Winter 2005 - advocacy leading lines

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                                A Program of Cicatelli Associates, Inc.

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People Living With AIDS/HIV

                                                                          New York, NY 10018

Winter 2005, N° 14                                                                                                                                                                 leading lines           advocacy            outreach           community
leading lines

                                                                                                                                         CONTINUING CRISIS DEMANDS THAT
                                                                                                                                         REAUTHORIZATION BE A TOP PRIORITY
                                                                                                                                         Strengthening the Circle of Care:
                                                                                                                                         The Case for Ryan White CARE Act Reauthorization
                                                                                                                                         by Communities Advocating Emergency AIDS Relief and AIDS Action
                                                                                                                                         The Ryan White Comprehensive AIDS Resources Emergency Act (CARE) is the heart
                                                                                                                                         of the nation’s response to the domestic HIV/AIDS epidemic. Each year, Ryan
                                                                                                                                         White CARE Act-funded programs serve over 500,000 people in all 50 states, the
                                                                                                                                         District of Columbia, Puerto Rico, and the U.S. territories, providing lifesaving
                                                                                                                                         anti-HIV medications and the medical care and support services people living with
                           SURVIVING AND THRIVING                                                                                        HIV/AIDS need to access and benefit from these powerful drugs.1
                           by John Hatchett                                                                                              Congress first passed the Ryan White CARE Act in 1990 to respond to the growing
                                                                                                                                         crises in communities hit hardest by the epidemic. President George W. Bush called
                           As readers of The Circle know well, one
                                                                                                                                         for reauthorization of the Ryan White CARE Act in his 2005 State of the Union
                           constant topic of conversation among
                                                                                                                                         address and previously called it “our nation’s most important AIDS legislation,
                           PWHA is the availability—or the
                                                                                                                                         [and it] has done a lot of good, a lot of good over the years.”2 The program con-
                           lack—of the services we need to stay                                                                          tinues to address the HIV/AIDS state of emergency in urban and rural communities
                           healthy and maintain a decent quality                                                                         alike, providing a much-needed safety net for uninsured and underinsured people
                           of life. Certainly the most significant                                                                       living with HIV/AIDS.
                           source of support for us to do that                                                                           The power of the Ryan White CARE Act to reach those most in need was echoed by
                           over the last 15 years has been the                                                                           the U.S. Government Accountability Office, which found that “CARE Act funds
                           Ryan White Comprehensive AIDS                                                                                 appear to be reaching groups of infected individuals that have generally been
                           Resources Emergency (CARE) Act. The
                           CARE Act is the largest source of dis-                                                                                                                                                               (continued on page 2)
                           cretionary spending on primary health
                           care and support services for people                                                                             LTI Community Advisory Board                                AIDS Institute Staff
                           living with HIV/AIDS, and each year it                                                                           Judy Deane Barton       Jack Patterson                      Sallie Perryman
                                                                                                                                            Diego Betancourt        Jairo Pedraza*                      Dan Tietz
                           reaches over 500,000 individuals with                                                                            Ruben Bonilla           Daphane Sanders                     NYC Office of
                           or at risk for HIV in all 50 states, the                                                                         Pamela Goodrich         Erwin Scott                         AIDS Policy Coordination

                           District of Columbia, Puerto Rico and                                                                            Kevin Huang-Cruz        David Singh                         Stephen Bailous
                           the U.S. territories. Most readers of                                                                            Michelle Lopez*         Robin Smith
                                                                                                                                            Karen D. Johnson-Murray Usungu Utshudi                      Program Staff
                           The Circle have utilized some program                                                                            Kim Nichols*            Michael Wade                        John Hatchett Director
                           that receives CARE Act funds: from                                                                                                                  *charter member          Petra Berrios Deputy Director
                           ADAP to case management services,                                                                                                                                            Greg Huang-Cruz Trainer
                                                                                                                                                                                                        Jenny O’Brian Program Assistant
                           primary care to substance abuse treat-
                                                                                                                                            The PWA LTI is a program of Cicatelli Associates Inc., supported by a unique collaboration between the
                           ment, home health care to mental                                                                                 New York City Department of Health and the New York State Department of Health, AIDS Institute.
                                                                                                                                            This newsletter was supported by Grants Nos. 2 H89 HA 00015 11 and 2 X07 HA 00025 11 from the U.S.
                           health care. The LTI itself is funded                                                                            Health Resources Services Administration (HRSA). These grants are funded through Title I and Title II of
                                                                                                                                            the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, as amended by the Ryan White
                           by Title I and Title II of the Act, and                                                                          CARE Act Amendments of 1996 & 2000 through the New York State Department of Health, AIDS Institute.
                                                                                                                                            Its contents are solely the responsibility of Cicatelli Associates Inc. and do not necessarily represent the
                                                                                                                                            official views of the funders.
                                                                                                          (continued on back page)

     CONTINUING CRISIS                          ues to exploit economic and health        tion, they represent 64 percent of
     (continued from front)                     care disparities, entrenched stigma,      people living with AIDS and 71 per-
                                                and the nation’s inadequate commit-       cent of new AIDS cases in 2003.12,13
     found to be underserved, including         ment to HIV prevention. According to      Women of color accounted for 84 per-
     the uninsured and the poor.”3              the Institute of Medicine, “HIV has       cent of new AIDS cases among women
     The Ryan White CARE Act’s                                                                 in 2003.14 The AIDS case rate for
     authorization expires on                                                                  African American men in 2003
     September 30, 2005.With nearly                                                            (103.8 cases per 100,000) was the
     one million Americans living                                                              highest of any subgroup and was
     with HIV, including over 405,000                                                          eight times the rate for white
     living with AIDS—more than at                                                             men (12.8) while the rate for
     any other time in the epidemic––                                                          Latino men (40.3) was more than
     and hundreds of thousands still                                                           three times the rate for white
     not receiving HIV-related health                                                          men.15 The AIDS case rate for
     care and medications, reautho-                                                            African American women (50.2)
     rization of the Ryan White CARE                                                           was 25 times higher than the
     Act must be a top priority for                                                            rate for white women (2.0) and
     the nation’s leaders.4,5,6                                                                the rate for Latino women (12.4)
     CAEAR Coalition and AIDS Action                                                           was more than six times the rate
     stand ready to work with Congress,                                                        for white women.16
     President Bush and the Administration,     continued its march into the most
                                                                                          In 2003, almost twice as many African
     and our community partners to reautho-     vulnerable populations in society: the
                                                                                          Americas with AIDS died compared
     rize the Ryan White CARE Act with          uninsured, racial/ethnic minorities,
                                                                                          with whites, a gap that has been
     enhancements that will strengthen the      those with substance use disorders
                                                                                          increasing since 1996.17,18 Researchers
     program’s ability to serve people living   and mental illness, homeless persons,
                                                                                          say the reasons include late diagnoses
     with HIV/AIDS in need.                     and unsupervised youth.”7
                                                                                          and inferior care, along with compli-
     Following are:                             The Centers for Disease Control and       cations because African Americans are
     • An overview of the U.S. HIV/AIDS         Prevention (CDC) estimates that there     more likely than whites to suffer from
       epidemic and                             were 850,000 to 950,000 Americans liv-    other illnesses.19
                                                ing with HIV in 2000 and that number
     • An explanation of the crucial role
                                                has likely risen.8 In 2003, more than
       that Ryan White CARE Act services
                                                405,000 people were living with AIDS,
       play in helping people living with
                                                the most advanced form of HIV dis-
       HIV/AIDS access HIV care and treat-
                                                ease.9 There are now more people
       ment and related support services.
                                                living with AIDS in the U.S. than at
       CAEAR Coalition and AIDS Action
                                                any other time in the epidemic. The
       have also developed a detailed set
                                                CDC predicts that more than 40,000
       of policy recommendations for the
                                                individuals in the U.S. are newly
       2005 Ryan White CARE Act reautho-
                                                infected each year with HIV, the virus
       rization, which are outlined in a
                                                that causes AIDS.10 While significant
       separate document entitled Policy
                                                advances in HIV treatment have sub-
       Recommendations for Reauthorization
                                                stantially reduced AIDS-related
       of the Ryan White CARE Act, 2005. The
                                                illnesses and deaths, an estimated 42
       recommendations and related mate-
                                                to 59 percent of all people living with
       rials are available at
                                                HIV/AIDS in the U.S. do not receive
       and                                                            Several studies have found that African
                                                regular HIV care.11
                                                                                          Americans are less likely to receive
     THE HIV/AIDS EPIDEMIC                                                                antiretroviral medications, including
                                                HIV/AIDS in the U.S. Increasingly
     IN THE UNITED STATES                                                                 one that found that African Americans
                                                Affects Communities of Color
     Well into its third decade, the AIDS                                                 and Hispanics were 24 percent less
                                                Although people of color represent
     epidemic in the United States contin-                                                likely to receive key anti-HIV medica-
                                                only 33 percent of the U.S. popula-

2                                                                                                            (continued on page 3)

    CONTINUING CRISIS                         HIV is associated with swifter progres-   treatment regimens. For many, the
    (continued from page 2)                   sion of HCV-related liver disease and     drugs cause serious side effects and
                                              cirrhosis, which may lead to limited      adverse reactions, while the lack of
    tions than whites at their initial        tolerance for anti-HIV medications. If    basic necessities, such as housing,
    assessment. The study also found that     infected with TB, people living with      food, and transportation, and an inad-
    African Americans waited 13.5 months      HIV are 100 times more likely to          equate support system, provide
    to receive these medications, as          progress to active TB than those not      obstacles to beginning or adhering to
    opposed to 10.6 months for whites.20      infected with HIV.23                      HAART treatment regimens.26
                                                                                        Adherence is crucial for the individual
    Nearly Half a Million People with         RYAN WHITE CARE ACT                       and for the larger public health. Fully
    HIV in the U.S. Receive No HIV Care       SERVICES INTEGRAL TO                      successful suppression of HIV in an
    The CDC estimates that 250,000 to         DELIVERING COMPREHENSIVE                  individual’s bloodstream requires high
    300,000 individuals diagnosed with        HIV/AIDS CARE IN THE U.S.                 levels of adherence of up to 95 per-
    HIV infection still receive no HIV-                                                 cent, while poor adherence can
    related medical treatment. Another        Lifesaving Drugs Also Present
                                              Tremendous Challenges                     contribute to development of drug-
    180,000–240,000 do not even know                                                    resistant strains of the virus that can
    they are infected, meaning that there     The advent of Highly Active
                                              Antiretroviral Therapy (HAART) to         then be transmitted to others. Drug
    are at least 430,000 people living with                                             resistance can also lead to individual
    HIV in the U.S. who are not receiving     treat HIV has dramatically altered the
                                              HIV/AIDS landscape by significantly       treatment failure and resistance to an
    HIV-related medical care.21                                                         entire class of drugs.27
                                              decreasing HIV-related illnesses and
    According to CDC Director Dr. Julie
                                              deaths in some populations ––between      CARE Act Titles WorkTogether to
    Gerberding, CDC’s Advancing HIV
                                              1995 and 2002, the age-adjusted HIV       Provide Comprehensive Network
    Prevention (AHP) initiative aims “to      death rate declined by 70 percent,
    open up the door to [HIV] testing so                                                of Medical Care and Support
                                              though those rates now appear to be
    that people can learn their status and                                              Services Necessary for
    get the appropriate treatment and                                                   EffectiveHIV/AIDS Care
                                              In an effort to standardize the use of    The Ryan White CARE Act’s multi-title
    prevention services that they deserve
                                              these powerful drugs, the U.S.            structure was designed to provide the
    and need.”22 Many, if not most, of
                                              Department of Health                                         comprehensive
    the estimated 200,000 people living
                                              and Human Services                                           medical care and
    with HIV in the U.S. whose HIV status
                                              convenes an ongoing                                          enhancing support
    is diagnosed through the CDC AHP ini-
                                              panel of experts that                                        services necessary
    tiative will turn to health care
                                              originally developed                                         for the complex
    providers funded through the CARE
                                              and regularly updates                                        treatment of
    Act for their HIV-related care.
                                              national HIV treat-                                          HIV/AIDS and has
    High Rates of Comorbid Infections         ment guidelines.                                             adapted well to the
                                              These guidelines call                                        integration of
    Many people living with HIV/AIDS also
                                              for early access to                                          HAART into
    suffer from other very serious, often
                                              medical care and                                             HIV/AIDS care. Care
    life-threatening conditions. The most
                                              treatment, including                                         and treatment
    common medical comorbidities associ-
                                              HAART. Sadly,                                                offered through
    ated with HIV are sexually transmitted
                                              approximately 40 per-                                        Ryan White CARE
    diseases, hepatitis C virus (HCV) and
                                              cent of HIV-infected                                         Act funded
    tuberculosis (TB). Additionally, HIV
                                              people in the U.S.                                           providers and the
    disease is frequently co-occurring with
                                              begin antiretroviral                                         AIDS Drug
    alcohol and other drug use and mental     treatment later than
    illness. About 25 percent of all people                                                                Assistance Program
                                              recommended by the                                           (ADAP) in Title II
    living with HIV are estimated also to     guidelines.25                                                help people living
    be infected with HCV and the rate of
                                              For those who initiate                                       with HIV/AIDS
    HIV and HCV coinfections among injec-
                                              treatment, the central                    determine and access the most appro-
    tion drug users is estimated to range
                                              challenge of HAART is adherence to        priate drug regimens.
    from 50-90 percent. Coinfection with
                                                                                                           (continued on page 4)   3

    CONTINUING CRISIS                             approximately 60,000 physicians,                   9    CDC, HIV/AIDS Surveillance Report, Vol.
                                                                                                          15, 2004.
    (continued from page 3)                       nurses, physician assistants, dentists
                                                                                                     10   CDC, HIV Prevention, Now More Than Ever,
                                                  and pharmacists each year.                              2001.
    Of course, the administration of drugs
    does not by itself result in successful       Lack of Appropriate Support                        11   Fleming, P., et al., HIV Prevalence in the
                                                                                                          United States, 2000, 9th Conference on
    treatment, and Title I and Title III pro-     Services Can Be a Significant                           Retroviruses and Opportunistic Infections,
    grams also provide the appropriate level      Barrier to Care                                         Abstract #11, Oral Abstract Session 5,
    of medical and support services needed                                                                2002.
                                                  Competing needs, such as food, nutri-
    to manage these complex drug regimens.                                                           12   Kaiser Family Foundation,The HIV/AIDS
                                                  tion services, and housing, and                         Epidemic in the United States, December
    Success of Drug Therapies Requires            barriers to care, such as lack of trans-                2004.
    Extensive Medical Services                    portation or childcare, limit access to            13   CDC, HIV/AIDS Surveillance Report, Vol.
                                                  HIV health care services. One study                     15, 2004.
    HAART and other components of                                                                    14   CDC, HIV/AIDS Surveillance Report, Vol.
    HIV/AIDS care require continuous              found that more than one-third of
                                                                                                          15, 2004.
    monitoring and follow-up by medical           people living with HIV in care post-               15   CDC, HIV/AIDS Surveillance Report, Vol.
    professionals. The selection and initiation   poned or went without care during a                     15, 2004.

    of an antiretroviral regimen are critical     six-month period because of these                  16   CDC, HIV/AIDS Surveillance Report, Vol.
                                                  competing needs and barriers. These                     15, 2004.
    elements of successful treatment of HIV                                                          17   CDC, HIV/AIDS Surveillance Report, Vol.
    infection. The programs supported by          barriers were also associated with sig-
                                                                                                          13, No. 2, 2002.
    Title I and Title III provide the infra-      nificantly greater odds for never                  18   CDC, HIV/AIDS Surveillance Report, Vol.
    structure in which people living with         receiving antiretroviral treatment.                     15, 2004.

    HIV/AIDS can take an anti-HIV/AIDS            Others went without food, housing,                 19   Villarosa, L., Backup of Patients With HIV
                                                  and clothes in order to pay for their                   Seen as Sepa-rated by a Racial Divide,
    drug regimen under proper ongoing                                                                     New York Times, August 7, 2004.
                                                  care.28 While the majority of Ryan
    medical supervision, including costly                                                            20   Institute of Medicine, Confronting Racial
                                                  White CARE Act Title I and Title III                    and Ethnic Disparities in Health Care,
    laboratory testing. Without the experi-
                                                  funds support HIV treatment, a por-                     2003.
    ence and expertise of these medical
                                                  tion of Title I funds provide key                  21   Fleming, P., et al., HIV Prevalence in the
    professionals, the powerful drugs used                                                                United States, 2000, 9th Conference on
                                                  support services, such as food and                      Retroviruses and Opportunistic Infections,
    to manage HIV/AIDS could easily be
                                                  transportation, as well as case man-                    Abstract #11, Oral Abstract Session 5,
    misused or insufficiently managed and                                                                 2002.
                                                  agement services to link people living
    result in serious consequences such as:                                                          22   Remarks, April 2003.
                                                  with HIV/AIDS to medical care and
    • viral resistance;                                                                              23   Institute of Medicine, Public Financing
                                                  support services.                                       and Delivery of HIV/AIDS Care: Securing
    • complications, including increased          1   HRSA, The AIDS Epidemic and the Ryan                the Legacy of Ryan White, 2003.
      risk of heart disease, high choles-             White CARE Act, Past Successes + Future        24   Kaiser Family Foundation,The HIV/AIDS
      terol, anemia, diabetes, kidney and             Challenges, 2004.                                   Epidemic in the United States, December
                                                  2   Remarks, June 23, 2004, Philadelphia, PA.           2004.
      pancreatic and liver dysfunction; and
                                                  3   General Accounting Office, HIV/AIDS: Use       25   McNaughten, A., et al., “Factors Associated
    • treatment failure.                              of Ryan White CARE Act and Other                    with Immunologic Stage at which Patients
                                                      Assistance Grant Funds, March 2000.                 Institute Antiretroviral Therapy,” 9th
    The distribution of drugs to patients                                                                 Conference on Retroviruses and
                                                  4   Kaiser Family Foundation,The HIV/AIDS
    not under the direct care of a medical            Epidemic in the United States, December             Opportunistic Infections, Poster Abstract,
    professional is ineffective and danger-           2004                                                473 M, 2002.
                                                  5   CDC, HIV/AIDS Surveillance Report, Vol.        26   Institute of Medicine, Public Financing
    ous. For individuals served by the                                                                    and Delivery of HIV/AIDS Care: Securing
                                                      15, 2004.
    Ryan White CARE Act, Title I and Title        6   Fleming, P., et al., HIV Prevalence in the          the Legacy of Ryan White, 2003.
    III programs provide access to the                United States, 2000, 9th Conference on         27   Institute of Medicine, Public Financing
    medical supervision necessary for suc-            Retroviruses and Opportunistic Infections,          and Delivery of HIV/AIDS Care: Securing
                                                      Abstract #11, Oral Abstract Session 5, 2002.        the Legacy of Ryan White, 2003.
    cessful treatment. The clinical               7   Institute of Medicine, Public Financing        28   Cunnuingham, W. E., et al.,“The Impact of
    management of HIV/AIDS, particularly              and Delivery of HIV/AIDS Care: Securing             Competing Subsistence Needs and Barriers
    the use of HAART, is the central focus            the Legacy of Ryan White, 2003.                     on Access to Medical Care for Persons with
                                                  8   Kaiser Family Foundation,The HIV/AIDS               Human Immunodeficiency Virus Receiving
    of training by the AIDS Education and             Epidemic in the United States, December             Care in the United States,” Medical Care,
    Training Centers (AETCs), which train             2004                                                1999, Vol. 37, No. 12.

4                                                                                                                           (continued on page 5)

    CONTINUING CRISIS                         providers and consumers of CARE Act          CAEAR Coalition was formed in the
    (continued from page 4)                   services. CAEAR Coalition also advo-         early 1990's by representatives of the
                                              cates for adequate funding for the           initial sixteen CARE Act Title I cities,
    ABOUT CAEAR COALITION                                                                  including Atlanta, Boston, Chicago,
                                              AIDS Drug Assistance Program (ADAP)
    Communities Advocating Emergency                                                       Los Angeles, New York, San Francisco,
                                              in Title II of the CARE Act. As a lead-
    AIDS Relief (CAEAR) Coalition repre-                                                   and Washington. In 1997, CAEAR
    sents more than 400 grantees under        ing voice in Washington, DC, for             Coalition and the National Title III
    Title I and Title III of the Ryan White   HIV/AIDS care and treatment, CAEAR           Coalition joined forces to provide
    CARE Act, including the 51 major met-     Coalition takes a leading role in the        coordinated national advocacy for
    ropolitan areas most adversely affected   annual federal appropriation advocacy        Title I and Title III resources. CAEAR
    by the HIV/AIDS epidemic, as well as      effort for CARE Act Title I and Title III.   Coalition incorporated in 1999 and is
                                                                                           tax-exempt under section 501(c)(4) of
                                                                                           the Internal Revenue Service code.

                                                                                           ABOUT AIDS ACTION
                                                                                           AIDS Action is a national organization
                                                                                           that advocates on behalf of people liv-
                                                                                           ing with HIV and AIDS and those who
                                                                                           serve them. AIDS Action is dedicated
                                                                                           to the development, analysis, cultiva-
                                                                                           tion, and encouragement of sound
                                                                                           policies and programs in response to
                                                                                           the HIV epidemic. AIDS Action seeks
                                                                                           to organize the HIV service communi-
                                                                                           ty, engage the U.S. government in the
                                                                                           ever increasing challenges of the HIV
                                                                                           epidemic, rethink the policies and
                                                                                           social dynamics that drive the HIV epi-
                                                                                           demic and educate all those who seek
                                                                                           to respond to it.
                                                                                           AIDS Action has been instrumental in
                                                                                           the development and implementation
                                                                                           of major public health policies to
                                                                                           improve the quality of life for the
                                                                                           estimated 850,000-900,000 Americans
                                                                                           who are HIV positive. AIDS Action col-
                                                                                           laborates with the greater public
                                                                                           health community to enhance HIV
                                                                                           prevention programs and care and
                                                                                           treatment services; and to secure com-
                                                                                           prehensive resources to address
                                                                                           community needs until the epidemic
                                                                                           is over.


        FEBRUARY 2005
        Dear Friends:                                                                           RYAN WHITE CARE
        The National Association of People with AIDS (NAPWA-US) needs your help to pre-         ACT SERVICES HAVE
        serve and strengthen the Ryan White CARE Act, which provides vital HIV/AIDS
                                                                                                POSITIVE IMPACT ON
        medical and support services to hundreds of thousands of individuals living with
                                                                                                HEALTH OUTCOMES
        HIV/AIDS across the country.
                                                                                                A study by HRSA-funded
        Congress will consider the future of the CARE Act this year as it develops legisla-
                                                                                                researchers at Columbia
        tion to reauthorize the program for another five years. In order to accurately
                                                                                                University examining the impact
        represent the needs and concerns of people with HIV/AIDS in America during this
                                                                                                of CARE Act-funded services in
        process, NAPWA is asking people with HIV/AIDS across the country to give us
                                                                                                New York City found that among
        feedback on the CARE Act program.
                                                                                                people living with HIV/AIDS:
        There are three ways people with HIV can help inform NAPWA’s work on reauthorization:
                                                                                                • those receiving primary med-
        1.Provide written answers to NAPWA’s reauthorization questionnaire. While we do           ical care from a CARE
          not need your name, please be sure to complete the profile so we know what part of      Act-funded provider were 60-
          the country you are from and which services you currently need and/or receive.          70 percent more likely to
                                                                                                  report appropriate medical
        2.Host a local meeting of people with HIV/AIDS to discuss NAPWA’s questionnaire.
                                                                                                  care and 40-50 percent more
          We recommend meetings of no less than five and no more than 12 participants. Try
                                                                                                  likely to report being on key
          to invite both people who currently rely on CARE Act services as well as people
                                                                                                  anti-HIV medications than
          with HIV/AIDS who do not. Allot two hours for the meeting, to allow for a 90-
                                                                                                  those who received their pri-
          minute discussion. Ideal meetings will have a facilitator and note-taker to capture     mary medical care from a
          issues raised. There are no right or wrong answers to the questions so please pro-      provider not covered by the
          vide NAPWA with everyone’s input. Be sure to complete a profile for each individual     CARE Act;
          so we know who was represented. Return your notes to us in any form you like.
                                                                                                • those receiving case manage-
        3.Participate in a local NAPWA discussion group on CARE Act reauthorization               ment and/or client advocacy
          as described above. NAPWA is requesting that all questionnaires, meeting notes          from a CARE Act-funded
          and profiles be returned no later than March 25, 2005 so that we may draw on            provider were 80-90 percent
          your feedback as we prepare a policy position statement on reauthorization.             more likely to report appropri-
        Inserted in this issue of The Circle you will find the questionnaire, which can be        ate medical care and 70
        distributed to people living with HIV for them to complete and return to NAPWA            percent more likely to be on
        and a participant profile, which should be distributed along with the questionnaire.      antiretroviral therapy than
        The profile should also be used with focus group participants, and if you decide to       those who received case man-
        hold such a group, contact Paul Feldman at the email or phone number below to             agement and/or client
                                                                                                  advocacy from a provider not
        receive a facilitator’s guide for conducting focus groups, suggested flyer text to
                                                                                                  funded by the CARE Act; and
        promote the focus group and a brief fact sheet on the CARE Act.
                                                                                                • those who received primary
        If you have any other questions, please contact Paul Feldman by emailing pfeld-
                                                                                                  medical care from a non-CARE or calling 202.464.5652.
                                                                                                  Act-funded provider were half
        Many thanks for your valuable assistance.                                                 as likely as clients of CARE
                                                                                                  Act providers to report care
                                                                                                  that met minimum HIV prac-
                Terje Anderson,                                                                   tice guidelines.
                Executive Director                                                              Source: Abramson, D., et al.,
                                                                                                Assessing the Impact of the Ryan
                                                                                                White CARE Act on Health Outcomes
                                                                                                in New York City: Executive
                                                                                                Summary. 2001.

                                                                                     ALL TRAINED UP AND
                                                                                     NOWHERE TO GO?

N                                                                                    T
       ow, with community planning activities more important than ever, your                here are many chances to use
       local HIV Care Network is the place to be… to be heard, to be seen, to be            your LTI experience to assist our
       involved, to be a leader! Below is an updated list of the networks, their            communities in planning, strate-
                                                                                     gizing and priority setting for services
coordinators and basic contact information. Give them a call and ask when their
                                                                                     and interventions for PWHA. Every
next PWA Advisory Committee meeting is, and/or how you can help.                     region of the state has a Ryan White
                                                                                     Title II HIV Care Network (see list on
                                                                                     p.5), and several regions are also Ryan
Albany Region HIV Care Network           Lower Hudson Region HIV Care
                                                                                     White Title I designated EMAs, with
JILL FARNHAM                             Network
                                                                                     their own Planning Councils and PWHA
Tel: 518-434-9194, ext. 116              KELLI EVERETT                               Advisory Groups. If prevention is your
Web:                Tel: 914-428-2114, ext. 230                 passion, check out the city or state
Email:               Email:                       Prevention Planning Groups.
Bedford Stuyvesant/Crown Heights                                                     In other words, there are lots of opportu-
                                         Mid-Hudson Region HIV Care Network
HIV Care Network
                                ANITA WYATT
                                                                                     nities for our involvement in different
EVE AMMONS-JOHNSON, COORDINATOR                                                      kinds of groups all around New York State.
Tel: 718-622-8184, ext 101      Tel: 845-563-8058
                                                                                     All of these groups depend on our contri-
Email:                                                                butions and expertise as PWHA, and some
Binghamton Tri-County Region                                                         are actively recruiting members right now!
HIV Care Network                Nassau Suffolk Region HIV Care Network               Please directly contact any of the groups
SANDRA KOSTY                             DEBRA ROSS                                  below for more information or for sched-
Tel: 607-778-3066                        Tel: 631-940-3700, ext.6480                 ules of their open public meetings.
Email:            Email:
Web:                                                              DUTCHESS COUNTY HIV SERVICES
                                         Queens HIV Care Network                     PLANNING COUNCIL
Bronx HIV Care Network                                                               Call: (845) 452-8805
                                         MARITZA VILLACIS
SOCRATES CABA                                                                        Contact: Amy Wen
                                         Tel: 718-389-5100, ext. 188
Tel: 718-231-3598
                                                                                     NASSAU/SUFFOLK COUNTY HIV
Email:              Rochester Region HIV Care Network           PLANNING COUNCIL
Buffalo Region HIV Care Network          LYNN VARRICCHIO                             United Way of Long Island
                                         Tel: 585-461-3520, ext. 106                 Call: (631) 940-3716
                                         Email:                       Contact: Myra Alston
Tel: 716-882-7840
Email:                                                               NEW YORK CITY HIV HEALTH AND
Web:                 Staten Island HIV Care Network              HUMAN SERVICES PLANNING COUNCIL
                                         REBECCA ORTIZ                               Call: (212) 442-3929
Central Harlem HIV Care Network                                                      Staff Liaison: Stephen Bailous
                                         Tel: 718-448-8789
JUDITH BUTLER MCPHIEZ                    Email:    
Tel: 212-926-8000, ext. 15               Website:                                    TRI-COUNTY RYAN WHITE TITLE I
East Harlem HIV Care Network      PLANNING COUNCIL
                                                                                     Westchester County Department of Health
JOSE MARTIN GARCIA ORDUNA                Syracuse Region HIV Care Network
                                                                                     (also includes Rockland & Putnam Counties)
Tel: 212-828-6143
                                         STEVE WALDRON, Ph.D.                        Call: (914) 637-4752 or 2453
Website:         Tel: 315-472-8099, ext. 105
                                                                                     NEW YORK STATE HIV PREVENTION
                                                                                     PLANNING GROUP (PPG)
East New York Brownsville HIV
                                         Williamsburg/Greenpoint/Bushwick            General Number: (518) 473-8484
Care Network
                                         HIV Care Network                            Staff Liaison: Wendy Shotsky
Tel: 718-907-3726, ext. 3725             RICHARD FERREIRA                            NEW YORK CITY DOH HIV PREVENTION
Email:                   Tel: 718-455-6010, ext. 138                 PLANNING GROUP (PPG)
                                         Email:             Call: (212) 788-4180
                                                                                     Staff Liaison: Yevgeniy Breger

leading lines

       SURVIVING & THRIVING                       of other issues. At this point it’s too    suffering caused by HIV/AIDS,” is in
       (continued from front)                     soon to tell exactly what will be in       the process of gathering input from
       we offer an Advanced Topic training        play, which makes it even more             PWHA all over the country to help
       that explains the CARE Act and our         important that we as consumers get         NAPWA craft messages to Congress
       opportunities to help shape how those      and stay informed, and that we let         that “accurately reflect [our] needs
       funds are spent in New York State          our representatives know what works        and concerns.” You’ll notice the
       (Introduction to Community Planning).      or doesn’t work from a consumer per-       insert in this issue is not our usual
                                                  spective. (If you’re not sure who          calendar of LTI training dates—that
       Those opportunities are another
                                                  represents you in Congress, www.con-       will be arriving in our next issue in
       important and unique feature of the
                                         is an excellent information      early April—but is rather a survey
       CARE Act; the legislation requires that    resource for all things governmental.)
       PWHA have input into the decisions                                                    NAPWA is using to collect our feed-
       about what services are needed and,        This issue of The Circle spotlights some   back on CARE Act issues and concerns.
       in some cases (Title I), that we partic-   of the work being done by three of         Please take a few moments to com-
       ipate in setting priorities and deciding   the national groups working to pro-        plete the survey and the anonymous
       how resources should be allocated to       tect and strengthen the CARE Act: The      profile form on the back and return
       the various categories of service the      CAEAR Coalition and AIDS Action (see       them to NAPWA so that the voices of
       Act supports. This year, as many of        descriptions of these organizations on     New Yorkers living with HIV/AIDS are
       you already know, the CARE Act will        page 5), and the National Association      sure to be well represented.
       be reauthorized. The decisions made        of People With AIDS (NAPWA). The
                                                                                             In our next issue, we’ll continue looking
       this year will have a profound impact      first two recently released their joint
                                                                                             at the reauthorization process. In the
       on all of us living with HIV/AIDS in       recommendations for reauthorization,
                                                                                             meanwhile, you can stay abreast of
       New York State and around the coun-        which you can access online—along
                                                                                             events by signing up to receive “action
       try, and we need to be aware of what       with related materials—at
                                         and       alerts” from any of the organizations
       the issues are and make sure our voic-
                                                  Here we reprint their analysis of the      mentioned above (NAPWA’s web site is
       es are heard in this difficult and
                                                  importance of the CARE Act, entitled Also, take a look at
       potentially contentious process.
                                                  “Strengthening the Circle of Care: The     some of the information resources being
       As the AIDS Foundation of Chicago          Case for Ryan White CARE Act               offered on the web: AIDS Foundation
       says on its website, “Members of           Reauthorization 2005,” which includes      of Chicago’s CARE Act Action Center
       Congress will determine the future of      an overview of the HIV/AIDS epidemic       (
       the Ryan White CARE Act in 2005            in the United States.                      care_act.php) and the CAEAR Coalition’s
       when they draft and deliberate CARE                                                   Reauthorization Action Center (http://
       Act reauthorization legislation,” a        NAPWA, the national organization
       reminder that reauthorization is not       that “advocates on behalf of all peo-
                                                                                             both good places to start.
       simply a “yea or nay” question (no         ple living with HIV and AIDS in order
       one believes it won’t be reauthorized),    to end the pandemic and the human          See you in training!
       but is, in fact, a process that allows
       lawmakers to remove, add or alter pol-
       icy and program elements of the Act.
       Community advocacy groups are                                   WE DON’T WANT TO LOSE YOU!
       preparing for whatever may end up on           We want to be able to send you the most up-to-date information
       the table, from changes to the AIDS            about LTI programs and related HIV/AIDS events. Please call us if
       Drug Assistance Program (ADAP),                your contact information has recently changed, and remember to let
       which remains severely under-funded,           us know if you move or change your phone number in the future!
       to possible limits on support services         866/PWA-LEAD (866/792-5323) x231;
       that would narrow the CARE Act's
       focus to medical activities, to a host