Appendix A:
Glossary of Care Act Terms  TOP

A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z

AACTG (Adult AIDS Clinical Trials Group)  TOP

Largest HIV clinical trials organization in the world, which plays major role in setting standards of care for HIV infection and opportunistic diseases related to HIV/AIDS in the United States and the developed world. The AACTG is composed of, and directed by, leading clinical scientists in HIV/AIDS therapeutic research.

ACTG (AIDS Clinical Trials Group)

A network of medical centers around the country in which federally funded clinical trials are conducted to test the safety and efficacy of experimental treatments for AIDS and HIV infection. These studies are funded by the NIH National Institute of Allergy and Infectious Diseases (NIAID).

ADAP (AIDS Drug Assistance Program)

Administered by States and authorized under Title II of the CARE Act, provides FDA-approved medications to low-income individuals with HIV disease who have limited or no coverage from private insurance or Medicaid. ADAP funds may also be used to purchase insurance for uninsured CARE Act clients as long as the insurance costs do not exceed the cost of drugs through ADAP and the drugs available through the insurance program at least match those offered through ADAP.

Administrative or Fiscal Agent

Entity that functions to assist the grantee, consortium, or other planning body in carrying out administrative activities (e.g., disbursing program funds, developing reimbursement and accounting systems, developing Requests for Proposals [RFPs], monitoring contracts).

AETC (AIDS Education and Training Center)

Regional centers providing education and training for primary care professionals and other AIDS-related personnel. AETCs are authorized under Part F of the CARE Act and administered by the HRSA HIV/AIDS Bureau’s Division of Training and Technical Assistance (DTTA).

AHRQ (Agency for Healthcare Research and Quality)

Federal agency within HHS that supports research designed to improve the outcomes and quality of health care, reduce its costs, address patient safety and medical errors, and broaden access to effective services.

AIDS (Acquired Immunodeficiency Syndrome)

A disease caused by the human immunodeficiency virus.

Antiretroviral

A substance that fights against a retrovirus, such as HIV. (See Retrovirus)

ASO (AIDS service organization)

An organization that provides primary medical care and/or support services to populations infected with and affected by HIV disease.

Capacity  TOP

Core competencies that substantially contribute to an organization’s ability to deliver effective HIV/AIDS primary medical care and health-related support services. Capacity development activities should increase access to the HIV/AIDS service system and reduce disparities in care among underserved PLWH in the EMA.

CARE Act (Ryan White Comprehensive AIDS Resources Emergency Act)

Federal legislation created to address the unmet health care and service needs of people living with HIV Disease (PLWH) disease and their families. It was enacted in 1990 and reauthorized in 1996 and 2000.

CADR (CARE Act Data Report)

A provider-based report generating aggregate client, provider, and service data for all CARE Act programs. Reports information on all clients who receive at least one service during the reporting period. Replaces the Annual Administrative Report (AAR) used for Title I and Title II as well as separate Title III and Title IV data reports.

CBO (community-based organization)

An organization that provides services to locally defined populations, which may or may not include populations infected with or affected by HIV disease.

CDC (Centers for Disease Control and Prevention)

Federal agency within HHS that administers disease prevention programs including HIV/AIDS prevention.

CD4 or CD4+ Cells

Also known as “helper” T-cells, these cells are responsible for coordinating much of the immune response. HIV’s preferred targets are cells that have a docking molecule called “cluster designation 4” (CD4) on their surfaces. Cells with this molecule are known as CD4-positive (CD4+) cells. Destruction of CD4+ lymphocytes is the major cause of the immunodeficiency observed in AIDS, and decreasing CD4 levels appear to be the best indicator for developing opportunistic infections.

CD4 Cell Count

The number of T-helper lymphocytes per cubic millimeter of blood. The CD4 count is a good predictor of immunity. As CD4 cell count declines, the risk of developing opportunistic infections increases. The normal adult range for CD4 cell counts is 500 to 1500 per cubic millimeter of blood. (The normal range for infants is considerably higher and slowly declines to adult values by age 6 years.) CD4 counts should be rechecked at least every 6 to 12 months if CD4 counts are greater than 500/mm3. If the count is lower, testing every 3 months is advised. (In children with HIV infection, CD4 values should be checked every 3 months.) A CD4 count of 200 or less is an AIDS-defining condition.

Chief Elected Official (CEO)

The official recipient of Title I or Title II CARE Act funds. For Title I, this is usually a city mayor, county executive, or chair of the county board of supervisors. For Title II, this is usually the governor. The CEO is ultimately responsible for administering all aspects of their title’s CARE Act funds and ensuring that all legal requirements are met.

CMS (Centers for Medicare and Medicaid Services)

Federal agency within HHS that administers the Medicaid, Medicare, State Child Health Insurance Program (SCHIP), and the Health Insurance Portability and Accountability Act (HIPAA).

Co-morbidity

A disease or condition, such as mental illness or substance abuse, co-existing with HIV disease.

Community Forum or Public Meeting

A small-group method of collecting information from community members in which a community meeting is used to provide a directed but highly interactive discussion. Similar to but less formal than a focus group, it usually includes a larger group; participants are often self-selected (i.e., not randomly selected to attend).

Comprehensive Planning

The process of determining the organization and delivery of HIV services. This strategy is used by planning bodies to improve decision-making about services and maintain a continuum of care for PLWH.

Community Health Centers

Federally-funded by HRSA’s Bureau of Primary Health Care, centers provide family-oriented primary and preventive health care services for people living in rural and urban medically underserved communities.

Consortium/HIV Care Consortium

A regional or statewide planning entity established by many State grantees under Title II of the CARE Act to plan and sometimes administer Title II services. An association of health care and support service agencies serving PLWH under Title II of the CARE Act.

Continuous Quality Improvement

An ongoing process that involves organization members in monitoring and evaluating programs to continuously improve service delivery. CQI seeks to prevent problems and to maximize the quality of care by identifying opportunities for improvement.

Continuum of Care

An approach that helps communities plan for and provide a full range of emergency and long-term service resources to address the various needs of PLWH.

CPCRA (Community Programs for Clinical Research on AIDS)

Community-based clinical trials network that obtains evidence to guide clinicians and PLWH on the most appropriate use of available HIV therapies.

Cultural Competence

The knowledge, understanding, and skills to work effectively with individuals from differing cultural backgrounds.

DCBP (Division of Community Based Programs)  TOP

The division within HRSA’s HIV/AIDS Bureau that is responsible for administering Title III, Title IV, and the HIV/AIDS Dental Reimbursement Program.

DSS (Division of Service Systems)

The division within HRSA’s HIV/AIDS Bureau that administers Title I and Title II of the CARE Act.

DTTA (Division of Training and Technical Assistance)

The division within HRSA’s HIV/AIDS Bureau that administers the AIDS Education and Training Centers (AETC) Program and technical assistance and training activities of the HIV/AIDS Bureau.

Early Intervention Services (EIS)  TOP

Activities designed to identify individuals who are HIV-positive and get them into care as quickly as possible. As funded through Titles I and II of the CARE Act, includes outreach, counseling and testing, information and referral services. Under Title III of the CARE Act, also includes comprehensive primary medical care for individuals living with HIV/AIDS.

Eligible Metropolitan Area (EMA)

Geographic areas highly-impacted by HIV/AIDS that are eligible to receive Title I CARE Act funds.

EIA (Enzyme-Linked Immunosorbent Assay)

The most common test used to detect the presence of HIV antibodies in the blood, which indicate ongoing HIV infection. A positive ELISA test result must be confirmed by another test called a Western Blot.

Epidemic

A disease that occurs clearly in excess of normal expectation and spreads rapidly through a demographic segment of the human population. Epidemic diseases can be spread from person to person or from a contaminated source such as food or water.

Epidemiologic Profile

A description of the current status, distribution, and impact of an infectious disease or other health-related condition in a specified geographic area.

Epidemiology

The branch of medical science that studies the incidence, distribution, and control of disease in a population.

Exposure Category

In describing HIV/AIDS cases, same as transmission categories; how an individual may have been exposed to HIV, such as injecting drug use, male-to-male sexual contact, and heterosexual contact.

Family Centered Care  TOP

A model in which systems of care under Ryan White Title IV are designed to address the needs of PLWH and affected family members as a unit, providing or arranging for a full range of services. Family structures may range from the traditional, biological family unit to non-traditional family units with partners, significant others, and unrelated caregivers.

FDA (Food and Drug Administration)

Federal agency within HHS responsible for ensuring the safety and effectiveness of drugs, biologics, vaccines, and medical devices used (among others) in the diagnosis, treatment, and prevention of HIV infection, AIDS, and AIDS-related opportunistic infections. The FDA also works with the blood banking industry to safeguard the nation’s blood supply.

Financial Status Report (FSR - Form 269)

A report that is required to be submitted within 90 days after the end of the budget period that serves as documentation of the financial status of grants according to the official accounting records of the grantee organization.

Formula Grant Application

The application used by EMAs and States each year to request an amount of CARE Act funding which is determined by a formula based on the number of reported AIDS cases in their location and other factors. The application responds to guidance from DSS on program requirements and expectations.

Genotypic Assay  TOP

A test that analyzes a sample of the HIV virus from the patient’s blood to identify actual mutations in the virus that are associated with resistance to specific drugs.

Grantee

The recipient of CARE Act funds responsible for administering the award.

HAART (Highly Active Antiretroviral Therapy)  TOP

HIV treatment using multiple antiretroviral drugs to reduce viral load to undetectable levels and maintain/increase CD4 levels.

Health Care for the Homeless Health Center

A grantee funded under section 330(h) of the Public Health Service Act to provide primary health and related services to homeless individuals.

Health Insurance Continuity Program (HICP)

A program primarily under Title II of the CARE Act that makes premium payments, co-payments, deductibles, and/or risk pool payments on behalf of a client to purchase/maintain health insurance coverage.

High-Risk Insurance Pool

A State health insurance program that provides coverage for individuals who are denied coverage due to a pre-existing condition or who have health conditions that would normally prevent them from purchasing coverage in the private market.

HIV/AIDS Bureau (HAB)

The bureau within the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) that is responsible for administering the Ryan White CARE Act.

HIV/AIDS Dental Reimbursement Program

The program within the HRSA HIV/AIDS Bureau’s Division of Community Based Programs that assists with uncompensated costs incurred in providing oral health treatment to PLWH.

HIV Disease

Any signs, symptoms, or other adverse health effects due to the human immunodeficiency virus.

Home and Community Based Care

A category of eligible services that States may fund under Title II of the CARE Act.

HOPWA (Housing Opportunities for People With AIDS)

A program administered by the U.S. Department of Housing and Urban Development (HUD) that provides funding to support housing for PLWH and their families.

HRSA (Health Resources and Services Administration)

The agency of the U.S. Department of Health and Human Services that administers various primary care programs for the medically underserved, including the Ryan White CARE Act.

HUD (U.S. Department of Housing and Urban Development)

The Federal agency responsible for administering community development, affordable housing, and other programs including Housing Opportunities for People with AIDS (HOPWA).

IDU (Injection Drug User)  TOP

IGA (Intergovernmental Agreement)

A written agreement between a governmental agency and an outside agency that provides HIV services.

Incidence

The number of new cases of a disease that occur during a specified time period.

Incidence Rate

The number of new cases of a disease or condition that occur in a defined population during a specified time period, often expressed per 100,000 persons. AIDS incidence rates are often expressed this way.

Lead Agency  TOP

The agency within a Title II consortium that is responsible for contract administration; also called a fiscal agent (an incorporated consortium sometimes serves as the lead agency)

Medicaid Spend-down  TOP

A process whereby an individual who meets the Medicaid medical eligibility criteria, but has income that exceeds the financial eligibility ceiling, may “spend down” to eligibility level. The individual accomplishes spend-down by deducting accrued medically related expenses from countable income. Most State Medicaid programs offer an optional category of eligibility, the “medically needy” eligibility category, for these individuals.

Migrant Health Centers

Federally-funded by HRSA’s Bureau of Primary Health Care, centers provide a broad array of culturally and linguistically competent medical and support services to migrant and seasonal farm workers (MSFW) and their families.

MAI (Minority AIDS Initiative)

A national HHS initiative that provides special resources to reduce the spread of HIV/AIDS and improve health outcomes for people living with HIV disease within communities of color. Enacted to address the disproportionate impact of the disease in such communities. Formerly referred to as the Congressional Black Caucus Initiative because of that body’s leadership in its development.

Multiply Diagnosed

A person having multiple morbidities (e.g., substance abuse and HIV infection) (see co-morbidity).

Needs Assessment  TOP

A process of collecting information about the needs of PLWH (both those receiving care and those not in care), identifying current resources (CARE Act and other) available to meet those needs, and determining what gaps in care exist.

NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor, called “non-nuke”)

A class of antiretroviral agents (e.g., delavirdine, nevirapine, efavirenz) that stops HIV production by binding directly onto an enzyme (reverse transcriptase) in a CD4+ cell and preventing the conversion of HIV’s RNA to DNA.

Nucleoside Analog (Nucleoside Analog Reverse Transcriptase Inhibitor, NRTI, called “nuke”)

The first effective class of antiviral drugs (e.g., AZT or ZDV, ddI, ddC, d4T, ABC). NRTIs act by incorporating themselves into the HIV DNA, thereby stopping the building process. The resulting HIV DNA is incomplete and unable to create new virus.

OMB (Office of Management and Budget)  TOP

The office within the executive branch of the Federal government that prepares the President’s annual budget, develops the Federal government’s fiscal program, oversees administration of the budget, and reviews government regulations.

Opportunistic Infection (OI) or Opportunistic Condition

An infection or cancer that occurs in persons with weak immune systems due to HIV, cancer, or immunosuppressive drugs such as corticosteroids or chemotherapy. Kaposi’s Sarcoma (KS), pneumocystis pneumonia (PCP), toxoplasmosis, and cytomegalovirus (CMV) are all examples of opportunistic infections.

OSE (Office of Science and Epidemiology)

The office within HRSA’s HIV/AIDS Bureau that administers the SPNS Program, HIV/AIDS evaluation studies, and the Cross-Title Data Report Form.

PACTG (Pediatric AIDS Clinical Trials Group)  TOP

Body that evaluates treatments for HIV-infected children and adolescents and develops new approaches for the interruption of mother-to-infant transmission.

Part F

The part of the CARE Act that includes the AETC Program, the SPNS Program, and the HIV/ AIDS Dental Reimbursement Program.

PCR (Polymerase Chain Reaction)

A laboratory process that selects a DNA segment from a mixture of DNA chains and rapidly replicates it to create a sample of a piece of DNA. For HIV, this is called RT-PCR, which is a laboratory technique that can detect and quantify the amount of HIV (viral load) in a person’s blood or lymph nodes. PCR is also used for the diagnosis of HIV infection in exposed infants.

Phenotypic Assay

A procedure whereby sample DNA of a patient’s HIV is tested against various antiretroviral drugs to see if the virus is susceptible or resistant to these drug(s).

PHS (Public Health Service)

An administrative entity of the U.S. Department of Health and Human Services.

Planning Council

A planning body appointed or established by the Chief Elected Official of an EMA whose basic function is to assess needs, establish a plan for the delivery of HIV care in the EMA, and establish priorities for the use of Title I CARE Act funds.

Planning Process

Steps taken and methods used to collect information, analyze and interpret it, set priorities, and prepare a plan for rational decision making.

PLWH (People Living with HIV Disease)

Prevalence

The total number of persons in a defined population living with a specific disease or condition at a given time (compared to incidence, which is the number of new cases).

Prevalence Rate

The proportion of a population living at a given time with a condition or disease (compared to the incidence rate, which refers to new cases).

Priority Setting

The process used to establish priorities among service categories, to ensure consistency with locally identified needs, and to address how best to meet each priority.

Prophylaxis

Treatment to prevent the onset of a particular disease (primary prophylaxis) or recurrence of symptoms in an existing infection that has previously been brought under control (secondary prophylaxis).

Protease

An enzyme that triggers the breakdown of proteins. HIV’s protease enzyme breaks apart long strands of viral protein into separate proteins constituting the viral core and the enzymes it contains. HIV protease acts as new virus particles are budding off a cell membrane.

Protease Inhibitor

A drug that binds to and blocks HIV protease from working, thus preventing the production of new functional viral particles.

Quality  TOP

The degree to which a health or social service meets or exceeds established professional standards and user expectations.

QA (Quality Assurance)

The process of identifying problems in service delivery, designing activities to overcome these problems, and following up to ensure that no new problems have developed and that corrective actions have been effective. The emphasis is on meeting minimum standards of care.

QI (Quality Improvement)

Also called Continuous Quality Improvement (CQI). An ongoing process of monitoring and evaluating activities and outcomes in order to continuously improve service delivery. CQI seeks to prevent problems and to maximize the quality of care.

Reflectiveness  TOP

The extent to which the demographics of the planning body’s membership look like the demographics of the epidemic in the service area.

Reliability

The consistency of a measure or question in obtaining very similar or identical results when used repeatedly; for example, if you repeated a blood test three times on the same blood sample, it would be reliable if it generated the same results each time.

Representative

Term used to indicate that a sample is similar to the population from which it was drawn, and therefore can be used to make inferences about that population.

RFP (Request for Proposals)

An open and competitive process for selecting providers of services (sometimes called RFA or Request for Application).

Resource Allocation

The Title I planning council responsibility to assign CARE Act amounts or percentages to established priorities across specific service categories, geographic areas, populations, or subpopulations.

Retrovirus

A type of virus that, when not infecting a cell, stores its genetic information on a single-stranded RNA molecule instead of the more usual double-stranded DNA. HIV is an example of a retrovirus. After a retrovirus penetrates a cell, it constructs a DNA version of its genes using a special enzyme, reverse transcriptase. This DNA then becomes part of the cell’s genetic material.

Reverse Transcriptase

A uniquely viral enzyme that constructs DNA from an RNA template, which is an essential step in the life cycle of a retrovirus such as HIV. The RNA-based genes of HIV and other retroviruses must be converted to DNA if they are to integrate into the cellular genome. (See Retrovirus.)

Risk Factor or Risk Behavior

Behavior or other factor that places a person at risk for disease; for HIV/AIDS, this includes such factors as male-to-male sexual contact, injection drug use, and commercial sex work.

RT-PCR (Reverse Transcriptase Polymerase Chain Reaction)

A laboratory technique that can detect and quantify the amount of HIV (viral load) in a person’s blood or lymph nodes.

Salvage Therapy  TOP

A treatment effort for people who are not responding to, or cannot tolerate the preferred, recommended treatments for a particular condition. In the context of HIV infection, drug treatments that are used or studied in individuals who have failed one or more HIV drug regimens. In this case, failed refers to the inability to achieve or sustain low viral load levels.

SAMHSA (Substance Abuse and Mental Health Services Administration)

Federal agency within HHS that administers programs in substance abuse and mental health.

SCSN (Statewide Coordinated Statement of Need)

A written statement of need for the entire State developed through a process designed to collaboratively identify significant HIV issues and maximize CARE Act program coordination. The SCSN process is convened by the Title II grantee, with equal responsibility and input by all programs.

Section 340B Drug Discount Program

A program administered by the HRSA’s Bureau of Primary Care, Office of Pharmacy Affairs established by Section 340B of the Veteran’s Health Care Act of 1992, which limits the cost of drugs to Federal purchasers and to certain grantees of Federal agencies.

Seroconversion

The development of detectable antibodies to HIV in the blood as a result of infection. It normally takes several weeks to several months for antibodies to the virus to develop after HIV transmission. When antibodies to HIV appear in the blood, a person will test positive in the standard ELISA test for HIV.

Seroprevalence

The number of persons in a defined population who test HIV-positive based on HIV testing of blood specimens. (Seroprevalence is often presented either as a percent of the total specimens tested or as a rate per 100,000 persons tested.)

Service Gaps

All the service needs of all PLWH except for the need for primary health care for individuals who know their status but are not in care. Service gaps include additional need for primary health care for those already receiving primary medical care (“in care”).

SPNS (Special Projects of National Significance)

A health services demonstration, research, and evaluation program funded under Part F of the CARE Act to identify innovative models of HIV care. SPNS projects are awarded competitively.

STD (Sexually Transmitted Disease)

Surveillance

An ongoing, systematic process of collecting, analyzing and using data on specific health conditions and diseases (e.g., Centers for Disease Control and Prevention surveillance system for AIDS cases).

Surveillance Report

A report providing information on the number of reported cases of a disease such as AIDS, nationally and for specific sub-populations.

TA (Technical Assistance)  TOP

The delivery of practical program and technical support to the CARE Act community. TA is to assist grantees, planning bodies, and affected communities in designing, implementing, and evaluating CARE Act-supported planning and primary care service delivery systems.

Target Population

A population to be reached through some action or intervention; may refer to groups with specific demographic or geographic characteristics.

Title I

The part of the CARE Act that provides emergency assistance to localities (EMAs) disproportionately affected by the HIV/AIDS epidemic.

Title II

The part of the CARE Act that provides funds to States and territories for primary health care (including HIV treatments through the AIDS Drug Assistance Program, ADAP) and support services that enhance access to care to PLWH and their families.

Title III

The part of the CARE Act that supports outpatient primary medical care and early intervention services to PLWH through grants to public and private non-profit organizations. Title III also funds capacity development and planning grants to prepare programs to provide EIS services.

Title IV

The part of the CARE Act that supports coordinated services and access to research for children, youth, and women with HIV disease and their families.

Transmission Category

A grouping of disease exposure and infection routes; in relation to HIV disease, exposure groupings include, for example, men who have sex with men, injection drug use, heterosexual contact, and perinatal transmission.

Unmet Need  TOP

The unmet need for primary health services among individuals who know their HIV status but are not receiving primary health care.

Viral Load  TOP

In relation to HIV, the quantity of HIV RNA in the blood. Viral load is used as a predictor of disease progression. Viral load test results are expressed as the number of copies per milliliter of blood plasma.

Viremia

The presence of virus in blood or blood plasma. Plasma viremia is a quantitative measurement of HIV levels similar to viral load but is accomplished by seeing how much of a patient’s plasma is required to spark an HIV infection in a laboratory cell culture.

Western Blot  TOP

A test for detecting the specific antibodies to HIV in a person’s blood. It is commonly used to verify positive EIA tests. A Western Blot test is more reliable than the EIA, but it is more difficult and more costly to perform. All positive HIV antibody tests should be confirmed with a Western Blot test.

Wild Type Virus

HIV that has not been exposed to antiviral drugs and therefore has not accumulated mutations conferring drug resistance.

Gay Men’s Health Crisis. Treatment Issues. AIDS Glossary. 

AIDS Education Global Information System (AEGIS). Database [on-line resource]. 

Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB). Ryan White CARE Act Needs Assessment Guide. Rockville, MD: U.S. Department of Health and Human Services, 2002.

Levi, Jeffrey, Gambrell, Alan, Jones, Paula, et.al. Can Access to the Private Individual Insurance Market be Increased for People Living with HIV? Washington, DC: The Center for Health Policy Research, The George Washington University School of Public Health and Health Services, 1999.

HHS, Center for Medicare and Medicaid Services. Program Memorandum No. AB-97-25, dated January 1998 [available on-line]. 

U.S. Department of Housing and Urban Development (HUD). Glossary: Form HUD-40076-COC. Washington, DC.