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The case of patients’ participation: why it matters?

The case of patients’ participation: why it matters?. Mauro Guarinieri mauro@eatg.org. One of the characteristics of the response to HIV/AIDS has been the recognition that PLWHA must play a central role in designing, implementing, and evaluating all aspects of the response.

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The case of patients’ participation: why it matters?

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  1. The case of patients’ participation: why it matters? Mauro Guarinieri mauro@eatg.org

  2. One of the characteristics of the response to HIV/AIDS has been the recognition that PLWHA must play a central role in designing, implementing, and evaluating all aspects of the response.

  3. We condemn attempts to label us as victims, a term which implies defeat, and we are only occasionally patients, a term which implies passivity. We are “People With AIDS” The Denver Principles, Statement by the advisory committee of the People with AIDS Coalition, June 1983

  4. Nothing about us without us: • PLWHA have the right to form caucuses to choose their own representatives, their own agenda and to plan their own strategies. • PLWHA should be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations. • PLWHA should ne included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

  5. Nothing about us without us: • The principle of the “Greater Involvement of People Living with HIV/AIDS (GIPA) was formally recognized at the 1994 Paris AIDS Summit, when 42 national governments declared that GIPA is critical to ethical and effective national responses to the epidemic. • In 2001, the UN Declaration of Commitment on HIV/AIDS endorsed the GIPA principle. • GIPA is part of the Guiding Principles of the “3 by 5” Treatment Initiative.

  6. Nothing about us without us[?] • GIPA cannot be fully realized without meaningfully involving drug users: • drug users still vastly over-represented among the people who newly contract HIV and HCV. At least in part, this can be attributed to the prevailing emphasis on law enforcement in drug policy. • drug users still under represented in governing bodies of HIV/AIDS and other organizations---token representation and discrimination against active users still to be fully addressed within the larger AIDS movement.

  7. Why users must be more involved: • Drug users have the right to active, free, and meaningful participation within the AIDS movement, their voices need to be heard to shape effective responses to HIV/AIDS • Users themselves are best able to identify what works in a community that others know little about, they have significant knowledge on what constitutes a good program. • Plenty of evidence of the benefits of greater involvement of users

  8. ARV4IDU • In February 2004, over two hundred people and organizations from around the globe, called on the Director General of the WHO to ensure the equal involvement of active drug users in the scale-up of antiretroviral therapy proposed by the WHO and take a leading role in recommending governments to make healthcare principles a priority over the law enforcement approach to illicit drug use.

  9. ARV4IDU • A large coalition of PLWHA, human right activists, drug users and harm reduction advocates from all over the globe pushed for the inclusion of methadone and buprenorphine on the WHO’s list of essential drugs and medicines as a part of a comprehensive approach to HIV/AIDS care.

  10. (July 11, 2004   Bangkok) Drug users and AIDS activists march together before the Opening Day of the XV International AIDS Conference

  11. (July 11, 2004   Bangkok) Thai Prime Minister Thaksin Shinawatra "silently heckled" by Drug users and AIDS activists during his speech on the Opening Ceremony of the XV International AIDS Conference.

  12. (October 12, Kaliningrad), FrontAIDS activists chained themselves to the entrance of the City Hall. The activists had placard and posters with " Our deaths is your shame”

  13. Methadone and buprenorphine were approved for inclusion on the WHO Model (complementary) List of Essential Medicines in March 2003. • The issue was first raised in November 2003. • Another significant achievement is the introduction of a new section in the WHO Model List of Essential Medicines, namely - medicines used for substance dependence. Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever does Margaret Mead, 1901-1978

  14. But why also involved in shaping research?---BMJ. 2001 • substantial evidence that there are mismatches between the research that gets done and the research that patients would like to see done • Input from the community is crucial to: • refine research questions • develop patient centred outcome measures • make a complex trial comprehensible to patients • provide [a] link to consumer network

  15. Some negative comments from investigators---BMJ. 2001 • Time consuming---the process took much longer • No such thing as a ‘consumer representative’ • There is a conflict between the role of a patient advocate and the need for a reliable assessment of cost effectiveness • «They were extremely naive about the research process and funding problems»

  16. The clinical setting---why patient participation matters so much? 900 800 700 600 500 400 300 200 100 0 Methadone alone Methadone + EFV 600 mg/die Methadone concentration (ng/mL) 0 4 8 12 16 20 24 Time (h) Clarke BJCP 2001

  17. METH DOSE WITHDRAWAL SYMPTOMS METH CONCENTRATION ( ng.mL-1) Boffito et al. 2002

  18. The clinical setting---why patient participation matters so much?

  19. You never get anything unless you ask for it---and you need to know! • Advocacy is always driven by knowledge! • e.g. what I am treated with? • Is it going to help me? • Is this going to make my life better? • Is this going to make my life worst? • Patients have the right of equal dialogue with their care givers, that also improves treatment outcomes

  20. Challenges • lack of skills and preparation for users • lack of leadership • lack of representation • difficulty of acknowledging drug use (and HIV status) publicly • organizations still unprepared • questions of sustainability

  21. Recommendations • to give credit to users for their contribution • to create the conditions allowing greater participation by active users • to build long-term capacity for users and service organizations involving users • to advocate for government funding for local and national drug user organizations

  22. “Our continued existance depends on just how angry you can get” 1,112 and Counting, Larry Kramer, March 1983

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