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<ul><li>HAYLEY MACGREGOR –  </li></ul><ul><li>KNOTS RESEARCH FELLOW, IDS </li></ul><ul><li>BETH MILLS –  </li></ul><ul><li...
Responding to the Problem: ARVs and Activism <ul><li>The problem </li></ul><ul><li>Political and economic transformation p...
Possible Other Contexts <ul><li>Oppressive political systems </li></ul><ul><li>Limited history of civil society activism <...
Activist Strategies <ul><li>SA’s context informed activist strategies in calling for ARV access and scale-up through the p...
A Longitudinal Perspective
Phase 1. Initiating the Scale-Up: 1998 – 2003 <ul><li>1998 – 2003: Activism around the science of HIV, AIDS and ARVs as ra...
Long Life - Body Maps
Bongiwe <ul><li>“ I used say HIV is like fire because of the pains I had. Now I see it as something controllable.”   </li>...
Phase 2. Sustaining the Scale-up: 2004 - 2010 <ul><li>In 2010 SA has the largest ARV program in the world (and the highest...
Sociality & Recognition of Salient Vulnerabilities <ul><li>Extended life with chronic illness now possible through the ARV...
Bongiwe <ul><li>I am glad that I have a house: it means that our government is doing something or is improving people’s li...
Thozama  <ul><li>My sister – her hands: “My sister is the one that gives me the support most of the time since I told her ...
Shifts in Scale-Up, Shifting Citizenship <ul><li>Shift in activism, and in biomedical activist discourse that linked possi...
<ul><li>[email_address] </li></ul><ul><li>[email_address] </li></ul>Thank You
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Beyond Scaling Up: HIV and citizenship

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This presentation was given at the 'Beyond Scaling Up: Pathways to Universal Access' workshop which was held at the Institute of Development Studies, Brighton on the 24-25 May, 2010. This event was co-sponsored by the Future Health Systems Research Programme Consortium and the STEPS Centre. Mills and MacGregor presented on HIV, citizenship and access to treatment.

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Transcript of "Beyond Scaling Up: HIV and citizenship"

  1. 1. <ul><li>HAYLEY MACGREGOR – </li></ul><ul><li>KNOTS RESEARCH FELLOW, IDS </li></ul><ul><li>BETH MILLS – </li></ul><ul><li>KNOTS DPHIL STUDENT, IDS </li></ul>The ARV Scale-Up and Citizenship Dynamics in South Africa
  2. 2. Responding to the Problem: ARVs and Activism <ul><li>The problem </li></ul><ul><li>Political and economic transformation parallel to burgeoning HIV epidemic in 1990s and no access to ARVs through the public health system. </li></ul><ul><li>The context </li></ul><ul><li>Key factors that enabled an activist response to ARVs: </li></ul><ul><li>New political space conducive to lively civil society – fostered through liberal constitution that secured gay rights and stipulated health as a human right. </li></ul><ul><li>SA’s history of activism </li></ul><ul><li>International networks </li></ul>
  3. 3. Possible Other Contexts <ul><li>Oppressive political systems </li></ul><ul><li>Limited history of civil society activism </li></ul><ul><li>No gay rights </li></ul><ul><li>Ineffective state mechanism through which to provide public health care </li></ul>
  4. 4. Activist Strategies <ul><li>SA’s context informed activist strategies in calling for ARV access and scale-up through the public health system </li></ul><ul><li>Legal coalitions to challenge state legislation </li></ul><ul><li>Formed international coalitions to shame and condemn the government </li></ul><ul><li>Legal action against pharmaceutical companies to procure generic ARVs and treatment for PMTCT </li></ul><ul><li>Bodies and politics made visible: sick and dying bodies bore witness to absence of ARVs in the public sector; healthy bodies bore witness to power of ARVs through the MSF trial. </li></ul><ul><li>Struggle over ‘the scientific governance of AIDS’ cast the activist AIDS response in strongly biomedical terms – life = access to biomedicine. Fuelled patient-expertification discussed later. </li></ul>
  5. 5. A Longitudinal Perspective
  6. 6. Phase 1. Initiating the Scale-Up: 1998 – 2003 <ul><li>1998 – 2003: Activism around the science of HIV, AIDS and ARVs as rationale with aim to compel state to INITIATE scale-up </li></ul><ul><li>2003: ARV scale-up legislated by cabinet </li></ul><ul><li>2004: ARV scale up initiated in the public sector </li></ul><ul><li>Activist response over this period generated particular forms of ‘therapeutic citizenship’: </li></ul><ul><li>creating ‘expert patients’ </li></ul><ul><li>treatment literacy programs </li></ul><ul><li>Discourse of ‘responsibilised health citizens’ </li></ul><ul><li>These activist strategies pushed for i. Equitable scale-up; </li></ul><ul><li>ii. Increased pace of scale-up </li></ul>
  7. 7. Long Life - Body Maps
  8. 8. Bongiwe <ul><li>“ I used say HIV is like fire because of the pains I had. Now I see it as something controllable.” </li></ul><ul><li>(Interview with Bongiwe, 2008) </li></ul>
  9. 9. Phase 2. Sustaining the Scale-up: 2004 - 2010 <ul><li>In 2010 SA has the largest ARV program in the world (and the highest national prevalence) </li></ul><ul><li>With end of Mbeki era and greater collaboration, rather than contestation, over severity of the epidemic and importance of a national response, there has been a shift in focus around sustaining and supporting the scale-up of ARVs. </li></ul><ul><li>New treatment guidelines introduced in March 2010 </li></ul><ul><li>New recognition of multiple ramifications of ARVs, including side-effects and challenges to adherence </li></ul>
  10. 10. Sociality & Recognition of Salient Vulnerabilities <ul><li>Extended life with chronic illness now possible through the ARV scale-up </li></ul><ul><li>This has engendered shifts in focus of activist organisations </li></ul><ul><li>Experiences of members on the ground at advice offices highlight key issues and can shape practice </li></ul><ul><li>Reconstitution of the AIDS Law Project and emergence of the Social Justice Coalition. </li></ul><ul><li>New activist agenda with explicit aim of addressing broad inequality and ‘scaling-up’ access to socio-economic rights like housing and education in addition to health, also stated as ‘rights’ in the constitution. </li></ul><ul><li>Requires different strategies and no easy victories </li></ul>
  11. 11. Bongiwe <ul><li>I am glad that I have a house: it means that our government is doing something or is improving people’s lives. But now we are now facing a lot of crime in our area. .. </li></ul><ul><li>I am afraid ... of staying alone in this house. This place is not safe. Each and every night you will hear people walking around your house. ..When we first arrived here, our doors were kicked though they never came [in] to my house. The worse thing that had happened [was that] a person was killed, a girl was raped and killed [and] her mother and father [and] brother was killed. They were gunned. </li></ul><ul><li>(Interview with Bongiwe, 2008) </li></ul>
  12. 12. Thozama <ul><li>My sister – her hands: “My sister is the one that gives me the support most of the time since I told her that I am HIV positive. If I feel any pain in my body, she goes out of her way to get me something to make me feel better most of the time.” (Thozama, photograph annotation, 2008) </li></ul>
  13. 13. Shifts in Scale-Up, Shifting Citizenship <ul><li>Shift in activism, and in biomedical activist discourse that linked possibility of life to accessing biomedicine - ARVs no longer considered the ‘magic bullet’ in isolation from context </li></ul><ul><li>Space for nuanced approach to health </li></ul><ul><li>Calls by ‘patient experts’ for state, and civil society, to recognise multiple subjectivities and socio-economic contexts that constrain health beyond disease. </li></ul><ul><li>“… sometimes I forget that I have HIV anyway, I am just taking this medication, I am used to it.” (Interview with Nondumiso, 2008). </li></ul><ul><li>New questions: how can therapeutic options be made more effective; which treatment guidelines are most effective; how can life be made more equitable beyond scaling up ARVs? </li></ul>
  14. 14. <ul><li>[email_address] </li></ul><ul><li>[email_address] </li></ul>Thank You
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