October 02, 2006
In August, my wife Barbara and I were delegates
to the 16th International AIDS Conference in Toronto, subtitled TIME
TO DELIVER. It was a meeting of many thousands of people concerned with Aids,
some in organizations that work with
Aids victims or their families, some in research, looking for a
cure and many who have the HIV virus and live fairly normally, for many years.
We had offered to volunteer, as members of Save the Children
Canada to help in the handling of the massive organization involved in an
undertaking this big.
Instead of workers, we were designated to be
delegates, apparently because we could carry the message of the conference back
to our community. So here I am to tell you what it was like ”
based solely on experience, informed by vague dollops of knowledge.” as Stephen
Lewis wrote.
We arrived on Saturday, the day before the conference
opened on August 13. We lined up with hundreds of others to register and had
the opportunity to talk to people in line and to look around at who else was there.
Canadian
Delegates included people
who are living with aids and/or working or volunteering in the field of
HIV/AIDS, with special concern for including women and applicants from
grassroots organizations.
International Delegates were given scholarship assistance on the basis of
enhancing their work in their own communities, those people who are able to
assist in the transfer of skills and knowledge. The criteria included
geography, field of work in HIV/AIDS, occupation, age, gender, and HIV
status. There was also a Media
Scholarship program to encourage developing countries’ media awareness of Aids
programs.
The registration package included a weighty briefcase
with a 500-page program, plus “late breaking” supplements. Everyone had an
electronic name badge and it was continually necessary in order to pass through
the security gates set up at all the entrances, very much like an airport.
Most of the people were outgoing and friendly and it
was just like standing in line in the supermarket. Some were Canadian
Aboriginal, and a very great many others were African, Chinese, Indian and from
the mid east.
Some were identifiably homosexual and I remembered
that this disease in the eighties had been called The Gay Plague. Some may have been drug users, since the
HIV virus is transmitted by the use of dirty needles to inject drugs. People who have aids, contacted in this way,
are also part of the Aids family and a necessary part of the conference.
and I wondered what this to do with me?
Standing in line that first day, we fell into
conversation with a no nonsense type woman and learned that she, an American,
had lived in Switzerland for 30 years and works in migration, currently in
Ethiopia. She said, it’s called migration but it is really human
displacement. She is involved in measuring the amount of the virus that is
crossing borders with refugees.
These are tagged opportunistic diseases,
finding victims whose immunity is low due to the HIV virus. Many aids victims die of Tuberculosis..
A short
conversation with a fifty-ish teacher from upstate
We stayed in a
13-story high rise college residence at
I had
breakfast one morning with Stephan, a francophone working in a drug clinic in
Stephan
made very halting attempts to tell me in English what it was that he did in
treating Aids in
This kind of presentation was frequent on the main stage of an area called the Global Village, but was also performed outside on the streets of Toronto, in this case at Dundas Square.
With between
twenty and thirty thousand delegates at the conference, we were an identifiable
component in the
On
Later in the
week, one of the very conservative, scholarly, medical people presenting a
paper said that he was gay, and had "come out” thirty years ago
and has been living with aids for twenty-five
years.
He was an
American doing research in Asia studying the alarming increase in Aids in
One of the panellists in another session was an
American lady working in aids in
Richard Gere told a poignant story. He said that in
the early eighties he was a young man trying to be an actor, in
I was to learn that there are many people in
Living with aids, not dying, not being
sick. It is much
easier to live with aids, here,
where we have universal access to medicine, than it is in the developing countries.
It is possible to live fairly normally for many years, with the use of a daily regimen of pills or in some cases, one pill. Universal Access to this treatment is now the goal, following the earlier “3 by 5” program, which had as its goal that three million people would be in treatment by 2005.
There was a shuttle bus than ran between the subway
station and the college residence. One of the delegates we met on the bus was a steely
haired woman
from the Aids clinic in
The Global Village was a large area with more than a
hundred booths lined up like
a home show. Groups from around the world each used a
booth to showcase what they were doing in their area,
or country or to promote their particular message.
At the conference, I met three people who had been
here in
The second, a divorced woman in her late thirties,
was someone we knew fairly well when she was in
LIVING WITH AIDS is made possible because there has
been success in finding anti retroviral drugs that control the virus.
In the developing world the anti-retroviral is
available and is being used effectively in treatment. It is allowing people to
live with the virus. However, there is great frustration that the other drug
that would strengthen the body’s immune system,
increase the CD4 cells, and delay the onset of Aids, is not
available.
The third person we had known in
I am guessing he felt the stigma that attaches to the
“evil practices” that are connected with aids: sex and drug use. There is no
doubt the stigma exists, although there is an ever increasing number of
ordinary people who are HIV positive. Outside of the aids clinics, they are
unknown and seem un-remarkable.
As a result, in our culture, the stigma is not overt
and there are varying degrees of understanding and acceptance.
Some people who have died with aids contacted it
through tainted blood.
Blood for transfusions was not tested for HIV until
1985. Anyone who received blood before
that was at risk.
This stigma, however, is a very powerful factor in living
with aids in
Neither she, the widow, nor her orphan
children have any property
rights and are forced off the land. She dies in misery and her children become
part of the many orphaned children, the luckiest of whom are now in the care of
their grandmother. Others live as sibling-headed households with kids as young
as ten or eleven years old taking care of the younger children
The countries of
The Rights of the Child, including the right to a healthy childhood, has been accepted by every country except three. it is, however, more noticeable for the extent to which countries fail to fulfill the obligation they accepted, than for any success is ensuring all children enjoy these Rights.
The primary defence against HIV Aids is protection, especially in regard to sex. The word condom has never been a part of my conversation. At this conference, I heard and used and was bombarded with the word more than I ever would have imagined. Whether it’s my age or my comfortable middle class life, doesn’t matter.
What we need to accept is that safe sex, with condom
protection, is a necessary part of today’s world.
Surely not in
Research among
women at the
25% of all the new infections in the world occur in
people under twenty-five
Protection is of vital importance: it could save your
life.
Second only to prevention by protection is Testing.
Living with controlled Aids is only possible if you recognize the disease, and
the advantage to others of you knowing if you are HIV positive is obvious. As
one message on a t-shirt said, it does not show on their face: get tested,
encourage your friends to get tested.
Testing for the virus is a large part of the drive for better treatment. It now is necessary to wait up to three weeks for the result of a test for HIV. It is possible, and imminent, if the money can be made available, to have testing that returns the results in fifteen minutes.
The Global Fund is the source of most of the funding
in the fight against aids. It was created in 2002 as an independent fund, based
in Geneva. The United Nations Aids agency says it is the best model to
provide strategic and predictable funding as we move from crisis management
to a sustained Aids response.
The Fund now operates in 127 countries providing
money for treatment, prevention and research in regard to malaria and tuberculosis
as well as Aids. It is known to demand accountability and has recently
withdrawn funds from programs in Nigeria
The Gates Foundation has made three major contributions to the fund: $100 million in 2001, $50 million in 2004 and $500 million, over five years, just before the Aids conference.
The G 8 summit in the early summer in 2005 promised
funding from the industrialized countries, but by the early fall, The Global
Fund was recognizing there would be a shortfall in the fulfillment of these promises.
(To do what should be done to fight this pandemic the Global fund needs 8.3
billion $ in 2006)
Bill Clinton, in a two man panel with Bill Gates,
answered a question from the floor that was something like “do you think this
can be beaten, that there is a cure?”
Clinton referred to the huge amount of money that
Warren Buffet had transferred from his foundation into the Gates Foundation and
the vast amount of money that the Gates Foundation has pledged and said
something like “do you think these two men would be giving these enormous
amounts if they were not certain that the fight could be won?”
Clinton also made a funny. The question from the floor was about whether
or not he had paid too little attention in the fight against aids when he was
the president. He said he did not,
and cited several ways in which his administration had taken action. Then he
said, I did some things while in office that I shouldn’t have, but that wasn’t
one of them.
In another session with Clinton alone, an activist group
stood up with placards made of tee shirts on shoulder-wide forms. The message could be read as they wore the
shirts, or as they were held up, like placards. They were agitating, as they
had done several times before, for more money to be allotted for health care
workers. Clinton interrupted himself with a grin, to say to them, “ok, ok I‘m
coming to you”.
Health Care in the developing world, at least in
Africa, is suffering from a shortage of workers. The health system is simply
inadequate for the load being put on it.
Under-paid workers, who are at some risk, too often opt out and come to
our world where they are readily absorbed and better paid. One of the great needs is for more money to
be put into paying health workers in each countries’ own system.
When Melinda Gates spoke, she focused on the
empowerment of women, primarily in developing countries where the woman cannot
deny the man, and where she cannot insist on safe sex with condom
protection. There is major gender
inequality in the economy, in education, in civil rights and in access to
health care. However, more and more
women are taking active roles in the treatment of aids, which inevitably
includes prevention. Aids will never be cured until it is prevented.
(Unprotected sex is common and one speaker repeated
the thought of the young teenager who was selling herself in order to feed her
brothers and sisters. The price she got
for sex with no condom was twice as much as she could get with the protection. Her response was based on “today I have to be
the breadwinner. Tomorrow I will worry
about the disease”)
Stephen Lewis also demands empowerment of women and
rails against the gender inequality in Africa.
A much higher percentage of Aids deaths is recorded among women than
among men. Yet, the family which is
often single parent, mother led, relies on the woman to produce the food and
raise the children. When a whole
generation of mothers is being decimated by Aids, the economy of the entire
country suffers.
Lewis was there
through the whole conference and made several presentations.
Panels and
discussions and information sharing went on all day each day. There were four hundred different sessions,
mostly presentation of abstracts that had been submitted from all over the
world. (I think I read that thirteen thousand abstracts had been received, of
which 800 were chosen to be presented.
Save the Children, for instance had submitted over 50 abstracts and had
13 accepted.)
Many of the sessions were scientific and shared
knowledge among researchers and medical people working in finding treatment and
a cure. Some abstracts had esoteric
titles. (like “Optimization and antiviral analysis of peptide ligands for the
HIV-1 packaging signal PSI.”) They were well attended, but were way over my
head.
There is much research being done and comparisons and
blind studies of different medicines and approaches. Results include new anti-retroviral treatment
at less cost and with fewer side effects.
A Microbicide gel for use by women has been developed. The necessary research has led to the current
availability of treatment and potential cure.
Nevertheless, it is Stephan Lewis’ raging complaint
that the question is being researched to death. That “we seem not to be able to
get our act together”. It is time to concentrate on delivering treatment. “More
of the same is not enough.”
Mother to child transmission is negligible in North America, due to availability of medicine, but it is significant in Africa and Lewis is angry because it needn’t be. The necessary drugs are in production, but are not being made available.
Lewis claims “research is the last refuge of the
intellectual wimp”. It is necessary to do more of what Clinton has done in
getting the price of drugs reduced. It is necessary to intervene NOW, without
waiting for further studies. People are
dying: “all these kids who are dying for no reason whatsoever”.
He supports the cry of the Aids Organizations and
NGO’s that they require funding that is
STABLE, SUSTAINABLE, FLEXIBLE and ACCOUNTABLE. (flexible in regard to the
country and culture where it is to be spent, accountable in that there must be
proof that the funds have been directed where they were intended).
STEPHEN LEWIS also referred to Aids in Canada and
noted the disproportionate number of aboriginal peoples who are infected. He
commented on programs of safe needle exchange but notes we will need to change
our judgemental attitude
that only condemns users. Drugs are bad. The business of drugs is criminal.
But the users are still dying of aids.
He went on to make many recommendations, mostly
referring to his role as UN special envoy in Africa for Aids. He referred to an
earlier program of A B C: abstinence, be faithful, condomize:
ABSTINENCE (like that’s going to happen)
BE FAITHFUL (it is not a cultural norm)
CONDOMIZE (not until women have the power to
insist)
Lewis noted that ABC has not worked and he was
critical of a US government policy that tied 30% of its aid to a country’s
commitment to promote abstinence.
Lewis called that “neo colonialism”, a throw back to
an earlier time when we thought we could tell them what they should do.
(An example of the culture is found in a population
of fishermen on the large lake in the middle of Africa, whose lifestyle makes
them at very high risk. Among this group they quote the saying “a cow dies with
grass in its mouth” which is to say, “life is uncertain”, “live for today,
tomorrow is unknown:” don’t avoid sex for fear of an unknown future.)
Lewis recommends we recognize that ABC does not work.
He referred to
the need for FOOD and said 66 cents a day will feed a family thru the existing
World Food Program. He spoke about VIOLENCE AGAINST WOMEN
and CHILD ABUSE
and ORPHANS AND OTHER VULNERABLE CHILDREN who need help in surviving. In
Africa, the Orphanages are over crowded and only 3% to 5% receive any support
from the state there is drastic need for social programs and a sustainable
income.
There has to be
TREATMENT for people who are presently dying “and who do not need to die!” and
there has to be TESTING AND COUNSELING. We need to “scale up” availability and
”roll out” treatment to masses of people. (“scale up” and “roll out” are two
buzz words that are in frequent use).
Treatment is
being “scaled up”. Three years ago there
were 100,000 patients receiving treatment in sub Saharan Africa. By the end of
2005 over 800,000 patients were receiving the treatment. It is called HAART,
“highly active antiretroviral therapy”. It is called one of the truly greatest
success stories in modern medicine. It is a combination of several drugs, which
work in unison better than any one of them worked as mono therapy.
However, even as
treatment increases, it is not keeping pace with the rapid increase in
transmission of the virus. Last year there were almost 5 million new
infections, which is 13,500 a day, almost 10 per minute.
(SOUTH AFRICA,
with the highest percentage of its population infected, continues to be the
only country in Africa that won’t roll out treatment. Lewis referred to the
South African government response of ignoring the epidemic and advocating
naturalist remedies as “the lunatic fringe”.)
Stephen Lewis is
finishing his five-year appointment as the UN special envoy to Africa. It is natural to wonder if his termination could
be caused by his outspoken criticism of the governments of the African
countries. He said that, it he has any input into the naming of his
replacement, he would earnestly request that the replacement be an African, and
preferably an African woman.
It has been 25
years since this pandemic first appeared in our world and was called ACQUIRED
IMMUNODEFICIENCY SYNDROME: AIDS.
In 1981 a viral
origin was identified as a likely cause. In ’83 and ’84 we learned that it was
a new virus, HUMAN IMMUNODEFICIENCY VIRUS, HIV, that causes AIDS.
Great strides
have been made in learning how to control the virus, and how to strengthen the
defence against Aids. But in Africa,
only 17% of the population in immediate need, in the hardest hit regions, is
receiving these life saving drugs.
The job now is to
continue the search for a cheaper, more effective treatment.
The ultimate goal
is to find the Holy Grail, a VACCINE that will inoculate against this virus.
We will, in time,
find this cure. As the conference theme says, and as Steven Lewis demands, it
is TIME TO DELIVER
What has all this to do with me? with you?
Besides the
obvious Humanitarian Obligation that we should feel, is the very subjective
need to defend ourselves. A pandemic is an epidemic that involves the entire
globe. Think of the 1918 Spanish Flu.
Rotary knows,
through Polio Plus, that there is no eradication of polio as long as there is
any polio anywhere in the world. The same is true of HIV/Aids: as long as it
exists anywhere, the world is in danger everywhere and what it has to do with
us
is what Stephen
Lewis has called the indispensable advocacy of civil society, the political
will to do something.
History will
judge us in regard to the next 25 years. It is TIME TO DELIVER.
-30-
Our registration
packages were being held for us by Save the Children
and would be
delivered to us at a first meeting on Sunday.
In the meantime,
we did not have the electronic badge
and we would have
liked to use the Toronto transit pass that made every streetcar, bus and subway
available for easy on, easy off use.
We were already
aware that there were long distances to be walked and
any transit
alternative would be welcome.
So we lined up
with hundreds of others to register and spent the time being impressed with the
enormity of the Metro Toronto Convention Centre
and the amount of
infrastructure that was already apparent for the week-long meeting
850 were chosen from 16,000 applications: the criteria included geography; field of
work of HIV/AIDS, occupation, age, gender, HIV status.
Many of the people registering were not shirt-and-tie types.
Many were not
well dressed, not well equipped, marginalized,
with anti
establishment written all over them. It was not much of a stretch to think
of drug users.
During breakfast another day there was conversation between several aboriginal men and women that included the news that a dinner was being provided on Church Street for Conference delegates. The man talking said, “provided for us”
and I think he meant for us who are aboriginal. Then turning back to the table where only he and I were left, he very pointedly invited me to also come to dinner,
and made sure I knew how to find “519 Church”.
.
That was true of an accountant who, in the late
seventies, volunteered his time to be treasurer of the local branch of Save the
Children Canada. He was a haemophiliac. After he died his wife arranged to have
his blood tested and
learned that HIV was the virus that killed him and
that her death was to follow in a few years.
It has become obvious, however, that the Stigmas is
noticeably reduced
When treatment becomes available, even if
treatment has not been started.
A final Thursday night impromptu session
described a new
JOINT LEARNING INITIATIVE, which is to
engage
scholars, practitioners and policy makers
in mobilizing scientific evidence and
producing actionable recommendations
for addressing the needs of children. The principle of focusing on children is
intended to leverage the next breakthrough in tackling the Aids pandemic.
CIRCUMCISION
(male), demonstrably reduces the transmission of HIV Aids
(In an aside that is classic Lewis, he
told of visiting
a tribe in Swaziland in which the men are
circumcised.
Lewis is Jewish and the rest of his story
is
“so I said to them “ I am
circumcised” and we stood around talking in the comfortable brotherhood of the
circumcised.”)