The case of patients participation: why it matters

1
The case of patients participation why it
matters?

• Mauro Guarinieri
• mauro_at_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
  WHOs 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

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• (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.

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• (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

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• 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
  its the only thing that ever does
• Margaret Mead, 1901-1978

17
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

18
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

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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
21
WITHDRAWAL SYMPTOMS
METH CONCENTRATION ( ng.mL-1)
Boffito et al. 2002
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The clinical setting---why patient participation
matters so much?
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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

24
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

25
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

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• Our continued existance depends on just how
  angry you can get

1,112 and Counting, Larry Kramer, March 1983