This piece won 2nd prize in the Academic category of the 1st Terry Writing Challenge.
**The names of individuals mentioned in this paper have been altered to protect their identity.**
Coming out of a Stephen Lewis lecture earlier this year, I felt a strange mixture of despair and determination. His message was clear, AIDS is consuming sub-Saharan Africa. In this already suffering region of the world 1 out of every 14 people are living with HIV, totaling the incomprehensibly large number 25.8 million. We know how this disease has been exacerbated by poverty and lack of understanding of the disease. With the world in such an alarming state, the significant question for those of us who feel a call to arms is “what do we do now?”
The World Health Organization (WHO) has estimated that US$27 billion are available or have been pledged for HIV/AIDS globally from all sources for the three-year period 2005-2007. In the meantime the actual amount needed to effectively fight AIDS is $45 billion.
Because of this gap millions more will continue to follow the 3.1 million people who died last year and the 25 million people that were killed by this disease since it was recognized in 1981. The obvious question left by the inadequacy of funds is “how best can we spend the little money devoted to fighting HIV/AIDS?”
Some of those considering this question have turned the matter to a treatment versus prevention debate. They ask “is treatment a worthwhile use of money to fight HIV/AIDS or should whatever small and inadequate funds be spent primarily on prevention?” More simply put, should the cost, time, money and personnel required using Anti-retroviral therapy (ART) to treat those already with AIDS be constricted in order to concentrate on stopping HIV/AIDS from spreading any further? The answer to this question is not as simple as one would like it to be. However, it is of fundamental importance to our society and a matter of saving millions of lives.
Being a scientist in training, I have a love of simplification. Something in me is always yearning to take the natural world and extract a grandiose conclusion that can be used to explain all phenomena and base most of my decisions. Force is equal to the product of mass times acceleration. All of life is coded by a sequence of four nucleotides. Simple. Amazing. Universal.
And so turning to the crisis of HIV/AIDs, it seems to me that the obvious principle should be to save the greatest number of lives possible. For a number of years this conclusion led me to believe that treatment is secondary and less effective at saving the world than prevention.
In 2002, a paper came out in the Lancet with a similarly cut and dry conclusion. It stated that “for every 1 life-year gained with [highly active anti-retroviral treatment] HAART, 28 life-years could have been gained with prevention.” They continued saying that “it follows that as long as population coverage with good prevention programmes is low, money available for prevention should not be allocated to HAART.”
I felt affirmed. It was nice.
But over the years as I invested more and more thought to the question eventually this simple answer did not seem to be enough, and I sought more information to flesh out a satisfying answer. As I did so, I began to realize that inherent in the prevention over treatment approach is a lack of hope. To advocate this position is to believe that a life with AIDS is a life already wasted.
One of the flaws in the Lancet paper is that it failed to account the rapid fall in price of treatment, due to the competition created by generic drug producers. As noted by Paul Farmer in the World Health Organization Bulletin “in our Haiti project, ARV prices dropped 90% during the year in which that claim was made.”
In addition to this, prevention of HIV/AIDS from pregnant mother to child can be achieved through treatment of the mother using HAART. Considering that HIV infection levels among pregnant women are 20% or higher in the six African countries Botswana, Lesotho, Namibia, South Africa, Swaziland and Zimbabwe treatment is much more integral to fighting and preventing aids than the Lancet article conveyed..
But ultimately this question is about the lives of real people. When one of these lives touched mine, my conclusion became final.
Howard was man living with HIV/AIDS that I met in the fall of 2005. When I first met him he was so energetic and eager to speak that he hardly took a breath. Howard was in a wheelchair after an operation but he was determined to walk again. In the meantime, I was introduced into his life as a volunteer cleaning lady. As our friendship progressed I realized that Howard loved to always be in passionate speech over something. He would tell me that I was a very curious young women but I believe it was his natural openness that resulted in our connection.
Stories were central to our friendship and Howard had a tale to tell about nearly everything under the Sun. He was a talented artist and once we spoke about the meaning of his work. The themes were Buddhism inspired and centered on the cycle of life emerging from death and waste. Another time we spoke about the Vietnam war and how our lives were differently affected by it. Once in a conversation about the power of perspective, he told me of the strange old Russian man he met on a boat who was deeply in love with his old wrinkly wife. One of my favourite stories of all was how he snuck into a prestigious New York art school and then won scholarships later on. It spoke the best of his resilience, strength and character.
Howard had acquired AIDS way back in the beginning of the disease in the 1980s. He would say sadly to me “we didn’t really know what it was at the time.” Outwardly a gentle person, Howard was a fighter and had managed to survive for twenty some odd years. Until the last year of his life, Howard was an important member of the community and participated in programs helping other who needed him. During his hospitalization, I met many strangers at St. Paul’s Hospital who spoke of Howard as a teacher and a caring friend. It was because of him that I truly considered for the first time what it meant to be living with AIDS. While I had always imagined a life of weakness and struggle, Howard showed me that AIDS was about living life even more fully and courageously. Eventually I learnt I was wrong to associate HIV/AIDS with suffering alone.
This is not to minimize the pain of HIV/AIDS. Not only do those with AIDS suffer from a variety of opportunistic infections due to their weakened immune system, the drugs themselves can cause side effects such as facial wasting, hyperbilirubinaemia, lactic acidosis, lipodystrophy and neuropathy.
And yet ART is required to prolong lives. It was not available when Howard had first acquired the disease and ignorance was not bliss. Howard told me about the fear and confusion he felt when he watched his friends die all around him. Nurses and doctors frightened and unprepared would leave the sick to die slowly, dirty and uncared for except for some few friends that would come in to do what they could. Howard was scared too.
And even though things are different now in North America, ignorance is still killing people elsewhere. While working in Cameroon with Engineers without Borders a good friend of mine also assisted in some HIV/AIDS awareness projects. In his work he came across a man who told him that AIDS was a disease created by the “white man” in order to kill the “black people” and that the disease was placed inside condoms. The World Health Organization reports “of people living with HIV only one in ten has been tested and knows that he or she is infected.”
Yet despite the enormous obstacles that still need to be overcome, some real progress has been forthcoming in increasing AIDS treatment. Since the writing of the Lancet article, there has been much progress on lowering the price of ART, making the drugs more accessible to developing countries.
And because of the leadership of the Africa Group (Africa Countries) in confronting the World Trade Organization, in 2003 a waiver was placed on the Trade-Related Aspects of Intellectual Property Rights (TRIPS) agreement in order to allow member countries to export generically produced drugs under compulsory licensing. In other words, countries can now allow competing companies to produce patented anti-retroviral drugs for a lower price than the patent holders and then sell these drugs to developing countries in need. In December 2005 the waiver became a permanent amendment and I am proud to say that Canada is one of the developed countries that have amended national laws in order to permit the exporting of cheaper life saving drugs.
Fortunately, the prevention over treatment argument has not stopped the treatment efforts of the World Health Organization, which has continued to research how treatment helps to stem AIDS and how it is integral to the cause of prevention. In 2005 they discuss their findings in “Progress on Global Access to HIV Antiretroviral Therapy” which states:
Despite initial concerns that HIV treatment could divert both resources and attention away from prevention, it is now clear that treatment scale-up actually increases opportunities to undertake effective prevention. Evidence is emerging that the availability of ART leads to an upsurge in demand for HIV counselling and testing services.
These WHO findings show how treatment is essential for increasing awareness and fighting ignorance surrounding the disease by offering hope along side what would otherwise be a death sentence. Without the incentive of treatment it is easy to see how frightening and pointless it could seem to get tested for the disease or even to learn more about it.
In 2005 new research was published considering the question of treatment and prevention. Using an epidemiological method they predicted outcomes based on prevention centered, treatment centered and combined response scenarios for fighting HIV/AIDS. They sum their findings in this manner: “If treatment enhances prevention in a combined response, the expected benefits are substantial—29 million averted infections (55%) and 10 million averted deaths (27%) through the year 2020…. Prevention makes treatment affordable, and treatment can make prevention more effective.”
But, in the end, all of these findings will be irrelevant to those millions more that will die. What is truly lacking is not strategic thinking, or ability, but compassion and will power. After all, while there is an $18 billion short of what is estimated by WHO as required to combat AIDS, we live in a world of 497 billionaires (data from 2001) who have a combined registered wealth of $1.54 trillion. In 1990’s globally as a society we spent “$800 billion each year for military spending; $400 billion for tourism; $400 billion for cigarettes; $250 billion for advertising; $160 billion for beer; $85 billion for wine; $40 billion for golf.” So while so much wealth is wasted, as Paul Farmer writes, “The prevention versus- care argument has been the most glaringly false of the debates impeding AIDS work in the most heavily burdened countries… the lesson of the past decade is that such dilemmas are false.”
Even so it seems to me that how we address HIV/AIDS is essential to our identity as a civilization. It is about believing in the value of and worth of each individual life and having real hope. The challenge is whether we put in the work and energy in creating the action that truly corresponds to our deeper values.