwhelmed by the responses on talking about condoms to adolescents.
I would certainly talk to them about condoms but ensure that they
have values to live up to and give them information and skills to
resist the pressure to engage in premature sex.
I would also support moves to punish those that sexually abuse
the young or lure them into sex.
I would also back campaigns to offer them life skills about decision
making, negotiation and respect for women. Above all, I would fight
poverty that has led many to risky sex.
Materials reproduced from the Nigeria-AIDS eForum, the email
discussion forum of Journalists Against AIDS (JAAIDS) Nigeria. To
subscribe, send an email to: eforum@nigeria-aids.org
or visit: www.nigeria-aids.org
(selectinging this link will open a new browser window).
Worldwide Advocates for Microbicides
Meet
By Anna Forbes
Field Organizer, Global Campaign for Microbicides
On May 14, 2002, the Advocacy Panel of the Microbicides 2002 conference
in Antwerp offered positive proof of the existence of a worldwide
multi-faceted microbicide advocacy movement. Presentations from
North and South America, Asia and Africa vividly illustrated the
indigenous growth and diversification of efforts that has occurred
within the movement over the last two years.
Global Campaign director Lori Heise kicked off the panel with an
overview of the policy and advocacy objectives of microbicide advocates
worldwide. By comparing and contrasting the challenges faced by
microbicides, vaccine and "universal access to treatment" advocates,
Lori provided a thought-provoking analysis of the similarities and
differences among these three closely-related branches of HIV/AIDS
activism. Like the vaccine advocates, for example, we confront the
challenge of promoting prevention tools that do not yet exist. On
the other hand, we deal with the unique challenge of talking explicitly
about gender and power as determinants of sexual risk — a touchy
topic that vaccine and treatment advocates do not routinely confront.
Lori's presentation concluded with an encouraging report on the
field's progress to date, noting microbicide advocates can take
credit for mobilizing at least $40 million in new funding since
the Microbicides 2000 conference two years ago. This represents
one of the largest injections of funds into the field to date.
Lilja Jonsdottir of the Canadian AIDS Society described the Microbicide
Advocacy Group Network (MAG-Net), a broad-based national effort
sponsored by the Canadian AIDS Society to raise awareness and implement
a grass-roots microbicides advocacy strategy throughout Canada.
The MAG-Net meets via quarterly, nationwide conference calls and
has developed a database and listserv to facilitate collaboration
and strategy development among its geographically far-flung network
of members.
Princess Olufemi-Kayode described the process of effectively reversing
media silence on HIV/AIDS issues in Nigeria by creating Journalists
Against AIDS (JAAIDS), a media-based NGO. JAAIDS is mainstreaming
news on microbicides and other woman-controlled prevention options
by providing trainings, roundtables, bulletins and seminars for
members of the Nigerian media to raise their awareness, and hence
their coverage, of these issues. Some of the fruits of their efforts
can be seen at www.nigeria-aids.org
(selecting this link will open a new browser window), where material
from JAAIDS six-month long, "Open Internet Conference" on HIV/AIDS
are posted. This e-conference, which included "Vaccine, Microbicides
and Female Condom" as one of its twelve topic themes, attracted
participation from a wide body of stakeholders including PLWHAs,
community activists, program managers, government officials, donors
and others. Princess reported that the President of Nigeria is "finally
taking on HIV/AIDS as a priority," a development attributable in
part to the heightened media coverage generated by JAAIDS.
Bobby Ramakant followed up on Princess' presentation with some
lively advice on "Tapping free media potential for microbicide advocacy".
Since most NGOs can't afford media space, he provided a rapid-fire
summary of the tactics used successfully to generate free coverage
in the Indian press. Correct selection of messenger, timing and
delivery method all contribute to getting the story covered and
accurately framed. As a skilled journalist and committed activist,
Bobby has gotten microbicide coverage in the Kashmir Times, The
Indian Express and the Times of India, among other outlets, and
produces a column called M-POWER every two weeks for the South Asian
Women's Forum.
The panel concluded with South American activist Henriette Ahrens
describing efforts to promote microbicide awareness and female condom
access in Brazil. Between 2000 and 2001, they succeeded in doubling
(from two million to four million) the number of female condoms
purchased by the Brazilian government for distribution to women
at highest risk of HIV infection. (By contrast, the government is
purchasing and distributing 400 million male condoms annually.)
The increase in female condom access is, nevertheless, a substantial
step forward — as is the fact that an increasing number of
NGOs (412 at last count) are now distributing the female condom
to women who, otherwise, would be unable to get them.
Henriette and her colleagues in the Brazilian National STD/HIV
Program have also persuaded the Brazilian National AIDS Program
to convene a national stakeholders meeting on microbicides, which
will involve universities, governmental officials and NGOs with
experience in microbicide advocacy. How exciting to see Brazil,
the country that pioneered efforts to make universal access to HIV/AIDS
treatment a reality in the Global South, take on the issue of female
condom access and microbicide advocacy!
In talking about the challenge of communicating clearly, Bobby
Ramakant said, "When I show the moon to people, many see my fingers."
In this panel, advocates showed us how they are helping their countrymen
and women to see the moon — the realizable dream of safe, effective
HIV prevention tools that anyone can use.
Visit the Global Campaign for Microbicides on the Web: www.global-campaign.org
(selecting this link will open a new browser window). To get involved,
look for the "Advocates Corner near the bottom of the page.
Treatment for HIV Wasting Withdrawn
By Bob Huff
Organon International of West Orange, New Jersey, the only U.S.
maker of Deca Durabolin (nandrolone decanoate), an injectable anabolic
steroid used by many HIV-positive people to combat AIDS-associated
weight loss, has decided to cease marketing the agent. The company
informed the FDA last November that it intended to discontinue sales
of the product first approved over forty years ago.
Over eight studies have shown nandrolone to be effective for increasing
lean body mass (LBM) and strength in men and women with HIV. A randomized,
placebo controlled trial in 38 women conducted by the AIDS Clinical
Trials Group (ACTG) reported significant increases in weight and
lean body mass after 12 weeks of nandrolone therapy (100 mg every
two weeks). There were no differences between the groups in fat
increases or in clinical or laboratory adverse events. Hoarseness,
hirsutism, and clitoral enlargement were noted rarely in the treated
group.
The drug is approved in the U.S. to treat anemia due to renal insufficiency,
however many doctors prescribe the agent "off-label" to HIV patients
to stimulate weight gain. Nelson Vergel, an advocate for HIV wellness
in Houston, Texas said, "This is the safest and most cost effective
anabolic steroid in the world and now we have no manufacturer in
the U.S."
Besides its safety and reported efficacy, nandrolone is a relative
bargain. Treatment costing $150 a month can result in 12 to 30 pound
increases of LBM in a wasting patient within four months, according
to Vergel. "Many people are taking this drug in a maintenance regimen
to keep the LBM they have gained, and are faced with losing it —
and their weight gains — if no other source becomes available."
"This is a disaster for many of my patients," said Howard Grossman,
a New York City physician with a large HIV practice. "We use nandrolone
extensively in patients who have testosterone deficiency and are
also losing weight. We've seen better weight gain than with testosterone
alone and more accumulation of muscle mass. People feel better.
I haven't found any increase in side effects."
It's been rumored that, based on the promising U.S. studies for
HIV-related wasting, Organon may have applied for FDA approval for
Deca Durabolin to treat HIV wasting two years ago. Many suspect
that the company intends to return the drug to market at a substantially
higher price once approval has been secured for the new indication.
Approval to treat HIV wasting may actually increase the utilization
of the steroid as more doctors become aware of the substance and
as third-party payers add the drug to their approved formularies.
Ironically, as a part of their FDA submission, the company may point
to many years of off-label usage in the HIV community as a testament
to the safety of the product. According to Vergel, nandrolone was
first prescribed for HIV wasting by a doctor in Los Angeles in the
early 1980s and its use has grown steadily ever since.
A recent study by Wanke et al reported that as many as 29% of people
with HIV in the era of HAART are still losing weight or lean body
mass, despite undetectable viral loads.
Nandrolone decanoate is especially attractive because of its benign
side effects profile compared to alternative steroids. According
to Vergel, unlike oral steroids such as Oxandrin and Anadrol, nandrolone
does not impact liver function lab markers at the low doses used
in HIV — a crucial issue for many people with overtaxed livers
from HAART or HCV. One of the FDA approved products to treat HIV-wasting,
Megace (megestrol acetate), tends to produce its weight gain due
to increases in fat rather than lean body mass — and adding
fat during AIDS wasting has not been shown to improve survival.
Megace, a female sex hormone, has also been associated with side
effects such as diabetes, blood clots, impotence and the development
of female sex characteristics. Another agent approved to treat HIV
wasting, Serostim (recombinant human growth hormone), lacks evidence
of benefit beyond 12 weeks and can cost as much as $8,000 a month.
FDA approved appetite stimulants such as Marinol contain the psychoactive
ingredient in marijuana (THC), notes Brenda Lein of Project Inform,
and "thus is not a preference for many people with HIV who are in
recovery." Also, it's theorized that Marinol may simply owe its
ability to increase weight to a side effect of the THC high —
that people get the munchies and tend to eat more. Unfortunately,
it's usually junk food that's consumed to satiate the craving.
A compounding pharmacy, GulfSouth pharmacy, is reported willing
to make nandrolone in small quantities as long as raw materials
remain available, but this is expected to only provide a temporary
supply to those who can benefit from the substance. Although there
are other generic makers of the product internationally (easily
located on the Internet), this offers little help to U.S. patients.
Anabolic steroids and testosterone are designated by the Drug Enforcement
Administration (DEA) as class III drugs, which are illegal to import
even for personal and medical uses.
Up until four years ago, nandrolone decanoate was available from
a generic manufacturer at a cost of about $16 per 200 mg dose. After
generic production was halted, Deca Durobolin, the brand name product,
was available from Organon at $32 per 200 mg dose. A typical low-dose
regimen may prescribe 200 mg per week for twelve weeks in order
to produce increased lean body mass. Some activists fear that the
price could reach exorbitant levels when and if the product is reintroduced
with an FDA imprimatur for HIV wasting.
Says Vergel: "An economical and safe product like Deca Durabolin
needs to stay in the market at the current pricing levels. FDA approval
for wasting could mean that more third party payers could cover
its cost, but we should not tolerate any increase due to the 'AIDS
cash cow effect'."
San Francisco AIDS activist Mike Donneley said, "Many activists
will think that this isn't a fight for us, but I know I finally
had the energy to go back to work when I started taking very low
dose Deca. It made all the difference in the quality of my life."
A nationwide network of activists is swinging into action around
this issue. Vergel says, "I feel very strongly that "quality of
life" drugs need as much advocacy efforts as antivirals, especially
in this era."
Nelson Vergel can be reached at powertx@aol.com
or through www.medibolics.com
(selecting this link will open a new browser window).
The Rhetoric of Inaction
By Gregg Gonsalves
For light summer fare this June, I'm reading "A Problem from Hell:
America and the Age of Genocide," by Samantha Power. The book reviews
the United States' response to genocide, from the slaughter of Armenians
at the beginning of the 20th century to the raw and recent tragedies
in Bosnia and Rwanda. I won't make a facile comparisons of the Holocaust
to the AIDS epidemic, but some of the ways in which the U.S. avoided
intervention in those cases bears striking resemblance to the way
our country has handled the epidemic, at home and abroad.
Power mentions "the rhetoric of reaction," a taxonomy proposed
by social scientist, Albert O. Hirshman, which identifies three
key "excuses" for avoiding progressive policymaking: "Futility —
the claim that all attempts at social engineering are powerless
to alter the natural order of things; perversity — the argument
that interventions will actually backfire and have the opposite
of their intended effect; and jeopardy — the idea that a new,
possibly more radical reform will threaten older, hard won liberal
reforms."
Futility, perversity, jeopardy. Three powerful alibis. I spend
too much of my time in meetings or on conference calls with policymakers
and colleagues who continually invoke these three arguments:
Futility: A senior NIH official recently told me that investigation
into the long-term risks and benefits of antiretroviral therapy
(ART) aren't feasible. That studies on side effects or on the best
time to use, switch or stop therapy can't be done because they are
too difficult to do — and furthermore, industry and academic
researchers have little interest in doing them, the former, for
lack of commercial incentives, the latter, because of the scant
likelihood of academic advancement based on such research.
Perversity: A virologist recently buttonholed me to warn that deploying
ART in the developing world will backfire and spread HIV drug resistance
across the globe.
Jeopardy: A fellow AIDS activist cautioned me against targeting
high AIDS drug prices in the U.S. He's worried that challenging
Big Pharma's profits in their most lucrative market will kill the
goose that lays the golden egg by shaking their resolve to develop
new drugs. He urges me to be satisfied to confine my activism to
reducing prices in the developing world.
It's hard to constantly run up against these excuses and not get
angry. Yes, long-term clinical effectiveness studies are hard to
do. Yes, there's little commercial or academic incentive. Yes, ART
will breed drug resistance. Yes, drug companies may invest less
in research if profits dip significantly. But it isn't enough to
simply get angry, just as it isn't enough to advocate and not address
these concerns.
If there is no commercial or academic incentive to do long-term
studies, then the public sector, the NIH, can fill this gap. If
the NIH is not set up to do this type of research by virtue of the
"natural order" of U.S. academic medicine, then maybe some language
in the next NIH re-authorization bill can spur a change in the system.
If it's not obvious that this kind of operational and public health
research is a public responsibility then perhaps it needs to be
explicitly mandated.
If ART breeds drug resistance — which indeed it does —
then perhaps programs to promote "treatment preparedness" that discuss
adherence and the risks and benefits of therapy need to be established
to educate people with AIDS before the drugs become available.
If drug companies threaten to invest less in research, then perhaps
legislation should be passed to ban direct-to-consumer advertising,
which is a far bigger resource drain than R&D expenses.
After two decades of AIDS, much of the easy work of activism has
been done (as if any of it was ever easy), and the most difficult
dilemmas remain. We have to confront the charges of futility, perversity
and jeopardy that our activism engenders and address these issues
head-on.
One hundred million people may be infected with HIV by 2007. Perhaps
some comparisons are less facile than most, and as Justice Edwin
Cameron said at GMHC last June: "the language of 'holocaust' and
'genocide' is not inapposite. The moral issues are unambiguously
clear, and the imperative to action is unequivocal."
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