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Consensus Statement on Long-term Effectiveness Research

Spring 2000

Too Many Questions, Not Enough Answers: The Urgent Need for Long-term Effectiveness Research

Every day thousands of people living with HIV agonize over questions about whether or not to begin antiretroviral therapy.

And, along with almost everyone already on antiretrovirals, they worry about drug complications and resistance.

Are the answers to these questions different for women and men? For difference ethnicities? For different age groups? How about those with additional diseases, such as hepatitis, diabetes, cardiovascular disease, or addiction disorders?

These are issues that will affect the lives and health of hundreds of thousands of people, involve billions of dollars in annual medication and other health care costs, and influence the standards of HIV care for decades. Yet there is precious little scientific data to help us make these decisions.

We, the undersigned, call on the National Institutes of Health to address this situation immediately.

NIH must immediately commit significant financial and organizational resources to research these questions and develop, as expeditiously as possible, a detailed plan for that research. We are years behind where we should be and the lives and health of many are increasingly at risk.

As a first step in this process, NIH must immediately consult with a variety of advisors -- including members of the HIV/AIDS community, researchers, clinicians, statisticians, and members of the pharmaceutical industry -- to begin development of a long-term clinical research plan.

We insist upon full and immediate community participation in all stages of planning this research, utilizing the experience, knowledge, and commitment of HIV/AIDS community activists reporting back to the larger affected community.

2. Priority Areas for Long-term Effectiveness Research

We call on NIH to demonstrate leadership and expedite the design and funding of long term effectiveness research to answer the priority questions:

It is important that the answers are relevant to as many people living with HIV as possible, including women, the elderly, adolescents, African Americans, Hispanics, and other ethnic groups, as well as those living with hepatitis, diabetes, or other life complications.

3. Design of Long-term Effectiveness Research

Not every question may require a randomized clinical trial. Some, such as the elucidation of long-term complications and toxicities of antiretroviral therapy, may be better answered with observational databases.

Yet NIH is ultimately responsible for guaranteeing that these questions will be answered in an efficient, ethical, and scientifically rigorous manner.

Too much time has already been lost. The risk of continued delay is too great. We call on NIH to ACT NOW.


Zip Code

Please sign on to this consensus statement and fax it to 301.438.9753 and/or email it to, and/or send it to Women Alive, 1566 S. Burnside Ave., Los Angeles, CA 90019 and we will make sure it's counted.

Back to the Women Alive Spring 2000 Contents Page.

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