Edmonton DOT for HAART: lobbying for sustainable funding as a challenging but critical aspect of effective inner city HIV management

Objective: The Edmonton DOT for HAART Project began operation in May 2001. Its goal was to provide HIV treatment to homeless inner city people who were difficult to access using the traditional medical model. The target was to enroll 40 participants at >85% daily HAART adherence by May 2004.

Method: The project was initially located in a nursing clinic. This structured environment produced poor enrolment and adherence results. Clients indicated that they would prefer a more casual setting and the project was relocated to a small inner city house. The resulting informal environment was attractive for clients and allowed for the development of a dynamic social network that encouraged participants to contribute to the success of the project. This participatory approach created a wide range of resources for dealing with addictive, emotional, nutritional and housing problems. These benefits formed powerful adherence incentives that did not involve the use of methadone. Their impact was further assessed by the Addiction Severity Index (ASI), SF36 questionnaire and client interviews.

Results: As of December 31, 2002 and one and one half years ahead of schedule, the project had accomplished the enrolment (42 clients) and adherence (>85%) objectives with this typically elusive population. The adherence incentives also contributed to lifestyle stabilization, psychosocial well being and high overall patient satisfaction.

Conclusion: The Edmonton DOT for HAART Project has succeeded with a difficult population. This required unconventional adaptations to accommodate the unique needs and preferences of an unconventional population. This presentation will describe the development of our participatory approach and discuss its difficulties and benefits.

The DOT for HAART Project was conceived by Dr. Peter Akai and funded by the Alberta Health and Wellness Initiative Fund. At the end of the Project approximately 70 HIV positive individuals were enrolled and they were able to maintain a treatment compliance of approximately 90%. This was crucial as treatment efficacy declines rapidly if compliance falls below this figure. Without the DOT for HAART Project, not only would the disease of these individuals have progressed to its inevitable end, but their lack of treatment would have contributed to the spread of HIV.

From its inception, the DOT for HAART Project involved participants in the decisions to design and implement treatment. Participants indicated that although they were concerned about their disease they, were so consumed with the effort of dealing with life's necessities that they had no reserves left to address it. Project participants (with a few exceptions) were involved with intravenous drug use and lived lives that were unstable and chaotic. They indicated their most immediate problems were finding a place to sleep and something to eat. We therefore decided to locate the project in a house in the inner city. With the participant's involvement, we transformed this house into a day home open six hours daily and offering a safe place to meet, shelter from the elements, food, a small daily financial stipend, a sense of community and a recognition of their innate worth. Participant's attended regularly because it provided them with the resources necessary to their lives and because it became an island of stability in an otherwise chaotic world. We then took advantage of their regular attendance to administer their HIV medication. This worked so well that for many of the participants their HIV viral loads became undetectable. This not only contributed to their health but also reduced the risk of transmission of HIV to others. It is noteworthy that from the participants' viewpoint they attended the house not primarily to deal with their disease but to obtain resources necessary to function in life.

In developing this project, we decided to involve participants in all decisions. This gave us access to knowledge that was outside of our own experience and also promoted a sense of ownership among participants. In addition, this greatly facilitated implementation of decisions. Of particular note is the effect that this approach had on 'staff meetings". These were made public and all participants were invited to attend. The meetings became egalitarian as every voice was heard and further meant that participants were actually "talked to" rather than being "talked about".
This was of particular importance to a group of individuals with a record of childhood abuse, poor education, alcoholism, drug abuse, poverty and homelessness, and who did not have a history of success. Indeed, we believe that the key reason for their unprecedented success in this project was their inclusion in its formation and ongoing operation.

PHILOSOPHICAL BASIS

The essence of democracy is that individual citizens have rights and that governments (persons in authority) must respect those rights. This may best be summed up in the words of Thomas Jefferson who wrote, "We hold these truths to be self evident, that all men (people) are endowed with certain unalienable rights including life, liberty, and the pursuit of happiness. That to ensure these rights, governments are instituted among men (people) deriving their just authority from the consent of the governed". Effective democracy ensures people affected by decisions have a voice in how those decisions are reached. This principle is so central to our culture that we often don't question it. So why then do we debate the idea of including drug users in decision-making when neglecting to do so would be alien in most other areas of society? Part of the answer may lie in the way we define addiction, drug use, and drug users. The basis drug addiction may involve an individual lack of resources or tools necessary to create and maintain a successful life. The Canadian Population Health Initiative specifies nine determinants of health: early childhood development, education, employment and working conditions, food security, health care services, housing, income and its equitable distribution, social inclusion and social safety nets. When individuals lack access to any of these nine determinants, they attempt to cope as best they can. Drug addiction may be viewed as a response (attempted solution) to these externally imposed deficits or as a personal or individual problem onto itself. The manner in which drug addiction is defined holds tremendous implications. The responsibility for providing everyone with appropriate access the determinants of health lies with society as a whole and it would usually imply that people involved in a particular problem be also involved in planning and implementing solutions. However, if addiction is viewed primarily as an individual flaw, then responsibility for its solution is given to others who are "competent" since "defective" "drug abusers" cannot be given responsibility for their own destiny. The focus is more to correct the defective individuals and less on addressing the societal deficits that externally contribute to the problem. An example of this process can be seen in the administration of Indian Affairs which has been ineffective from its inception. This is not to say that he individuals working at Indian Affairs are incompetent or uncaring; nevertheless, much harm has been perpetrated on aboriginal peoples. The original mandate of Indian Affairs preordained that this harm would occur in spite of the individuals working in that department. This is because the people making decisions were making them about not fellow citizens, but about a specifically designated group who were outside mainstream society and therefore were not entitled to the rights and privileges of other citizens, including the right to input into decisions. Consequently, decisions were often made not with regard to what was best for the individuals affected, but rather, as to what was best for the organizations mandate. Conditions for native people have only begun to change once they themselves demanded control over their own lives. The process of one group of people having the power to make decisions over the lives of others, without being accountable, is actually the same process underlying dictatorship. No group of people in Canada would willingly accept this situation. Why then, would anyone accept this same process when applied to drug users or people with HIV/Aids?

In responding to your request for input, I believe that nothing much will change until people who use drugs are treated firstly as citizens with all the rights this entails. Otherwise, people in positions of power, will make the best decisions they can "drug users" - viewed as a special category of people who are somehow defective and without full and equal rights. The decisions will probably be of a "paternalistic" nature and will probably reflect the needs of the decision makers rather the needs of the people being acted upon.