...
I'm all for some good fist-shaking when appropriate, but I also think we need to keep our eye on our goals. And right now, surely it's more beneficial to steer the NIH toward productive research instead of putting an end to such research entirely.
The petition is another form of fist-shaking, in addition to the phone calls, emails and other communications from the community which has (finally) garnered the NIH's attention - cumulatively they all pressure the NIH to review the research protocol.
And just to play devil's advocate a bit further while were demanding protocol change, perhaps the petition should include demands that the patient population be collaborators - 'no research about us, without us' type thing - or perhaps even a community-based research approach.
HIV patients have the MIPA Principles: Meaningful Involvement of People with HIV/AIDS - (it was previously GIPA, Greater Involvement of People with HIV/AIDS but evolved into 'meaningful' after HIV+ folks where used as necessary tokens on committees, boards, etc.)
https://www.afao.org.au/__data/assets/pdf_file/0017/12680/AFAO_MIPA_Policy_30413.pdf
"In 1994, the Paris Declaration formalised international commitment to enable greater
participation of people living with HIV (PLHIV) in the development of responses to HIV:
The success of our national, regional and global programmes to confront
HIV/AIDS effectively requires the greater involvement of people living with
HIV/AIDS ... through an initiative to strengthen the capacity and coordination of
networks of people living with HIV/AIDS. ... By ensuring their full involvement in
our common response to HIV/AIDS at all national, regional and global levels,
this initiative will, in particular, stimulate the creation of supportive political, legal
and social environments.
The Declaration committed the 42 signatory governments to develop and support structures,
policies and programs to facilitate the greater involvement of people living with HIV. As
understanding of the impact of GIPA has increased, the international commitment to
the GIPA Principle has grown.
In 2001, 189 United Nations member countries endorsed the
GIPA Principle as part of the ‘Declaration of Commitment on HIV/AIDS’. The Principle was
further endorsed by 192 Member states at the 2006 High Level Meeting on AIDS, where the 2006 Political Declaration on HIV/AIDS was unanimously adopted.
GIPA aims to realise the rights and responsibilities of people living with HIV, including the
right to self determination and participation in decision making processes that affect
the lives of positive people. GIPA brings the unique experience of living with HIV to policy and
program development: a contribution that is now understood to be vital to the development
of effective HIV responses.
GIPA extends modern thinking around meaningful “consumer”
participation in health programs and policy development and expands notions of
‘consultation’ to define ‘involvement’ as including full participation, including decision making
roles related to HIV/AIDS research, program development, policy making, advocacy and
activism. GIPA also increases the public profile of active, productive people living with HIV,
which impacts public stigma and discrimination against all people living with HIV."