PI Perspective #38
July 2004 View PDF En
español
Project Inform’s Research Advocacy Priorities
In the lead article of PI Perspective #36, “The
Cure: We Get What We Demand,” Project Inform announced
changes in treatment and research advocacy priorities. Response
to the issue was overwhelming and positive and many people wanted
more information.
Project Inform’s treatment and research advocacy goals are
to 1) Facilitate research toward a cure for AIDS; 2) Focus research
on issues facing people with advanced stage HIV disease; 3) Address
treatment access issues; 4) Address standard-of-care issues; and
5) Remain nimble and responsive to emerging information and issues.
Our strategies to meet these goals are varied and many. They include
but are not limited to:
- one-on-one meetings with leadership in industry, academia and at
the National Institutes of Health (NIH). These cross topic areas
from design of drug access programs to pricing to defining research
priorities and the mechanisms to serve them;
- discussions with individual scientists and/or companies regarding
“cure-oriented” research; goal is to first make sure
we understand the science involved, then to support and motivate
as needed and possible for continued development;
- hosting meetings of researchers to focus dialog and strategic planning,
as has been done through our Immune Restoration Think Tank (IRTT)
and other meetings on structured therapy interruptions (STIs);
- participating in committees, such as:
- fiscal year planning committees where the NIH’s Office of
AIDS Research (OAR) defines its funding priorities or study sections
where grant applications are reviewed and ranked;
- Federal Guidelines Committee where standard of care guidelines are
set;
- scientific review committees where programs are reviewed;
- protocol review committees where specific studies are reviewed;
and
- Food and Drug Administration Advisory Committees where new drugs
and technologies are evaluated and recommendations are made about
their use and licensure;
- speaking out in various venues, including scientific conferences
and forums on AIDS, FDA hearings, the press, etc. with the goal
of keeping the concept of “curing” AIDS on the radar
screen; and
- referring high potential/high risk projects to potential funding
sources.
The following chart does not include all the issues that Project
Inform is working on, but rather some representative examples of
issues, how we address them and ways others can get involved.
Finally, another goal of this activist effort is to educate people
about treatment activism and inspire people to become involved.
To that end, in addition to periodic updates through , articles focusing on various aspects of
our treatment advocacy work will appear in PI Perspective throughout
the year. Your input and involvement in the fight for a cure is
always encouraged and welcomed.
|
The issue |
What we’ll do about it |
How we’ll do it |
What can others do? |
|
Potentially
effective treatments and strategies often languish because
researchers across disciplines rarely share data and ideas
or think together strategically to solve problems. |
Engage
top HIV and other disease researchers in creating strategic
plans for collaboration and the creation of new research studies. |
Project
Inform’s IRTT is an internationally acclaimed think
tank, including thought leaders inside and outside the field
of HIV to brainstorm on ways to repair the immune system of
people with advanced stage disease. |
Support
Project Inform and/or individual research institutes. |
|
Identify funding
mechanisms for new research coming out of the strategic plans.
Influence funding mechanisms toward research of interest to
the community. |
Foundation for
AIDS and Immune Research (FAIR) has been instrumental in providing
seed funding for many projects borne out of Project Inform-sponsored
events on topics ranging from salvage therapy to STIs.
Project Inform staff sits on the Board of Directors
and the Scientific Advisory Board for FAIR as well as co-sponsors
events with FAIR.
The NIH funds the majority of HIV research worldwide. Most
NIH research is conducted through the National Institutes
of Allergy and Infectious Disease’s (NIAID) Division
of AIDS (DAIDS).
Project Inform meets with OAR and DAIDS staff to discuss priorities
and work to influence funding decisions and programs in accordance
with the needs of people with HIV. |
Donate to foundations
that fund AIDS research, like FAIR.
Supporting funding mechanisms like FAIR allows research to
get off the ground quickly and move forward. |
|
Share ideas
generated by the IRTT with research institutes like the Institute
of Human Virology (IHV), individual researchers, other activists
and PI constituents. |
The IHV and
the University of Baltimore is an integrated HIV research
effort formed under the leadership of Dr. Robert Gallo. It
is one example of the types of research efforts Project Inform
engages in, through one-on-one interaction with researchers
to providing input into scientific priorities of the institute.
Creative, imaginative scientists working together hold the
key to a cure. Maintaining relationships with the scientific
community, fostering collaborations, providing community input
into priorities and helping to remove barriers to moving innovative
ideas forward are among the most important strategies activists
can use to accelerate the pace of discovery toward a cure,
outside of working to increase the resources for this effort. |
Serve on local
Institutional Review Boards (IRBs) that review the ethics
of research and the adequacy of informed consent documents.
Get involved in local Community Advisory Boards (CABs) for
HIV research centers.
Educate yourself about new research opportunities and volunteer
for studies that are meaningful and of interest to you. |
|
Large networks
that establish scientific priorities and conduct research
on therapy, basic understandings of HIV and vaccine research
are inefficient and hinder progress toward a cure. |
In 2004 proposals
will be developed to “re-compete” nearly all of
the large networks that conduct HIV research. Project Inform
will influence the “re-competition” to serve the
needs of our constituents. |
Project Inform
and other organizations attended preliminary meetings, hosted
by DAIDS, on the re-competition issue.
Several groups are following its progress and providing comment.
Project Inform attended an inter-institute meeting debuting
re-competition issues at NIH. This provided opportunity for
Project Inform staff to hear concerns of other institutes
as we formulate strategy.
Project Inform will continue meeting with DAIDS leadership
over the next year. The scope of influence involves assessing
the structural needs of networks to support research toward
a cure and making sure these needs are addressed in funding
applications. |
Support Project
Inform. |
|
Potentially
important therapies often face roadblocks in drug development. |
Meet with pharmaceutical
and biotech companies that have novel therapies to treat HIV
to drug development plans and ensure they meet community needs
and identify obstacles to progress and work to remove them. |
As new therapy ideas are developed, Project Inform meets with industry
sponsors in order to:
-
learn about and provide input into drug development plans;
-
encourage research in HIV where plans don ’t include
an HIV component;
-
provide consultative input and/or assistance on overcoming
structural barriers to research (regulations, etc.); and
-
assure that companies provide early access programs that
meet community needs as research progresses.
|
Write or call your elected officials in Washington about the importance
of funding biomedical research at the NIH and in particular
the importance of HIV/AIDS research funding. |
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