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HIV/AIDS

  • General Information
    • 1-800-541-AIDS
    • 1-800-233-7432 Spanish
  • AIDS Drug Assistance Program (ADAP)
    • 1-800-542-2437
  • HIV Confidentiality Hotline
    • 1-800-962-5065

CEI Program & Services for clinicians

  • (315) 477-8479 or visit www.ceitraining.org
    • Post-Exposure Prophylaxis Hotline (PEP Line)
      • 1-866-637-2342
  • HIV/Hepatitis C
    • 1-866-637-2342
  • STDs
    • 1-866-637-2342

Health Care Services

HIV Uninsured Care Programs (ADAP, ADAP PLUS, HIV Home Care, ADAP Plus Insurance Continuation)

The New York State Department of Health AIDS Institute has established four programs for HIV Uninsured Care -- ADAP, ADAP Plus, ADAP Plus Insurance Continuation, and the HIV Home Care Program.  The mission of these programs is to provide access to medical services and medications for all New York State residents with HIV/AIDS.  The programs' dual goals are to empower individuals to seek, access, and receive medical care and prescription drugs without cost and to supply a stable and timely funding stream to health care providers, enabling them to use the revenues to develop program capacity to meet the needs of the uninsured HIV population.

The AIDS Drug Assistance Program (ADAP) began in 1987 as part of a national initiative to provide free HIV/AIDS drugs to low-income individuals not covered by Medicaid or without adequate third­-party insurance.  In November 1991, the HIV Home Care Program, modeled after ADAP, was implemented through a federal demonstration grant.  The ADAP Plus primary care initiative was developed with cooperative funding through a unique partnership between New York City and New York State and was implemented statewide in October 1992.  The ADAP Plus Insurance Continuation Program (APIC) began July 1, 2000.  All four programs are integrated, centrally administered, use a unified application form, and coordinate outreach activities.

The programs serve HIV-infected New York State residents who are uninsured or under-insured and meet established residency, financial, and medical criteria.  The programs serve as a transition to Medicaid by providing interim assistance to individuals eligible for but not yet enrolled in Medicaid, or assistance in meeting spend-down requirements.  Individuals with third-party insurance who cannot meet the deductibles or co-payments, or whose policies have waiting periods, are eligible to enroll in the programs.  Adolescents who do not have access to the financial or insurance resources of their parents/guardians are also eligible.
The programs' service benefit package has been restructured several times based on available funding.  As of August 2011, the ADAP formulary consists of more than 480 drugs, including:  antiretrovirals, antineoplastics, prophylaxis and treatments for opportunistic infections, and medications for related conditions.  ADAP Plus covers a full range of HIV primary care services, provided on an outpatient ambulatory basis, including:  annual comprehensive medical evaluation, clinical HIV disease monitoring, treatment of both HIV-related and non-HIV related illness, mental health and dental services, ambulatory surgery, laboratory services, and nutritional counseling and supplements.  Services covered through the Home Care Program include:  skilled nursing, personal care, homemaker and home health aide services, adult day health care, intravenous administration and supplies, and durable medical equipment.  APIC pays the premiums of individuals who lose their employment and are eligible to continue their insurance, or working individuals who cannot afford their insurance premiums.  Coverage of drugs and services is revised based on available funding and the changing clinical profile of the epidemic.

The HIV Uninsured Care Programs use the AIDS Institute's network of programs and providers and those of other New York State agencies as a comprehensive referral system and distribution network for applications and promotional materials.  The Programs provide Federal Minority AIDS Initiative funding to ten community based organizations throughout New York State to support outreach and educational activities to increase minority participation in care and ADAP.  In cooperation with state, federal, and local corrections authorities, program applications and information are provided to HIV-positive inmates nearing release from correctional facilities.  The programs are coordinated with Medicaid to assure non-duplication of coverage, continuity of care and an easy transition to Medicaid when participants meet Medicaid eligibility criteria.  An advisory workgroup provides input, guidance, and recommendations to the programs from a wide variety of perspectives to recommend coverage elements and to ensure integration with other HIV services.  The workgroup is comprised of persons living with HIV/AIDS, representatives of Part A Planning Councils, local and state government officials, health care providers, agencies, associations, and clinicians.

The programs serve all populations affected by AIDS in New York State, with participant demographics changing over the years to reflect changes in the epidemic.
New York State's ADAP/ADAP Plus has the most comprehensive drug and service coverage of any state in the country.  Utilization of combination antiretroviral therapy, drugs to treat side effects and toxicity, and ambulatory care services has consistently increased over time.

Contact:

Christine A. Rivera
Director, Office of HIV Uninsured Care Programs
HIV Health Care and Policy
518-459-1641 or 1-800-542-2437 (In New York State Only)
car05@health.state.ny.us

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AIDS Nursing Facilities

The AIDS Nursing Facilities Initiative began in 1988 to provide appropriate nursing home care for people with HIV/AIDS.  The Department of Health issued regulations for the development of AIDS nursing facilities and an enhanced Medicaid reimbursement structure that allows for increases in nursing time, substance abuse counseling, AIDS medications, and medical care.

Nursing facilities providing services to residents with AIDS must ensure special services are provided including: medical services by a physician who has experience in the care and clinical management of persons with AIDS; sub-specialty physician services; nursing services supervised by a registered professional nurse with experience in the care and management of persons with AIDS; substance abuse services; HIV risk/harm reduction education; comprehensive case management; and pastoral care.

The AIDS Institute has completed the development of new, discrete AIDS nursing facilities in the greater New York City metropolitan area.  As a result of this initiative, there are 13 facilities with a total of 1079 beds.  The majority of these facilities were new construction projects, publicly financed through the sale of State bonds.  New alternatives in long term care, including AIDS Day Health Care Programs, increased access to home care and supportive housing programs, as well as improved health as a result of the use of combination therapies, have reduced the need for AIDS nursing home beds.

An additional 12 facilities across New York State are approved for AIDS scatter beds.  These facilities have the ability to admit up to ten AIDS residents at any point in time. The AIDS Institute will continue to monitor the need for AIDS nursing home beds, and will encourage the development of AIDS Scatter beds in nursing facilities in Upstate New York as necessary to ensure sufficient access to nursing home care for persons with HIV/AIDS.   

Contact:

Joe Losowski
Director, Chronic Care Section
Office of Medicaid Policy and Programs
(518) 474-8162
jml03@health.state.ny.us

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AIDS Home Care Programs

AIDS Home Care Programs (AHCPs) are required to meet the federal conditions of participation for Certified Home Health Agencies (CHHAs) and Long Term Home Health Care Programs (LTHHCPs). The primary goal of AHCPs is to prevent the premature institutionalization of individuals through the use of comprehensive home care services and case management.  The programs offer a variety of home and community based medical and non-medical support services to improve or maintain the health and daily functions of individuals who would otherwise require nursing home care.

General eligibility requirements for AHCPs include:

  • A diagnosis of HIV infection or AIDS;
  • Eligibility for Medicaid so that Medicaid will pay for the services;
  • Requirement of nursing home care as determined by a medical asssessment;
  • Wish to remain in the community with doctor's agreement that care can be safely provided in the home; and
  • Ability to be cared for in the community at less cost to Medicaid than in a nursing home in your county.

Providers are responsible for case management/coordination services consistent with a comprehensive assessment, which at a minimum, addresses the medical, social, mental health, and environmental needs of the client.  An AHCP may be provided by a LTHHCP or a Designated AIDS Center specifically authorized to provide an AHCP.

In general, AIDS home care programs are responsible for arranging and/or providing, either directly or through contract arrangements, one or more of the following: case management; nursing services; physical, occupational and speech therapy services; medical supplies and equipment; homemaking/housekeeping; home health aide services; personal care services; nutritional counseling and education; and medical social services.  In addition, other optional waiver services such as community transitional services, environmental modification, home maintenance, home and community support services, assistive technology (including personal emergency response system), respite care, moving assistance, and home delivered and congregate meals may also be available.  

Because of the special needs of persons with HIV/AIDS, AHCPs must establish and implement procedures to coordinate care with other facilities or agencies conducting clinical trials of HIV therapies; arrange for substance abuse treatment services; and assure patient access to such services as pastoral care, mental health, dental, and enhanced physician services.

To date, there are 28 AHCPs and special needs CHHAs providing care in New York State.

Contact:

Joe Losowski
Director, Chronic Care Section
Office of Medicaid Policy and Programs
(518) 474-8162
jml03@health.state.ny.us

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AIDS Adult Day Health Care Programs

AIDS Adult Day Health Care Programs (ADHPs) were originally designed for a frail population that required a greater range of comprehensive health care services than could be provided in any single ambulatory setting, but did not require the level of services provided in a hospital or a skilled nursing facility.  While the original intent of the program model -- to assist individuals with AIDS and HIV disease live more independently in the community and prolong or eliminate the need for residential health care services -- continues to be a major objective, ADHCPs have evolved over the years to meet the emerging needs of the population. Treatment advances have, in many cases, transformed HIV disease from a terminal illness to a chronic condition. As a result, the HIV infected population is living longer, and along with this trend has seen an increase in concomitant chronic medical conditions such as cardiovascular disease, hypertension, hepatitis and diabetes.
In order to achieve optimal results from the treatment advances that have occurred since the start of the HIV epidemic, it is critically important for individuals to be adherent to their treatment regimes. Clearly, medication adherence can be a major challenge associated with any disease. For individuals infected with HIV, adherence is often further compromised by the commonly occurring co-morbidities of substance use, mental illness, and other chronic conditions. This comprehensive care model has evolved to address the challenges and complexity of managing multiple comorbidities.

The intent of the ADHCPs is to complement or enhance the existing continuum of medical services through on-going coordination with primary care providers and other service providers.  ADHCPs are designed to provide a comprehensive and integrated model of service delivery in a cost-effective manner by avoiding duplication of services and minimizing the need for patients to receive additional off-site services.

AIDS Adult Day Health Care Programs provide a comprehensive range of services in a community-based, non-institutional setting.  General medical care including treatment adherence support, nursing care, rehabilitative services, nutritional services, case management, HIV risk reduction, substance abuse, and mental health services are among the services provided.  Health maintenance/wellness activities such as supervised exercise and structured socialization are adjunct components of the program model, but cannot be the sole reason for admission/continued stay in the program.

ADHCP services are primarily located in the Greater New York Metropolitan area.  Services are also located in Westchester County and in Monroe County in Upstate New York.

Currently, there are 15 licensed programs with a capacity to serve 987 clients per day.

Contact:

Joe Losowski
Director, Chronic Care Section
Office of Medicaid Policy and Programs
(518) 474-8162
jml03@health.state.ny.us

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Community-Based HIV Prevention and Primary Care Services

The Community HIV Prevention and Primary Care Initiative was established in 1989 to meet the growing need for community-based HIV services.  AIDS Institute grants provided funding to local health departments, hospitals and community health centers willing to develop or expand on-site HIV prevention and primary care services.  Initially, seventeen facilities received grants. With the addition of federal funding and a State appropriation targeted to rural counties, the initiative was expanded.  

In 2009, a competitive resolicitation was issued.  The resolicitation was an opportunity to increase the availability of comprehensive and quality HIV prevention and primary care services in community-based health care settings by incorporating the advances of the past decade into program models and standards.  The focus of grant funded services reflects current knowledge, best practices, advances in testing technologies, and policy directives.  The initiative is responsive to the rapidly changing health care environment. Initiative advances include:  evidence/behavioral-based prevention interventions, routine integrated HIV testing and linkage to care, new testing technologies, advanced harm reduction interventions, and best practices in the treatment of HIV/AIDS. As a result of the resolicitation process, the Primary Care Initiative currently funds 30 providers throughout New York State.

The goals of the initiative are to educate those at risk for HIV infection, promote the availability of routine HIV testing, facilitate early access to coordinated, comprehensive and continuous care, and develop provider capacity to deliver on-site quality HIV primary care services.  Facilities are funded to provide a wide range of prevention, support, and care services including:  routine and integrated HIV testing as part of primary care; counseling for high risk individuals; partner counseling and referral services; HIV primary care; medical case management; prevention with positives (inclusive of the Centers for Disease Control and Prevention Diffusion of Effective Behavioral Interventions (DEBIs) and Effective Behavioral Interventions (EBIs)); and, linkage to services not available on-site.  Quality improvement principles are woven into all aspects of service delivery for funded providers. Key features of the initiative are:  expanded availability and integration of HIV testing as a routine part of care, early access to care, access and engagement at multiple points of care, maintenance in care, referral follow-up, and on-site care coordination by multidisciplinary service teams.  In addition, all programs funded through this initiative are required to develop regular mechanisms to integrate consumer feedback into the implementation and evaluation of program activities.

Linkages with other service providers offering services not provided on-site are important to ensuring access to the full continuum of HIV related care services.  Grant-funded programs are required to develop referral and linkage agreements with other service providers, including:  Designated AIDS Centers and other hospitals; community-based service organizations; drug treatment programs; county tuberculosis control programs; women's service agencies; parole offices; anonymous counseling and testing programs; and agencies providing services to adolescents.

From June 2010 to July 2011, initiative funded programs tested over 38,000 patients through integrated HIV testing, identifying 146 infected persons who had not previously known their status.  Of those individuals testing positive, almost 53% were Black/African American, 25% were Hispanic, and 69% were men.  Over 42% were men who had sex with men and another 41% reported their risk as heterosexual sex.  As of August 2011, at least 121 (83%) of these newly identified HIV positive individuals were successfully linked to HIV medical care.  Providers continue to work to ensure the remaining individuals become engaged in care.  All HIV positive individuals are referred to Partner Services and HIV prevention counseling.  As of September 2011, at least 48% have been confirmed to have been in contact with Partner Services.

From June 2010 to July 2011, approximately 4,900 HIV-positive patients received medical case management and HIV primary medical services through providers funded by this initiative.  The initiative continues to succeed in reaching the target populations:  Black/African Americans and Hispanics accounted for 74% of primary care patients; 36% were women; ~10% were injection drug users; and 29% were men who have sex with men.

Contact:

Felicia Schady
Director, Division of HIV and Hepatitis Health Care
(518) 473-8427
ffs01@health.state.ny.us

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Designated AIDS Centers

Designated AIDS Centers (DACs) are State-certified, hospital-based programs that serve as the hubs for a continuum of hospital and community-based care for persons with HIV infection and AIDS.  AIDS Centers provide state-of-the-art, multi-disciplinary inpatient and outpatient care coordinated through hospital-based case management.  DACs with pediatric and obstetrical departments also provide specialized HIV care to infants, children, and pregnant women.

The AIDS Center program was developed and remains a patient-centered program model that can evolve with the needs of the patient in the changing health care environment.  AIDS Centers provide a primary care home for the person with HIV.  Patient outcomes improve when care is seamless, coordinated by a care manager utilizing multi-agency, multi-disciplinary health care teams.

HIV-specific care standards developed for DACs are intended to ensure uniformly high quality care for HIV patients.  AIDS Centers usually have a dedicated team and are required to provide or arrange for inpatient care; coordinated outpatient services including a broad array of subspecialty services; long-term care, as necessary; and counseling and testing services.  AIDS Centers must make arrangements for patients' personal or home care as required, and arrange for patients to participate in clinical trials.  AIDS Centers must enhance coordination with their community-based partners to identify patients at risk, help patients access and remain in care, and understand and adhere to their complicated regimens.

The quality of care is monitored and evaluated by the HIV Quality of Care Program described in a separate section of this document.  Each AIDS Center is required to have an active quality program including a broadly inclusive quality improvement committee as well as a consumer advisory group and other mechanisms to involve consumers in improving services for PLWHA.

With the Statewide implementation of Medicaid managed care plans for persons with HIV/AIDS over the last few years, AIDS Centers continue to maintain state-of-­the-art HIV treatment and serve geographic areas with the highest HIV/AIDS prevalence.

Currently, there are thirty-nine AIDS Centers statewide treating approximately 38,000 unique persons with HIV/AIDS as outpatients and inpatients.

Contact:

Deborah Dewey, MUP
Statewide Coordinator, AIDS Center Program
Office of Medicaid Policy and Programs
(518) 486-1383
dmd16@health.state.ny.us

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HIV Special Needs Plans (SNPs) / Managed Care

HIV Special Needs Plans (SNPs), as defined in the New York State Medicaid Managed Care Act of 1996, are intended to provide an alternate source of capitated managed care to Medicaid-eligible persons with HIV infection.
Specialized managed care plans to address the health and medical needs of persons with HIV/AIDS first began to be explored by New York State in 1994 with the award of a Special Projects of National Significance (SPNS) grant from the federal Health Resources and Services Administration. Using this grant as a cornerstone, the AIDS Institute initiated formal HIV SNP development. Activities included awarding $2 million in grant funds for planning purposes; initiating a research study designed to evaluate the health care experiences of persons with HIV infection as they transition from a Medicaid fee-for-service program to a capitated managed care environment (the "Client Cohort); and passage of legislative language authorizing the creation and licensure of HIV SNPs. These activities culminated in federal approval of the Department of Health’s application to implement SNPs.

HIV SNPs, fully operational since 2003, provide an alternative source of care to Medicaid­ eligible persons in New York City with HIV/AIDS. In New York City approximately 25,000 HIV+ Medicaid individuals must choose either an HIV SNP or a mainstream managed care plan to receive their Medicaid benefits.   HIV SNP networks are broadly composed, encompassing the full continuum of HIV services currently available in New York State. Inclusion of health and human service providers with experience in the provision of HIV services enables SNPs to meet the complex medical and psychosocial needs of enrollees, either through direct service provision or by referral. Clinical care provided by SNPs is in accordance with AIDS Institute established standards for HIV care and assessed through continuous quality improvement techniques. Three SNPs, selected through a competitive process to proceed toward SNP certification, are currently licensed and enrolling eligible individuals throughout New York City. In January, 2012 total SNP enrollment was 16,700.

Because most Medicaid beneficiaries in NYS must enroll in a Medicaid managed care plan, the AIDS Institute is working to assure that all Medicaid-eligible persons with HIV infection have appropriate access to health care services delivered in a managed care setting. To assure that services offered by mainstream managed care plans assure access to quality HIV and other covered care, the AIDS Institute participates in the development of programmatic standards for mainstream managed care plans, conducts quality of care reviews, and participates in Article 44 surveys. The AIDS Institute also provides technical assistance to managed care plans regarding prevention activities and establishing coordinated systems of care that are appropriate to the specific health care needs of enrollees with HIV/AIDS.

Contact:

Carol DeLaMarter
Director, AIMS/Managed Care
Office of Medicaid Policy and Programs
(518) 486-1383
cmd13@health.state.ny.us

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HIV Enhanced Fees for Physicians Program

Program Description

The Enhanced Fees for Physicians Program (EFP) was established in 1991 by the New York State Department of Health to give private practice physicians enhanced Medicaid rates for HIV Primary Care Visits. These visits include:

  • HIV Testing
  • HIV Post-test positive counseling
  • HIV monitoring

Physicians who participate in the Enhanced Fees for Physicians Program must:

  • be in private practice and enrolled in the New York State Medicaid Program;
  • have active hospital admitting privileges;
  • be Board certified (preferably in infectious disease, internal medicine, family practice, pediatrics or obstetrics/gynecology);
  • provide 24 hour coverage; and
  • manage patient medical services, including hospital admissions and referrals for specialty care and social services.

Currently there are over 2,374 physicians enrolled in the HIV EFP program.

Contact:

Deborah Dewey, MUP
HIV Reimbursement and Program Administrator
Office of Medicaid Policy and Programs
(518) 486-1383
HIVEFP@health.state.ny.us

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HIV Primary Care Medicaid Program

The HIV Primary Care Medicaid Program (HPCMP) was established in 1989 by the New York State Department of Health to provide enhanced Medicaid rates to Article 28 facilities for HIV primary care and HIV testing visits.

Medicaid reimbursement methodology began a change in December 2008 that ultimately required 85% of the HPCMP providers to adopt new procedure-specific Ambulatory Patient Groups (APGs).  Since the full implementation of APGs, only Federally Qualified Health Centers (FQHC) that have NOT opted into the new APG methodology, continue access to the HPCMP rate structure. FQHCs who meet enrollment criteria can access enhanced reimbursement for HIV testing and HIV treatment.

Enrollment Criteria includes: 

  1. the facility must be a FQHC (Article 28 facility hospital OR diagnostic and treatment center); and
  2. the facility must sign an agreement with the New York State Department of Health to provide comprehensive services and coordination of care for persons with HIV. 
There are currently 43 FQHC facilities accessing HPCMP specific rates

Contact:

Deborah Dewey, MUP
HIV Reimbursement and Program Administrator
Office of Medicaid Policy and Programs
(518) 486-1383
HIVEFP@health.state.ny.us

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HIV Primary Care and Prevention Services for Substance Users

The Substance Abuse Initiative is designed to develop a co-located continuum of comprehensive HIV prevention and primary care services within substance abuse treatment settings throughout New York State.  At its core, the co-located model operates on the principles of integration of HIV services within the drug treatment environment and the seamless transition from testing to care.  Reaching active users not in treatment and responding to their complex needs is also integral work of the initiative.  For those actively using and willing, the program facilitates the transition and entry into addiction services, treatment and toward recovery.

The initiative was originally conceived and developed in 1989 through collaboration between the New York State Department of Health AIDS Institute and the New York State Office of Alcohol and Substance Abuse Services (OASAS) to respond to the companion epidemics of HIV and addiction.  Implemented in phases, the first phase was a comprehensive prevention program in drug treatment facilities to provide outreach, HIV education, counseling and testing, referral, partner notification, and individual and group supportive counseling.  In 1990, co-located HIV primary care was introduced to expand the continuum.  In 2001, the Initiative issued a competitive resolicitation to increase the availability and quality of HIV prevention and primary care services by incorporating the advances of the past decade into programming.  Those advances included:  behavioral-based prevention interventions, harm reduction, new testing technologies, comprehensive risk counseling and services, and new standards and best practices in the treatment of HIV/AIDS.  

Medical Case Management

All grant funds that are part of the Substance Abuse Initiative (SAI) were competitively resolicited during 2009, with new award activities beginning May 1, 2010.  Upon resolicitation, all drug treatment agencies that are part of the initiative had made integrated HIV testing a routine part of the medical screening and care provided by program medical staff.  Grant funds in those settings now support medical case management for HIV positive clients.  These services include:

  • Intensive post-test counseling for newly identified HIV+ clients;
  • Counseling and referrals for partner services;
  • Comprehensive assessment of social needs and, where appropriate, referral to community case management programs;
  • Engagement and retention activities designed to support medical care adherence, including tracking key clinical indicators and assessing health literacy;
  • Clinical care coordination with outside primary and sub-specialty providers;
  • Comprehensive assessment of prevention needs for all HIV positive clients; and
  • Evidence based individual and/or group behavioral interventions. 

Thirteen medical case management contractors, including eleven in New York City and two upstate, have provided services for 4,161 clients through July, 2011. 

Substance Use Learning Network (SULN)

The initiative features a peer-based learning collaborative for grant-funded drug treatment agencies that provide co-located HIV primary care.  The SULN goal is to improve and sustain the quality of HIV services provided to substance users in treatment.  The framework includes identifying performance measures and indicators, activities, data collection and peer learning opportunities to allow sharing of successful strategies and best practices.  The SULN is currently focusing on a project to increase the percentage of HIV-positive patients with an undetectable viral load. 

Comprehensive Risk Counseling and Services (CRCS)

Resolicited grant funds are also supporting comprehensive outreach, information, testing, and referral services for active substance users throughout New York State.  These services include:

  • Enhanced, evidence-based outreach;
  • Assisted referrals for detoxification and drug treatment services;
  • HIV testing using rapid test technology;
  • Assisted referrals to medical care, case management, and partner services for persons testing HIV positive;
  • Hepatitis information and referrals for testing, vaccination, and treatment;
  • Information on sexually transmitted infections and referrals for testing and treatment;
  • Facilitating client access to sterile syringes;
  • Education and skills training for clients, staff, and community members regarding opioid overdose prevention;
  • Follow-up to confirm the outcome of all referrals; and
  • Systems advocacy and transitional counseling to support clients in accessing services.

Through July, 2011, fifteen community based contractors have referred 2,790 clients for essential services, including 1,280 linked with drug treatment programs.  In addition, 3,043 active users have been tested for HIV.   

Contact:

Marc Slifer
Director, Substance Use Section
Bureau of HIV Ambulatory Care Services
Division of HIV and Hepatitis Health Care
(212) 417-4530
mxs06@health.state.ny.us

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Treatment Adherence Initiative

Greater understanding of HIV virology and pathogenesis, the development and use of quantitative HIV RNA testing, and highly active antiretroviral therapy (HAART) provide new opportunities to delay disease progression and improve the quality of life for people living with HIV/AIDS. A key pathway to these outcomes for individuals and communities is support for adherence to antiretroviral treatment and other components of an HIV treatment plan.

The consequences of non-adherence to HAART can seriously affect an individual's personal health and that of the community.  Inconsistent and non-adherence allows viral replication and mutation to continue, leading to the development of drug-resistant strains of virus which can, in turn, compromise an individual's health and future treatment.  Unsuppresesed viral replication can increase the risk of transmission within a community. Adherence to antiretroviral therapy is a critical determinant of the success of clinical therapeutics for HIV infection today.

Achieving adherence to antiretroviral therapy in the practice setting remains challenging.  It requires that the patient and health care provider, in collaboration with the patient's support network, address the multidimensional issues surrounding adherence to the treatment plan.  These issues involve patient characteristics and circumstances, the treatment regimen, the health care delivery system, and the patient-provider relationship.

The AIDS Institute's Office of the Medical Director coordinates a number of activities designed to support and enhance treatment adherence and facilitate the sharing of adherence best practices among providers and consumers.

Fifteen treatment adherence programs are funded to integrate treatment adherence services into the continuum of HIV primary care.  Each program implements strategies to promote adherence to HAART through a client-centered approach.  Members of the health care team work in concert with consumers to develop, implement, and evaluate tools and skills-building activities to increase and sustain adherence to therapy.  One of the fundamental objectives of the Treatment Adherence Initiative is to foster a comprehensive approach to assessing and assisting consumers at risk for non-adherence, and promote consumer and provider collaboration to develop consumer-specific strategies that lead to sustained treatment adherence.

Contact:

Beth Woolston, LMSW
Office of the Medical Director
(518) 473-8815
bew01@health.state.ny.us

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Family-Focused HIV Health Care for Women

New York State has the country’s largest population of women living with HIV/AIDS.  New York City continues to be the epicenter of the HIV epidemic, as 78 percent of women living with HIV/AIDS reside there.  The epidemic has made further inroads into vulnerable populations already marginalized from health care systems, including women of color, immigrant women and females in New York’s prison system.

Women affected by HIV experience poverty, substance use, domestic violence, mental illness and family disruptions. The medical care of women with HIV is further complicated by cultural/gender inequality and family issues that are separate from those seen in their male counterparts. Traditionally, women have the primary responsibility for care of their children. Concerns regarding family and children often take precedence over their own health issues.  In addition to addressing their health care concerns, infected women often face compounding issues such as custody arrangements, daily child care, disclosure, elder care and discrimination.

Engaging and retaining HIV-positive pregnant women and women with dependent children in the health care system requires holistic, family-focused services that recognize the women’s role as primary caregivers and address the multiple needs of their children.  For women with HIV, gynecologic and reproductive health services, including family planning, must be coordinated with adult HIV primary care. The Family-Focused HIV Health Care for Women Initiative is a comprehensive model designed to meet the needs of the HIV-positive women. The initiative seeks improved access to care, a reduction to barriers within the health care system, and overall to improve health outcomes through support and adherence to treatment regimens.  In addition, a paramount outcome of this initiative is to reduce the risk of perinatal HIV transmission.

Family-Focused HIV Health Care for Women is an integrated model of service that coordinates HIV, primary care, women’s health services, and pediatric care for infants exposed to HIV. Multicultural, multidisciplinary teams combine HIV specialty care, mental health counseling, prevention with positives, medical case management and other HIV-related support services to address the complex medical and social issues faced by women and HIV-affected families.  The Family-Focused HIV Health Care for Women Initiative includes active involvement of clinicians in the development and evaluation of the program model.  There is ongoing communication among all team members and community partners to ensure coordination of services and resources.  All efforts contribute to the goal of timely interventions - aggressive engagement and re-engagement, support for addressing family issues, optimal early treatment and continuous care.

As of 2011, a network of seven health care agencies, focused primarily in New York City, provide funded services.  Pregnant women diagnosed with HIV and women living with HIV who have dependent children in their household are eligible for program services.

Contact:

Pat Doyle
Initiative Director, Family-Focused HIV Health Care for Women
Bureau of HIV Ambulatory Care Services
Division of HIV and Hepatitis Health Care
(518) 486-5773
pad03@health.state.ny.us

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Adolescent/Young Adult HIV Specialized Care Centers

As of December 2009, the total number of young people ages 13 to 24 years living with HIV/AIDS in New York State (NYS) was 5,105, of which 743 were newly diagnosed with HIV in 2009. 

A significant number of adolescents and young adults who were infected perinatally are served by the Specialized Care Centers (SCCs).   Many of these adolescents and young adults have significant developmental, mental health, risk reduction and self-management needs.  With a lifetime of medical monitoring, treatment regimens and potentially life threatening illnesses, this population is also confronted with the physical, cognitive, psychosocial and emotional challenges of adolescence. 

SCCs provide integrated, comprehensive health care and support services to address the needs of adolescents and young adults who have HIV.  Adolescents and young adults at risk for contracting HIV may also receive limited services.  The SCCs are also responsible for developing linkage agreements to ensure the provision of a continuum of services needed by youth.  SCCs provide risk assessment and risk reduction services for:  HIV, sexually transmitted diseases (STDs), hepatitis, other chronic diseases, and substance use (e.g., drugs, alcohol and tobacco).  HIV counseling and testing, partner services, HIV primary care, reproductive health care and health promotion counseling are offered.  Also provided are domestic violence/trauma screening with referral to services as needed, mental health services, medical case management, crisis intervention, transition planning services, peer support groups, skills building/educational programs, and concrete supportive services.  Services are designed to be non-judgmental and adolescent/young adult focused.  SCCs provide innovative and tailored strategies that promote adherence with HIV medications and retention in care.

While SCCs primarily serve adolescents and young adults living with HIV infection, these programs may  provide low-threshold clinical services (up to 6 months) to high-risk adolescents/young adults who are referred to the program either through inreach or outreach efforts.  Low-threshold clinical services include: HIV counseling/testing and risk reduction services; care for acute illness with immediate access to pharmaceuticals for uninsured youth; family planning and reproductive health care; STD screening and treatment; and screening and referral for treatment of tuberculosis and hepatitis A, B and C.  High-risk populations include young people of color, disenfranchised youth and those living in poverty.   Those at highest risk include young men who have sex with men; lesbian, bisexual, questioning or transgender youth; youth involved in “street economy;” substance users; homeless; adolescents/young adults who have experienced physical, mental, and/or sexual abuse; gang-involved youth; and/or those with a history with the criminal justice system. 

Intended outcomes of the SCCs are:

  • Improved engagement of  adolescents/young adults into systems of HIV prevention, health care, and supportive services;
  • Increased earlier identification of HIV, with provision of prompt support and linkage to care;
  • Improved disclosure of HIV status and improved partner notification;
  • Reduced transmission of HIV and STDs, as well as unintended pregnancies;
  • Improved provision of culturally relevant and client-focused services;
  • Strengthened client self-management skills, including health promotion skills (e.g., nutrition, physical activity, tobacco cessation) and eventual, successful transition to adult care;
  • Improved client ability to navigate complex health care and supportive services systems;
  • Enhanced retention in HIV care;
  • Improved adherence to treatment to stabilize or improve health status and suppress viral loads;
  • Improved care coordination between primary, HIV, obstetrics and gynecology (OB/GYN), pediatric/adolescent and other specialty care; and
  • Reduced disparities in health outcomes for communities of color.

Statewide, there are fourteen SCCs funded. 

Contact:

Beth Bonacci-Yurchak
Director, Family & Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV and Hepatitis Health Care
(518) 473-3676
bby01@health.state.ny.us

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Adolescent and Young Adult Youth Access Programs

As of December 2009, the total number of young people ages 13 to 24 years living with HIV/AIDS in New York State (NYS) was 5,105, of which 743 were newly diagnosed with HIV in 2009.

Sexually transmitted disease (STD) rates in the adolescent/young adult population are extremely high. One in four young people will have an STD during adolescence, and one in two sexually active young adults will have an STD by age 25, according to the Centers for Disease Control and Prevention. New York State’s teen pregnancy rate in 2008 for 15 to 19 year olds was 57.6 pregnancies per 1,000.

To compound the issues above, many youth experiment with drugs and alcohol which often leads to sexual risk-taking. For high-risk youth, the frequency and intensity of risk-taking behavior contribute to an increased potential for HIV, STDs and unintended pregnancy, necessitating integrated risk reduction efforts. Contributing factors related to high risk-taking behaviors may include multiple life stressors, such as poverty, chaotic/violent home situations, and/or physical or sexual abuse.

Youth, in general, are not high users of health care and frequently avoid health care settings that are unfamiliar or not youth-friendly. The stigma of HIV, possibly combined with mental illness, substance use, poverty, violence and other forms of trauma, may present further barriers to seeking help.

These statistics and trends emphasize the need to reach high-risk youth, identify those who are HIV-positive earlier in their disease course and connect them to care, and empower HIV-negative youth to remain HIV-negative.

The major goal of the Youth Access Program (YAP) is to reach HIV-positive adolescents/young adults whose status is unknown or who are not in care and connect them promptly to HIV/AIDS care.  Another important focus of this model is to connect high-risk youth to ongoing primary health care and to needed psychosocial and supportive services (e.g., child abuse/domestic violence, mental health, substance use treatment, etc.). 

YAPs provide low-threshold clinical services to high-risk youth (aged 13-24 years) in targeted and accessible community-based settings to meet their immediate health care and social service needs. In many cases, these needs must be met before or concurrent with addressing issues related to HIV testing and treatment.  Low threshold clinical services include: HIV counseling and testing and  risk reduction services; care for acute illness with immediate access to pharmaceuticals for uninsured youth; pregnancy testing, family planning and reproductive health care; STD screening and treatment; and screening and referral for treatment for tuberculosis and hepatitis A, B, and C.  A psychosocial assessment should be done to identify the unique needs of each adolescent/young adult and to offer appropriate services and referrals as needed.

Outreach is designed to reach the highest risk adolescents/young adults who may be socially isolated and marginalized. A community approach, which builds on partnerships with health providers, youth-serving organizations, the social networks of youth, and other community resources, facilitates access to the services that high-risk adolescents/young adults need at the point of entry into care.  It is imperative that YAP services be available at times when youth can access them, particularly evenings and/or weekend hours and at consistent community locations on a regular schedule (i.e., minimally weekly or bi-weekly). Over time, funded programs may need to adjust service locations as the community and population needs change.

Four Youth Access Programs were established in New York City and the Lower Hudson Valley in 2011. 

Contact:

Beth Bonacci-Yurchak
Director, Family & Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV and Hepatitis Health Care
(518) 473-3676
bby01@health.state.ny.us

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Legal and Supportive Services for Individuals and Families Living with HIV

New York State (NYS) continues to be the epicenter of the HIV/AIDS epidemic, leading the nation in cumulative AIDS cases and persons living with HIV/AIDS. As of December 31, 2009, there were 128,119 reported New Yorkers living with HIV and AIDS. Of these, 78,768 people were living with AIDS and 49,351 were living with HIV infection. In 2009, African Americans/Blacks represented 43.2% of the State’s population living with HIV/AIDS, Latinos represented 31.2%, and females represented 30 percent.

There have been dramatic changes in the HIV epidemic affecting New York’s women, children and their families. While women represent an increasing percentage of total HIV/AIDS cases in NYS, it is important to note that there has been a significant decline in the number of HIV-positive women giving birth, from 1,898 in 1990 to 536 in 2009. This represents a 72% decline in the number of HIV-positive women delivering in NYS.

The majority of families affected by HIV are single-parent households with women as both the head of the household and primary caregiver for dependent children.  Families affected by HIV frequently have histories of poverty, substance use, trauma/domestic violence and/or mental illness. These factors often result in chaotic lifestyles that cause disruptions in living arrangements and instability in personal relationships.

In addition to immediate health concerns, families affected by HIV frequently face issues such as unemployment, unstable housing and barriers to accessing entitlements/public benefits. Interruptions in benefits and social entitlements often result in missed medical appointments, lapses in medication regimens, disrupted treatment adherence and ultimately poor health outcomes. The impact of discrimination and/or barriers to accessing benefits and social entitlements may have serious repercussions to the health and welfare of HIV-affected families.

The issues that affect HIV-positive individuals and HIV-positive families with children are rooted in the same causal factors; however, the latter have the additional complexity of custodial care and permanency planning for dependent children. Many parents lack the resources or need additional assistance, both legal and supportive, to move toward making a care and custody plan legally binding.   Furthermore, new caregivers, often grandparents or other extended family members, face many challenges in assuming parental responsibility for HIV-affected dependent children.

Future care and custody planning remains a difficult task for these parents, as it is for all parents. They often fear that care and custody planning will be a painful discussion for themselves, their children and their identified caregiver. Many parents do not complete all the necessary steps to make their informal care and custody plans legally binding documents to be used if they are unable to care for themselves or their dependent children. Those who have made a plan may need to make modifications in response to the changing developmental needs of their growing children and the aging of identified caregivers/guardians.

A broad continuum of services, designed to maintain family stability and to meet the needs of the family over time, continues to be needed by HIV-affected families. By understanding the complex needs of these families, the providers funded by this program are positioned to more effectively meet these needs and help stabilize fragile family systems.

Legal Services programs are designed to provide comprehensive individual and family legal services including legal counsel and advice in such matters as discrimination, domestic violence, entitlements, housing, health care, consumer finance, education, etc. In addition, legal service providers educate clients about legal issues and available services as part of the resolution of a legal problem. Services also include preparation of wills, health care proxies and living wills; family legal services focusing on future care and custody, guardianship, standby guardianship, adoption and foster care for dependent children; and education to case management and community-based health and human service providers about legal issues/services to support and stabilize individuals and families. Legal service providers are required to establish collaborative working relationships with at least one supportive services agency and case management provider to address the issues that may impede individuals and families from completing legal plans.

Supportive services are intended to help families make care and custody decisions and enable the completion of necessary legal documents for the dependent children, address transition issues faced by new caregivers and children, and stabilize the newly blended family following the death of an HIV-positive parent.  Supportive services are not mental health services as defined by clinical practitioner guidelines.  In addition, the short-term supportive services funded by this program may serve as a gateway to access other services for the family, such as mental health, case management and ongoing long-term supportive services.

Ten Legal Services Programs and eight Supportive Services Programs are available throughout New York State.

Contact:

Deborah Hanna
Program Coordinator, Families in Transition
Family and Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV and Hepatitis Health Care
(212) 417-4764
dlh02@health.state.ny.us

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Viral Hepatitis Program

The Viral Hepatitis Program is responsible for the development and maintenance of a Comprehensive Hepatitis C Program. Program activities include hepatitis C prevention (including HCV screening), education, medical care and treatment and policy and planning activities. The overall program goals are to:

  • Prevent the acquisition and transmission of hepatitis C;
  • Build knowledge and awareness of hepatitis C disease, prevention, risk, treatment and medical management;
  • Develop and maintain an infrastructure to provide the highest quality hepatitis C care and treatment; and
  • Foster an effective policy and planning environment at the local, state and national levels.

The Viral Hepatitis Program collaborates and coordinates with the New York State Department of Health (NYSDOH) Bureau of Communicable Disease Control, which is responsible for hepatitis surveillance and outbreak activities; and the Bureau of Immunization, which is responsible for the coordination of the Adult Hepatitis Vaccination Program.

The Viral Hepatitis Program is responsible for the following activities:

Hepatitis C Care and Treatment Programs

The Viral Hepatitis Program currently funds thirteen programs statewide to expand the capacity for hepatitis C care and treatment.  Five programs provide on-site hepatitis C medical care, care coordination, treatment and supportive services in a primary care setting (i.e., community health centers, drug treatment programs and hospital based clinics) for HCV monoinfected persons.  An additional eight HIV primary care programs provide on-site hepatitis C medical care, care coordination, treatment and supportive services to HIV/HCV coinfected persons.

Hepatitis C Screening Program

The Viral Hepatitis Program provides HCV Rapid Antibody Test kits to programs serving at-risk populations, such as needle exchange programs, STD clinics and HIV counseling and testing sites.  Individuals screened for HCV are provided appropriate counseling messages and receive referrals for diagnostic testing, medical care and treatment. 

Hepatitis C Advisory Council

The Hepatitis C Advisory Council was established in March 2008. This 14-member Council, chaired by the NYSDOH Commissioner, is charged with advising the Department in the development and implementation of a comprehensive hepatitis C program including:  prevention and education; surveillance; management and treatment; screening, testing, counseling; and substance use treatment.  Members of the Council include clinicians, patient advocates and others knowledgeable of the growing epidemic of hepatitis C.

Hepatitis C Continuity Program

The Hepatitis C Continuity Program makes it possible for treatment for Hepatitis C to be initiated within New York State Department of Corrections and Community Supervision without regard to the expected incarceration time remaining, since arrangements for continuity of treatment after release are possible.  It enables inmates who initiate treatment prior to release to receive timely referral to appropriate clinics for continuation of treatment.

Statewide Viral Hepatitis Conference

The New York StateStatewide Viral Hepatitis Conference (formerly known as the Hepatitis C Conference) provides the most up-to-date information on hepatitis B and C epidemiology, diagnosis, management, treatment and prevention, which assists health and human service providers to offer the most effective care to persons infected with chronic hepatitis B and C.  Since 2002, the conference has attracted over 1,000 participants, including health and human service providers and consumers.

Viral Hepatitis Strategic Plan

The mission of the 2010-2015 New York State Viral Hepatitis Strategic Plan is to outline a coordinated, comprehensive and systematic approach that will decrease the incidence and reduce the morbidity and mortality of viral hepatitis.  The vision is to eliminate new hepatitis A, B and C infections and to improve the quality of life of those living with chronic hepatitis B and C.

Contact:

Colleen Flanigan, RN, MS
Director, Viral Hepatitis Program
Division of HIV and Hepatitis Health Care
518-486-6806
caf03@health.state.ny.us

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Oral Health Care

The New York State Department of Health AIDS Institute recognizes the importance of oral health care delivery as an integral component of quality HIV primary care.  In addition, the AIDS Institute is under contract with the New York/New Jersey AIDS   Education and Training Center (AETC) as the Oral Health Regional Resource Center (RRC).  To address the varied needs and services associated with dental care, the AIDS Institute offers the following:

  • Clinical Practice Guidelines:  Oral Health Care for People with HIV Infection.  These guidelines are intended to provide dentists and other primary care team members with important clinical information to address the oral health needs of HIV patients in a multidisciplinary manner.  www.hivguidelines.org
  • Educational presentations:  The New York/New Jersey AETC RRC offers specialized trainings in HIV oral health care to meet specific agency and individual needs of dentists, dental hygienists, dental assistants and primary care clinicians while providing professional development credits.  Training is available in a variety of formats ranging from didactic presentations to case presentations, clinical consultations and customized preceptorships.  Available educational modules include but are not limited to the following:
    • diagnosis and management of oral lesions;
    • post-exposure prophylaxis and accident prevention;
    • legal and ethical dental issues;
    • dental treatment modifications for HIV infected patients; and
    • dental management of HIV infected pediatric patients.
  • HIV Oral Health Resource Directory:  This resource, organized by region and borough, is intended as a referral tool for providers and individuals seeking oral health services. 
  • Technical assistance:  Technical assistance is available to oral health providers and administrators to assist in the development of new or expanded dental services, including HIV testing in the dental chair, responsive to the needs of HIV-infected persons.
  • Clinical performance quality indicators:  The Oral Health Guidelines Committee has developed quality of care performance indicators for HIV health care facilities that provide dental services.

Contact:

Howard Lavigne
Deputy Director, HIV Clinical Education
Office of the Medical Director
(315) 477-8479
hel01@health.state.ny.us

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HIV/AIDS Targeted Case Management/Health Home Program

The Bureau of Community Support Services used to oversee the HIV/AIDS Targeted Case Management (TCM) Program, also known as COBRA Case Management.  Agencies that participated in the HIV/AIDS TCM program provided comprehensive case management services targeted to intensive need Medicaid eligible HIV+ persons and their families.  As of January 2012, this program has been transitioned to provide care management in a Health Home model of care for Medicaid recipients with HIV disease and/or eligible chronic conditions.

The goals of the health home model are to reduce preventable hospitalizations, avoid nursing home placement, prevent emergency room usage for care, and stabilize all psychosocial issues so as to achieve better health outcomes. For more information regarding the Health Home model of comprehensive care management, please refer to:

Contact:
Lisa Tackley
Bureau of Community Support Services
Division of HIV and Hepatitis Health Care
(518) 486-1323
llt02@health.state.ny.us

or

Mark Perez
Bureau of Community Support Services
Division of HIV and Hepatitis Health Care
(518) 486-1323
msp02@health.state.ny.us