20 September 2010
Dr. Anthony S. Fauci, M.D.
National Institute of Allergy and Infectious Diseases
National Institutes of Health
31 Center Drive, Building 31, Room 7A03
Bethesda, MD 20892
Dear Dr. Fauci:
The many complications and comorbidities faced by the aging population of HIV positive people in the United States constitute a rapidly growing medical crisis that has been woefully neglected by U.S. research efforts. According to the Centers for Disease Control, more than half of all HIV-positive Americans will be over the age of 50 by or before the year 2015. Although increasing evidence points to an earlier onset of age related conditions in people living with HIV little is known about pathogenesis, or proper methods to screen for, prevent and manage these conditions, or anticipate the infrastructure needed to deliver care and treatment for people suffering from these conditions.
We, the undersigned organizations, advocates, and people living with HIV, fear a reversal of recent scientific gains made against HIV may occur if this emergency is not immediately elevated to a top research priority by the NIAID and other NIH institutes and centers. We are extremely concerned that NIAID’s current research priorities underplay the potential long-term health impact of dysregulated T cell homeostasis in people with HIV, which in many cases is not addressed by ART-mediated viral suppression. We expect an increase in morbidity and mortality for people living long-term with HIV, particularly those who started antiretroviral therapy with a CD4 nadir below the threshold at which initiation of antiretroviral therapy is recommended—which includes almost everyone in resource-poor settings—and people with additional risk factors, regardless of chronological age.
The complex interactions between HIV infection, premature aging, immune dysregulation, long-term drug toxicities, coinfections, and comorbidites in various organ systems pose an unprecedented research challenge. This challenge can only be met through a coordinated, multi-disciplinary collaboration across research institutes, which has yet to be created. For example, the “Medical Management of Older Patients with HIV/AIDS” Program Announcement released in 2008 has yielded only three grants to date, totaling less than 1.5 million dollars in funding. Unless adequate funding is set aside, and an appropriate grant review process is in place, desperately needed research on HIV and aging will not occur. A business-as-usual approach to research will not work; this issue is urgent.
We urge the NIAID to immediately:
- Provide the necessary leadership to create a new funding initiative on HIV and aging, in partnership with other relevant Institutes and Centers within NIH. This initiative will identify existing funding that can be set aside for RFAs and RFPs starting in FY 2011, and include significant and long-term funding increases for HIV and aging research in the FY 2012 budget request to Congress;
- Issue a Request for Information and Ideas (RFI) and rapidly establish a special review panel on HIV and aging with reviewers that have expertise across all relevant disciplines in order to streamline the grant making process;
- Identify HIV and aging as a new and distinct future HIV/AIDS therapeutics research priority area for the upcoming network restructuring process;
- Establish one or more large-scale, well-characterized longitudinal cohort of people with HIV with matching HIV-negative controls, and seek out innovative approaches to assess AIDS and aging-related issues from within existing clinical trials networks, existing cohorts, collaborative groups, and Phase IV post-marketing trials to help develop and standardize biomarkers, and characterize relevant AIDS and aging events;
- Create a new aging working group within the AACTG, similar to the one created for lipodystrophy more than a decade ago, to spur new studies on badly needed interventions and preventive measures for aging related complications;
- Ensure cohorts of perinatally infected children are supported to investigate the incidence of, and risk factors for, aging-associated diseases. Furthermore, mandate coordination with the AACTG and INSIGHT networks to study therapeutic and preventive interventions in this unique population.
Lastly, we call on NIAID, along with the other institutes and centers, and in collaboration with the Office of AIDS Research, to immediately commit significant financial and organizational resources to develop a detailed and long-term research plan on HIV and aging. We insist upon full and immediate community participation in all stages of planning for this research, utilizing the experience, knowledge and commitment of HIV/AIDS community activists.
We hereby firmly request a meeting between the representatives of the Coalition for HIV and Aging Research and Policy Advocacy (CHARPA) and the leadership at NIAID, OAR, DAIDS, and all other relevant ICs to discuss the immediate course change in HIV and aging research at the NIH. Please contact CHARPA representative Lei Chou at 212-253-7922 ext.215 or email@example.com to coordinate this meeting.
Coalition for HIV and Aging Research and Policy Advocacy (CHARPA)
113 Organizational Signatories
2 God The Glory Women Supportive Housing Program
African Services Committee
AIDS Action Baltimore, Inc.
AIDS Action Committee of Massachusetts
AIDS Alliance for Faith and Health
AIDS Community Research Initiative of America
AIDS Education Global Information System ‐AEGIS
AIDS Foundation of Chicago
AIDS Legal Referral Panel
AIDS Policy Project
AIDS Project Los Angeles
AIDS Services for the Monadnock Region
AIDS Services of Dallas
AIDS‐Related Community Services
AIDS/HIV Health Alternatives
Alliance Against AIDS
Alliance For Hope
Allies Linked for the Prevention of HIV and AIDS (a.l.p.h.a.)
American Social Health Association
association el hayet des pvih
Association of Nutrition Services Agencies (ANSA)
Back to the Basics Please, Inc
Balm In Gilead, Inc.
Beacons of H.O.P.E.
Bolivian Network of People Living with HIV/AIDS
Boulder County AIDS Project
Case Western Reserve/University Hospitals of Cleveland AIDS Clinical
Trials Unit Community Advisory Board
Center For Health, Identity, Behavior & Prevention Studies, The
Steinhardt School, New York University
Central Illinois HIV Care Connect
Child Health And Social Ecology
Colorado AIDS Project
Common Ground ‐the WestsideHIV Community Center
Community Access National Network ‐CANN
Community HIV/AIDS Mobilization Project (CHAMP)
Community Information Center
Copasetic Women Over 50 Inc.
Dab the AIDS Bear Project
Delhi Network of Positive People
Dunshee House (home of seattle AIDS support group)
End AIDS Now
European AIDS Treatment Group
European Community Advisory Board (ECAB/EATG)
Fan Free Clinic
Florida Keys HIV Community Planning Partnership
Foundation for Integrative AIDS Research (FIAR)
Greater Love Tabernacle‐HIV Services
Greenwich House, INC., PCI Program
Guardian Health Association, Inc.
He Intends Victory
Hema Universal Life Community services
HIV and Hepatitis.com
HIV Dental Alliance (HIVDent)
HIV Program Hennepin County Medical Center
HIV/AIDS Law Project
HIV/AIDS Services for African Americans in Alaska
Impaact community advisory board, cape town, south africa
International Community of Women Living with HIV/AIDS (ICW)
International Foundation for Alternative Research in AIDS (IFARA)
Latino Commission on AIDS
LIGHT Health & Wellness Comprehensive Services, Inc.
Long Island Minority AIDS Coalition
Massmer Associates LLC
National AIDS Treatment Advocacy Project ‐NATAP
National Association of People with AIDS
National Centre in HIV Epidemiology and Clinical Research, University
of New South Wales, Sydney Australia
New Destiny Recovery Ministry, Inc
New Jersey Association on HIV Over Fifty
New Mexico AIDS Services
Nightsweats & T‐cells, Co
NYC AIDS Housing Network (NYCAHN) / Voices Of Community
Activists & Leaders (VOCAL)
Okaloosa AIDS Support and Informational Services, Inc (OASIS)
Older Women Embracing Life (OWEL)
Out With Cancer ‐The LGBT Cancer Project
Pacientes de SIDA pro PoliticaSana
Peoples Alliance To Combat HIV/AIDS
Positive Opportunities, Inc.
Proyecto So Filadelfia
San Diego POZabilities
San Francisco HIV Health Services Planning Council
Servicios de la Raza
Sexuality Information and Education Council of the U.S. (SIECUS)
South Central Educational Development, Inc
STOP AIDS Project
Test Positive Aware Network/Positively Aware Magazine
Total Health Awareness Team
Transexuales y Transgeneros en Marcha
Treatment Action Group
Treatment Education Network
UMC AIDS Ministry of West Ohio Conference
Uncle Rock’s Place
Victoria AIDS Resource & Community Service Society
Wayne State University Community Advisory Board
Women Together for Change
Zephyr L.T.N.P. Foundation, Inc.