KM1 Herbal formula trial
The Community-based
nature of the trial
This trial has been organised by people that have not had anything to
do with trial organisation previously.
The work involved is daunting and large, however we have proved that
it is possible to do if you are prepared to complete this work. It has
also shown the importance of building networks of support. The trial has
extensive support from a variety of sources (medical, scientific, statistical,
practitioners, industry, affected communities and trial participants).
The trial organisers hope that the precedent that this effort sets in Australia
will betaken up not only within the HIV/AIDS community but also within
the wider community of Australians, particularly those disempowered people
suffering from other illnesses (such as cancer)
Outreach to affected communities
There are two key reasons for the efforts of CTI to outreach to marginalised
PLWHA:
-
That it is the right thing to do. As with life in general, PLWHA on trials
tend to be male, middle-class, educated and living in certain areas (2010).
No effort to include all PLWHA means that you effectively exclude all other
people. As community-orientated HIV/AIDS activists, the trial organisers
believe that this is a significant issue. They recognise the diversity
of PLWHA and that particular efforts need to be made to reach hard-to-reach
groups, particularly as these groups are often unused to such efforts being
made. The best example of this is the application to have the trial available
to prisoners in NSW.
-
That inclusivity (of PLWHA otherwise excluded by default)results in a better
sample from which more accurate information on the formula's effects can
be drawn. The best example of this approach is with IDU, who are traditionally
excluded from trials because of their often 'chaotic' lifestyles. The trial
organisers approach is that people do use drugs and that this drug use
is usually secretive. We believe that it is more useful to approach the
situation sensitively with the aim of creating an confidential atmosphere
in which that information will be volunteered by trial participants who
would otherwise keep their drug use secret (for fear of being removed from
the trial). Issues around 'chaotic' lifestyles can then be dealt with inside
a more open and less judgmental framework.
The need for research into all possibilities for
HIV/AIDS therapy
Because of issues around money, power, influence, politics or simple
prejudice, research into simple, common-sense, non-drug solutions to problems
in HIV/AIDS therapy have become the poor cousin of 'advanced technology'
solutions. This is not simply about bad policy in terms of the vast majority
of the world's PLWHA (a major issue at the recent international AIDS Conference
in Vancouver), it is also relevant in the first world, particularly where
science has no answers (or where cost pressures on health-care systems,
largely generated by highly-expensive drugs, are becoming significant issues).
As the situation with resistance to existing anti-biotics has shown, the
momentum towards exploring solutions from alternative medicine can only
grow. Complementary therapy (CT) is already in mass use, it is estimated
to be a billion dollar industry. It is used heavily by PLWHA, who have
also indicated that access to information on CT is a priority concern.
This trial is a beginning to providing the scientific information from
which people can make effective treatment decisions. What is needed is
government funding, which could follow from effective joint lobbying by
a coalition of complementary therapy activists and affected communities,
and - as ACT-Up's 'Cure project' puts it - would result in educated access
to 'real treatments for real people'.
The context: post-Vancouver
If the promise of the new drugs is correct then PLWHA benefiting from
the new anti-virals will need immune system boosters or rather repairers.
We are talking here of people with extremely damaged systems. Science has
no effective immune system repairers and many mainstream scientists acknowledge
that this where herbal therapy comes into its own. Immunology has also
traditionally been the 'poor cousin' of virology within the realm of mainstream
HIV/AIDS research. If the formula is (as we believe it will be shown to
be) effective then it should not only be available for all PLWA to consider
as part of their treatment regime but must be promoted by HIV/AIDS organisations
to PLWHA (as other treatments are). |
