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by Connie Lu/PNN Media Intern
The sky is overcast and gray in San Francisco's Golden
Gate Park, where the "Access to Essential Medicines
EXPO" Exhibit is being held. There is an overall
melancholy ambience without the warmth and presence of
the sun's light, but at the same time, the cool breeze
against my face is a refreshing breath of air. There
are several people sitting on the grass and steps
enjoying the music from a nearby event as well.
I make my way towards a long tractor-trailer. But
before entering, I am instructed to spin a wheel with
several bright colors called, the "Wheel of
Misfortune" to determine which disease I would be
specifically learning about at the exhibit. The
needle points to a dark purple color, which indicates
a sleeping disease (Trypanosomiasis) in Africa. I am
given a laminated purple card with information about
sleeping disease.
The information on the card is not presented simply as
a straight list of facts, but it is written in a
narrative format. The narration has a more impacting
effect on me because I am learning about the disease
by associating a personal account to an actual person
and a photo of her face, as opposed to facts that are
not linked to the victims themselves. The card
describes the personal experience of an Ugandan woman
name, Bianga and how she acquires the sleeping
disease. While Bianga is in the process of getting
water, she is bitten by a tsetse fly, which transmits
the sleeping disease parasite into her body.
After reading how Bianga is infected with the sleeping
disease, I proceed to enter the exhibit inside the
48-foot tractor-trailer. Inside the trailer, the
lighting is dim and there are recorded sounds of
conversations playing in the background. The
conversations seem like they are taking place in a
busy market place or village. The laughter of young
children can also be quietly heard at times. However,
the clear, distinct ticking sound of a clock begins to
drown out the voices because of its sharp, rhythmic
pattern. I begin to wonder the origin and purpose
behind the ticking because it was being played at such
an intentionally audible volume.
I begin reading the display matching the color of the
purple card in my hand about sleeping disease. It
continues as a narrative about the progressive
worsening symptoms of the infected victim. During the
first stage of sleeping disease, Bianga begins feeling
weak. However, after 10 months her condition
drastically declines as the parasite travels through
her cerebral spinal fluid to invade her brain. At
this point, the symptoms vary from sleep disturbances,
mental illness, convulsions, erratic behavior, and
eventually falling into a coma of death.
Several black and white photos of the victims are also
next to the text on the display. They are lying in
bed and look like skeletons with skin, thin, pale,
weak, and in a great deal of pain. I found it hard to
look at the photos for very long, but seeing the
suffering victims made me realize the harsh reality of
people around the world enduring the pain of being
sick, but not being able to afford the cure for the
disease.
I continue walking towards the middle of the trailer,
as the sound of the ticking becomes louder and louder.
I see several clocks on a wall, none of which have
the purpose of showing the time of day, but each with
a saddening statistic of the number of people who die
based on a unit of time labeled underneath the clock.
For example, one child dies of malaria every 30
seconds. As I read each inconceivable statistic, the
ticking appeared to be getting louder in my ears. It
almost seemed to start echoing with each intimidating
tick of several lives being lost.
Towards the end of the trailer, there are more
displays explaining the history behind the various
diseases. At the last section of the trailer I meet
with Brigg Reilly, one of the exhibit's volunteer
doctors, who explains to me in more detail about the
manufacturing of the treatment for sleeping disease.
He explains that Melarsoprol was initially used to
treat sleeping disease, despite the fact that its
toxicity would corrode the plastic syringes used to
inject the treatment that would end up killing up to
one out of 10 patients.
However, a far more effective medicine called,
Eflornithine was introduced. Then in 1995, it was
discontinued because the manufacturers did not
considerate it to be a profitable medicine. But in
2001, Reilly explains, "The manufacturers suddenly
decide to produce this treatment again, but only after
discovering its cosmetic use for removing facial
hair." After Reilly revealed this to me, I realized
that the manufacturer is more willing to produce the
cure for sleeping disease for cosmetic reasons, as
opposed to saving the life of a suffering human being,
who doesn't have to means to pay for the treatment.
As I leave the exhibit, I am reminded of my grandpa,
who passed away from lung cancer. Like the many
victims of sleeping disease, he was also at a point
where I knew there was nothing else that could be done
to cure him. For my grandpa, the cancer had already
spread too far for the treatment to work. However,
the cure sleeping disease and other illnesses do in
fact exist, which places a great emphasis upon
creating awareness to gain support to provide
affordable treatment to the many people suffering from
such severe diseases.
*Note:
-This exhibit is sponsored by Doctor Without
Borders/Medecins Sans Frontieres (MSF), an independent
non-governmental international humanitarian
organization that delivers emergency medical care to
people in over 85 countries.
-Please refer to their website
(www.doctorswithoutborders.org) for more information
and an online petition to support devoting more
research towards developing affordable medicines for
neglected diseases. | 
