Glossary of Ryan White HIV/AIDS Program-Related Terms
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Below are terms used most frequently in HRSA's Ryan White HIV/AIDS Program (RWHAP). See the sidebar for the specialized glossaries covering such areas as HIV/AIDS medications, planning, and health insurance.
Administrative or Fiscal Agent
Entity that functions to assist the Ryan White HIV/AIDS Program recipient or planning body in carrying out administrative activities (e.g., disbursing program funds, developing reimbursement and accounting systems, developing funding announcements, monitoring contracts).
Federal law comprised of expanded health insurance coverage and health care delivery innovations designed to achieve better health outcomes by increasing the number of insured Americans, reducing care costs, and improving the overall American health care system. Enacted in 2010 as the Patient Protection and Affordable Care Act.
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.
Administered by States and authorized under Part B of the Ryan White HIV/AIDS Treatment Extension 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 Ryan White HIV/AIDS Program 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.
Reporting requirement for ADAPs to provide client-level data on individuals served, services being delivered, and costs associated with these services.
Acquired Immune Deficiency Syndrome. A disease caused by the human immunodeficiency virus (HIV).
Regional centers providing education and training for primary care professionals and other AIDS-related personnel. AETCs are authorized under Part F of the Ryan White HIV/AIDS Program.
AIDS Service Organization (ASO)
An organization that provides primary medical care and/or support services to populations infected with and affected by HIV disease.
Annual Gross Income
A measure of income. There are several ways to measure an individual’s Annual Gross Income. For example, these forms of income could be used by the provider for the purposes of imposition of charges:
- Gross Income: the total amount of income earned from all sources during the calendar year before taxes.
- Adjusted Gross Income: gross income less deductions.
An aggressive anti-HIV treatment including a combination of three or more drugs with activity against HIV that is designed to reduce viral load to undetectable levels.
Any RWHAP service with a distinct fee typically charged in the local market. In the broader healthcare community this distinct fee is often referred to as a usual, customary, and reasonable (UCR) fee.
Cap on Charges
The limitation on aggregate charges imposed during the calendar year based on patient’s annual gross income. All fees must be waived once a RWHAP patient reaches their cap for that calendar year.
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 people living with HIV (PLWH) in the EMA.
CARE Act (Ryan White Comprehensive AIDS Resources Emergency Act)
Now referred to as the Ryan White HIV/AIDS Program, this was the name of the original federal legislation created to address the unmet health care and service needs of people living with HIV Disease (PLWH) disease and their families. The legislation was enacted in 1990 and reauthorized in 1996 and 2000. The legislation was subsequently reauthorized as the Ryan White HIV/AIDS Treatment Modernization Act of 2006 and later as the Ryan White HIV/AIDS Treatment Extension Act of 2009.
CDC/HRSA Advisory Committee on HIV, Viral Hepatitis and STD Prevention and Treatment
This advisory committee, often referred to as the CHAC, advises the Secretary, HHS; the Director, CDC; and the Administrator, HRSA, regarding objectives, strategies, policies, and priorities for HIV, Viral Hepatitis, and STD prevention and treatment efforts.
Federal agency within HHS that administers disease prevention programs including HIV/AIDS prevention.
Federal agency within HHS that administers the Medicaid, Medicare, the Children's Health Insurance Program (CHIP) and the Health Insurance Marketplace.
Chief Elected Official (CEO)
The official recipient of Part A or Part B Ryan White HIV/AIDS Program funds. For Part A, this is usually a city mayor, county executive, or chair of the county board of supervisors. For Part B, this is usually the governor. The CEO is ultimately responsible for administering all aspects of their Part's RWHAP Act funds and ensuring that all legal requirements are met.
Client Level Data (CLD)
Information collected on each client eligible for and receiving RWHAP core medical services or support services. The data elements reported per client are determined by the specific RWHAP services that the agency is funded to provide.
Community-based Organization (CBO)
An organization that provides services to locally defined populations, which may or may not include populations infected with or affected by HIV disease.
Community Based Dental Partnership Program (CBDPP)
A program under the Ryan White HIV/AIDS Program (Part F) that delivers HIV/AIDS dental care while simultaneously training dental professionals in these areas in order to expand community capacity to deliver HIV oral health care.
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).
A disease or condition, such as hepatitis, mental illness or substance abuse, co-existing with HIV disease.
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
See Health Centers.
Consortium/HIV Care Consortium
A regional or statewide planning entity established by many State recipient under Part B of the Ryan White HIV/AIDS Program to plan and sometimes administer Part B services. An association of health care and support service agencies serving PLWHA under Part B.
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.
The extent to which a person living with HIV disease is engaged in HIV/AIDS care and is realizing the full advantages of care and treatment—from initial diagnosis and engagement in care to full viral suppression. Generally referred to as the HIV Care Continuum.
Core Medical Services
Essential, direct, health care services for HIV/AIDS care specified in the Ryan White legislation. Recipient/subrecipient expenditures are limited to core medical services, support services, and administrative expenses.
The knowledge, understanding, and skills to work effectively with individuals from differing cultural backgrounds.
Papers and documents required from clients, as defined by the recipient, in order to assure all RWHAP statutory requirements are met.
Early Intervention Services (EIS)
Activities designed to identify individuals who are HIV-positive and get them into care as quickly as possible. As funded through Parts A and B of the Ryan White HIV/AIDS Program, includes outreach, counseling and testing, information and referral services. Under Part C Ryan White HIV/AIDS Program, 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 Ryan White HIV/AIDS Program Part A funds To be an eligible EMA, an area must have reported more than 2,000 AIDS cases in the most recent 5 years and have a population of at least 50,000. See also Transitional Grant Area, TGA.
A method of data collection based on a client's ability to receive federally funded RWHAP services using established recipient criteria.
A description of the current status, distribution, and impact of an infectious disease or other health-related condition in a specified geographic area. Specific to HIV planning, a description of the burden of HIV in the population of an area in terms of socio-demographic, geographic, behavioral, and clinical characteristics of persons newly diagnosed with HIV, PLWH, and persons at higher risk for infection.
The branch of medical science that studies the incidence, distribution, and control of disease in a population.
eUCI (encrypted Unique Client Identifier)
An alphanumeric code that distinguishes one RWHAP client from all others and is the same for the client across all provider settings.
A model in which systems of care under Ryan White Part D are designed to address the needs of PLWHA 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.
Federal Poverty Level (FPL)
A measure of income issued every year by HHS. Federal poverty levels are commonly used to determine eligibility for certain programs and benefits such as Medicaid, Food Stamps, the Children’s Health Insurance Program (CHIP), and RWHAP.
The method of billing for health services whereby a physician or other health service provider charges the payer (whether it be the patient or his or her health insurance plan) separately for each patient encounter or service rendered.
A complete listing of billable services, those with UCR fees, and their associated fees based on locally prevailing rates or charges. A fee schedule is used by healthcare providers to identify which services they bill for and for how much. A fee schedule is not a schedule of charges. A fee schedule is not required by the RWHAP legislation, but it may be useful as the basis for a schedule of charges. Having one in place is considered a best practice and, for those multi-funded clinics, is a requirement for HRSA Bureau of Primary Health Care (BPHC) grant recipients.
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 recipient organization.
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.
Grantee Contract Management System
An electronic data system that RWHAP recipients use to manage their subrecipient contracts.
Community-based and patient-directed organizations funded by HRSA that serve populations with limited access to health care. These include low income populations, the uninsured, those with limited English proficiency, migrant and seasonal farmworkers, individuals and families experiencing homelessness, and those living in public housing.
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 HIV/AIDS Program.
The bureau within HRSA of the U.S. Department of Health and Human Services (HHS) that is responsible for administering the Ryan White HIV/AIDS Program. See the HRSA HAB Program Administration fact sheet.
HIV Care Continuum
The stages of HIV care, from initial diagnosis to achieving the goal of viral suppression. The effectiveness of HIV testing and care in a given jurisdiction is typically depicted as the proportion of individuals living with HIV who are engaged at each stage.
Any signs, symptoms, or other adverse health effects due to the human immunodeficiency virus.
Those charges a RWHAP recipient imposes on the patient plus any other out of-pocket charges related to their HIV care (as determined by their provider) that a patient incurs and reports to their RWHAP recipient/provider. These charges can be from any provider as long as the service is a RWHAP allowable service.
A program administered by the U.S. Department of Housing and Urban Development (HUD) that provides funding to support housing for PLWHA and their families.
The Federal agency responsible for administering community development, affordable housing, and other programs including Housing Opportunities for People with AIDS (HOPWA).
Imposition of Charges
All activities, policies, and procedures related to assessing RWHAP patient charges as outlined in legislation.
The number of new cases of a disease that occur during a specified time period.
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.
Intergovernmental Agreement (IGA)
A written agreement between a governmental agency and an outside agency that provides services.
The agency within a Part B consortium that is responsible for contract administration; also called a fiscal agent (an incorporated consortium sometimes serves as the lead agency).
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.
Minority AIDS Initiative (MAI)
A national HHS initiative that provides special resources to reduce the spread of HIV/AIDS and improve health outcomes for people living with HIV/AIDS 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.
A person having multiple morbidities (e.g., hepatitis and HIV, substance abuse and HIV infection) (see co-morbidity).
A process of collecting information about the needs of PLWH (both those receiving care and those not in care), identifying current resources (Ryan White HIV/AIDS Program and other) available to meet those needs, and determining what gaps in care exist.
A fee greater than zero.
Notice of Funding Opportunity (NOFO)
An open and competitive process for selecting providers of services.
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.
An infection or cancer that occurs in people with weak immune systems due to HIV, cancer, or immunosuppressive drugs such as corticosteroids or chemotherapy. Kaposi’s sarcoma, Pneumocystis jiroveci pneumonia, toxoplasmosis, and cytomegalovirus are all examples of such infections.
Patient Assistance Programs (PAPs)
Programs operated by pharmaceutical companies and foundations that provide medicines at little or no cost to eligible patients.
The part of the Ryan White HIV/AIDS Program that provides emergency assistance to localities disproportionately affected by the HIV/AIDS epidemic.
The part of the Ryan White HIV/AIDS Program 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 PLWHA and their families.p
The part of the Ryan White HIV/AIDS Program that supports outpatient primary medical care and early intervention services (EIS) to PLWH through grants to public and private non-profit organizations. Part C also funds planning grants to prepare programs to provide EIS services.
The part of the Ryan White HIV/AIDS Program that supports family-centered, comprehensive care to women, infants, children, and youth living with HIV.
National and regional centers providing education and training for primary care professionals and other AIDS-related personnel.
The part of the Ryan White HIV/AIDS Program that provides additional funding for oral health care for people with HIV through the HIV/AIDS Dental Reimbursement Program and the Community-Based Dental Partnership Program.
The part of the Ryan White HIV/AIDS Program that funds demonstration and evaluation of innovative models of care delivery for hard-to-reach populations.
Part F: Minority AIDS Initiative
The Minority AIDS Initiative provides funding to evaluate and address the impact of HIV/AIDS on disproportionately affected minority populations.
People Living with HIV (PLWH)
Descriptive term for persons living with HIV disease.
Planning Council/Planning Body
There are various types of planning groups. For Part A of the RWHAP, a planning council is a body appointed or established by the Chief Elected Official with responsibility to assess needs, establish a plan for the delivery of HIV care in the area, and establish priorities for the use of Part A funds. Part B planning bodies conduct similar tasks but do not establish service dollar allocations. In addition, jurisdictions directly funded by CDC are responsible for convening planning bodies to address HIV prevention, care and treatment issues. Many jurisdictions facilitate collaboration through joint care/prevention planning bodies and/or shared planning tasks.
Steps taken and methods used to collect information, analyze and interpret it, set priorities, and prepare a plan for rational decision making.
Pre-exposure prophylaxis is a prevention method for people at higher risk for HIV exposure and involves taking an antiretroviral pill every day to greatly reduce, if not eliminate, the risk of becoming infected with HIV if exposed to the virus.
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).
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).
Primary Health Care Service
Any preventive, diagnostic, or therapeutic health service received on an outpatient basis by a client living with HIV. Examples include medical, subspecialty care, dental, nutrition, mental health, or substance use disorder treatment services; medical case management; pharmacy services; radiology, laboratory, and other tests used for diagnosis and treatment planning; and counseling and testing.
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.
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).
Provider (or service provider)
The agency that provides direct services to clients (and their families) or the recipient. A provider may receive funds as a recipient (such as under RWHAP Parts C and D) or through a contractual relationship with a recipient funded directly by RWHAP. Also see subrecipient.
The degree to which a health or social service meets or exceeds established professional standards and user expectations.
Quality Assurance (QA)
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.
Quality Improvement (QI)
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.
An organization that receives RWHAP funds directly from. Recipients may provide direct services and/or may contract with Subrecipients for services. Replaces the term "Grantee." See also Recipient Subrecipient.
An organization that receives RWHAP funds directly from HRSA HAB and provides direct client services. Replaces the term “grantee-provider.”
Recipient of record (or recipient)
An organization receiving financial assistance directly from an HHS- awarding agency to carry out a project or program. A recipient also may be a recipient-provider if it provides direct services in addition to administering its grant. Replaces the term “grantee of record.”
The extent to which the demographics of the planning body's membership look like the demographics of the epidemic in the service area.
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.
The Part A planning council responsibility to assign Ryan White HIV/AIDS Program amounts or percentages to established priorities across specific service categories, geographic areas, populations, or subpopulations.
An inventory of the financial resources available in a jurisdiction to meet the HIV prevention, care, and treatment needs of its population as well as resource gaps. The inventory also details the CDC-funded high impact prevention services and the HRSA-funded core medical and support services.
Ryan White HIV/AIDS Program Services Report (RSR)
Data collection and reporting system for reporting information on programs and clients served (Client Level Data).
Schedule of Charges
Fees imposed on the RWHAP patient for services based on the patient’s annual gross income. A schedule of charges may take the form of a flat rate or a varying rate (e.g. sliding fee scale). The schedule of charges is how you know what amount of money to charge a patient. The schedule of charges applies to uninsured patients with incomes above 100% FPL, and may be applied to insured patients as determined by RWHAP recipients’ policies and procedures. When applied to insured patients, recipients should consider how their policy will be applied uniformly to all insured patients, rather than on a case-by-case basis.
Section 340B Drug Discount Program
A program administered by the HRSA's Office of Pharmacy Affairs that was 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 recipients of federal agencies.
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.)
HIV prevention and care services for persons at risk for HIV and PLWH that do not exist in the jurisdiction.
Demographic (e.g. race, age, gender identity, sex) and socioeconomic data (e.g. income, education, health insurance status) characteristics of individuals and communities. Also known as: SES, demographic data.
Special Projects of National Significance (SPNS)
The part of the Ryan White HIV/AIDS Program under Part F that funds demonstration and evaluation of innovative models of care delivery for hard-to-reach populations.
Statewide Coordinated Statement of Need (SCSN)
The process of identifying the needs of persons at risk for HIV infection and people living with HIV (those receiving care and those not receiving care); identifying current resources available to meet those needs, and determining what gaps in HIV prevention and care services exist. The SCSN is a culminating report which consists of information gathered through needs assessments conducted by three separate entities: RWHAP Part A Recipients, RWHAP Part B Recipients, and CDC funded recipients. Required component of the Integrated HIV Prevention and Care Plan.
The legal entity that receives Ryan White HIV/AIDS Program funds from a recipient and is accountable to the recipient for the use of the funds provided. Subrecipients may provide direct client services or administrative services directly to a recipient. Subrecipient replaces the term "Provider (or service provider)."
Federal agency within HHS that administers programs in substance abuse and mental health.
Services needed to achieve medical outcomes that affect the HIV-related clinical status of a person living with HIV/AIDS. Recipient/sub-recipient expenditures are limited to core medical services, support services, and administrative expenses.
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).
A report providing information on the number of reported cases of a disease such as AIDS, nationally and for specific sub-populations.
A population to be reached through some action or intervention; may refer to groups with specific demographic or geographic characteristics.
Technical Assistance (TA)
The delivery of practical program and technical support to the Ryan White community. TA is to assist recipients/sub-recipients, planning bodies, and affected communities in designing, implementing, and evaluating Ryan White-supported planning and primary care service delivery systems.
Transitional Grant Area (TGA)
Geographic areas highly-impacted by HIV/AIDS that are eligible to receive Ryan White HIV/AIDS Program Part A funds To be an eligible TGA, an area must have reported at least 1,000 but fewer than 2,000 new AIDS cases in the most recent 5 years and a population of at least 50,000. See also Eligible Metropolitan Area, EMA.
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.
The unmet need for primary health services among individuals who know their HIV status but are not receiving primary health care.
Usual, customary, and reasonable, as in services for which there is a usual, customary, and reasonable fee associated. Such services are found on a fee schedule.
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.
Recipients who do not impose a charge or accept reimbursement from any third party
payor are eligible to request an imposition of charges waiver. This is not common. Organizations that receive funding from RWHAP and other Federal funding sources (i.e., facilities operated directly by the Indian Health Service or by Tribes through a contract with the Indian Health Service, Community Health Centers) must follow the requirements imposed by each Federal program. To the extent that services under the RWHAP are provided and attributed to the RWHAP, RWHAP statutory requirements on imposition of charges must be followed.
XML (EXtensible Markup Language)
A standard, simple, and widely adopted method of formatting text and data so that it can be exchanged across all of the different computer platforms, languages, and applications.