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Project Inform's Research Advocacy Priorities

July 2004

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 Project Inform's Treatment Action Network (TAN) at, 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 IssueWhat We'll Do About ItHow We'll Do ItWhat 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.

Back to the Project Inform Perspective July 2004 contents page.

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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.