Chapter 1. Making the Commitment
What is the CARE Act?
How are PLWH Important to Making the CARE Act Work?
What is Expected of Members of Local Planning Bodies?

This chapter provides important information about the CARE Act and how this Federal program directs money to your community to provide HIV health care services. After you have read this chapter, you may have enough information to decide if you can commit to participating on your local planning body.

Are you ready to make the commitment to become involved with your planning body?

The following questions may help you decide if you are ready.

This chapter is divided into three main parts:

I.  What is the CARE Act?

Read this part to learn about the CARE Act and important aspects of its history, and how the HRSA HIV/AIDS Bureau is organized to administer the CARE Act.  Look here for information on:

• The Different Parts of the CARE Act
• Guiding Principles for CARE Act Programs
• HRSA HIV/AIDS Bureau (HAB) Organizational Structure

II.  How are PLWH Important to Making the CARE Act Work?

Read this part to learn what the CARE Act requires regarding the involvement and participation of persons living with HIV (PLWH)— and learn ways that PLWH can make an important contribution. Look here for information on:

• Legislative Provisions for the Involvement of PLWH
• Why PLWH are Important to Planning Bodies

III.  What is Expected of Members of Planning Bodies?
Read this part to learn what is expected of planning body members.  This part explains specific requirements to ensure that members can represent the needs and views of others in their community. Look here for information on:

• Attendance Policies
• Representation and Reflectiveness of Your Community
• Conflict of Interest Requirements

The year that Ryan died, the U.S. Congress passed the Ryan White CARE Act.  This created the first major program designed specifically to enhance the quality and availability of health care services for persons living with HIV disease (PLWH).  The law was reauthorized (or renewed) for five years in 1996, and then again in 2000.  Congress amends or changes the CARE Act during reauthorization to set broad guidelines or create new priorities for the program.  Each year, the Congress appropriates, or determines, a specific amount of money to support the various purposes of the CARE Act.  In fiscal year 2002, Congress appropriated $1.9 billion to support HIV health care and supportive services through the CARE Act.

The CARE Act is the only program specifically designed to provide health and support services to PLWH.  However, it is not the major source of funding for HIV health care services in the United States.  Medicare and Medicaid are two federally-funded programs that pay for more health care for PLWH than the CARE Act.  Due to eligibility rules that determine who can get Medicaid or Medicare, PLWH usually do not qualify, unless they have advanced HIV disease or AIDS. 

Most people currently infected by HIV are poor, minorities or groups that have been historically underserved by the health care system.  HIV disease often leads to poverty due to costly health care or loss of the ability to work and retain health insurance coverage.

The CARE Act provides services to PLWH who do not qualify for Medicaid, Medicare, or private health insurance, or who have health insurance that does not cover all of the services they need.  Individuals most likely to use CARE Act services are those with no source of funds for treatment or medications, as well as those with Medicaid and private insurance whose care needs are not covered by their insurance. The CARE Act is called the “payer of last resort” because it pays for and fills gaps in care not covered by other resources.

CARE Act services are intended to reduce the use of more costly inpatient care by providing medical care that prevents the need for hospitalizations, increase access to care for underserved populations, and improve quality of life for those living with HIV disease.  The CARE Act does this by funding local and State programs that provide primary medical care and support services, access to drug therapies, health care provider training, and technical assistance for funded programs. Significant local and State control of HIV health care planning and service delivery is conducted under the CARE Act.  As a result, many innovative and practical approaches to the delivery of health care for persons living with HIV disease have been achieved.

The Different Parts of the CARE Act
Guiding Principles for CARE Act Programs
HIV/AIDS Bureau (HAB) Organizational Structure

How are PLWH Important to Making the CARE Act Work? TOP
Since the beginning of the HIV epidemic in the United States, PLWH have provided critical leadership that has propelled society and political leaders to respond.  They also have played an essential role in developing more accessible and culturally appropriate ways to provide health care and support services.  PLWH have helped strengthen HIV service systems, often working in partnership with providers, community-based agencies and local grantees.

Persons living with HIV disease are best able to describe their needs and design or provide feedback about HIV services.  Since the establishment of the CARE Act, the involvement of PLWH has been critical.  Thousands of PLWH have served on planning bodies around the country and held key leadership roles in advising the Federal government on how to best ensure that quality HIV primary care and support services are provided.  Many PLWH have served as planning body chairpersons, members or staff, grant administrators, contract monitors and CARE Act program officials at the Federal, State or local level.  HAB often has convened groups of consumers to discuss their concerns, which often led to new program policies or guidelines.

The CARE Act Amendments of 2000 strengthened Title I requirements related to the involvement and active participation of persons living with HIV disease.  The following Title I changes enhance the participation of PLWH.

• Increased the percentage of planning council members that must be PLWH from 25 percent to 33 percent.
• Added a new planning council membership category to require that a representative of formerly incarcerated PLWH serve on each council.
• Required that PLWH reflect the demographics of the local epidemic, so that those participating on planning councils more closely resemble the age, race/ethnicity, and gender of groups affected by the epidemic in each community.
• Limited PLWH alignments (formerly referred to as "affiliations") with funded providers, in order to increase independent judgments about funding decisions and reduce conflicts of interest in decision making.

Persons living with HIV disease are essential partners in program planning because they bring a consumer perspective to the process.  As users of services, they provide a practical perspective on their design and quality.  They can identify barriers to services from a client’s perspective and can help planning bodies and providers more effectively reach and serve the community, especially individuals who are racial/ethnic minorities, men who have sex with men, women, injection drug users, formerly incarcerated individuals, or others who belong to a group that has been underserved by our health care system.  Creative and effective solutions to service needs and problems are far more likely when planning bodies obtain input from multiple sources, including PLWH, representatives of public agencies, and staff of AIDS services organizations or other community-based organizations.

Section 2602(b)(2) identifies the groups that must be represented on the planning council.  Among them are representatives of “affected communities, including people with HIV disease and historically underserved groups and subpopulations;” and “individuals who formerly were Federal, State, or local prisoners, were released from the custody of the penal system during the preceding 3 years, and had HIV disease as of the date on which the individuals were so released.”

Section 2602(b)(5)(C) requires that “Not less than 33 percent of the council shall be individuals who “are receiving HIV-related services pursuant to a grant under” [Title I]; individuals are “considered to be receiving such services if the individual is a parent of, or a caregiver for, a minor child who is receiving such services."

PLWH on the planning council shall not be “officers, employees or consultants to any entity” receiving Title I funds and “do not represent any such entity.” PLWH on the planning council shall also “reflect the demographics of the population of individuals with HIV disease” in the eligible metropolitan area (EMA).

The last provision means that in addition to the planning council as a whole being reflective of the affected population in the eligible metropolitan area (EMA), consumer membership must also reflect the racial/ethnic, age, and gender demographics of the HIV/AIDS population. The formerly incarcerated were added as a planning council membership category in 2000.  The member can be a formerly incarcerated person living with HIV/AIDS or a representative of this population.

Title II.  Section 2613(c)(2)(D) extends the expectation that consortia will conduct planning that involves similar kinds of activities and individuals as described in Section 2602(b)(2) (cited above).

Sections 2617(b)(5) and (6) require Title II grantees to periodically convene a meeting of individuals with HIV disease and engage in a public advisory planning process with entities as described in Section 2602(b)(2)3 (cited above).

Why PLWH are Important to Planning Bodies and the Decisions They Make
Persons living with HIV disease make important contributions as participants in planning councils, Title II Statewide advisory groups and consortia, AIDS Drug Assistance Programs and other advisory bodies.  PLWH also serve as staff and board members of grantee and provider agencies.  Around the country, many PLWH direct and serve on the boards of AIDS services organizations, serve as senior staff of grantee agencies, grant reviewers on objective review committees, and participate in advisory bodies. 

For agencies that do not have senior staff who are PLWH, hiring and retaining PLWH as employees, managers or as board members could help ensure that services are appropriate.  This type of participation provides many of the same benefits as involving PLWH on planning and decision making bodies.

Participation of PLWH is important from the perspective of persons living with HIV disease themselves.  The late Kiyoshi Kuromiya, founder of the organization Critical Path and a past member of the Philadelphia planning council, explained the opportunities for and importance of involving PLWH:

“For the first time in history, a community of patients and their advocates have been given a voice in the Federal processes that determine what services are appropriate and needed. It is vital for us all that persons with HIV/AIDS get involved locally and nationally in this process, otherwise our seats at the table will disappear from lack of participation.”

Kiyoshi described PLWH as having critical two-way roles in the planning process: they must bring community issues to the table and bring treatment, research, and care issues to their communities.  While becoming involved in the process might seem “time-consuming and even onerous,” it can yield important results in terms of improved services and access to services.  Kiyoshi also stressed the need for the involvement of a new generation of PLWH:

 “Our ranks are now very much depleted by death and burnout, and we need to stress the importance of participation by a new generation, even more diverse than the last, of patient activists and advocates. This life and death struggle is only empowering if you are part of it.”

III. What is Expected of Members of Planning Bodies? TOP
The role of your planning body is to examine the HIV epidemic in your community and plan for needed HIV health care services.  Planning bodies determine service priorities and vote on which types of services get funded—which means that members have a real and tangible impact on services in their community.  PLWH are critical participants in this planning process.  Therefore, if you decide to join your local planning body, you should know that certain things are expected of you.

First, your community needs and expects you to do the best job you can to represent your community.  This means that you should talk to others in your community to understand their views and you should do your best to learn about issues that are taking place in your community.  You must respect and try to understand the perspectives of various groups.  You also must attend many meetings, some of which may be long, and the information presented may be very complex.  Often meetings will take place in the evenings, at government offices or community centers.  You must be willing to express your opinion, sometimes defend your position and frequently support a position by voting, either publicly or by secret ballot.  Although a record of the meeting may be available, you will probably need to take detailed notes for your use in future meetings or other activities.

Participants in planning processes need to be aware of the rules and policies that govern how meetings are run and how decisions are made.  It is useful for CARE Act planners to understand how health care is funded by State and Federal sources, how to use data, and how to read budget documents.  This digest presents basic information on some of these issues, but planning bodies and national AIDS organizations also can provide training resources to enhance your skills.

Because of the importance of a few select issues, your planning body may have developed specific policies (or they may be required to implement specific policies of HAB/DSS) regarding:

• Attendance
• Representation and Reflectiveness of your Community
• Conflict of Interest Requirements

Attendance Policies. There is no single national policy on planning body members' attendance at meetings.  There is a strong belief, however, that persons who commit to serve on their planning body must take their obligation seriously and attend regularly scheduled meetings.  Many planning bodies have rules that require the dismissal of members who have unexcused absences for several consecutive meetings.

Certainly, all people have events in their personal life that they cannot anticipate or control.  PLWH also must contend with illness, which may be a barrier to attending all meetings.  Therefore, absences are to be expected—and it is okay to miss a meeting. hat is not okay, however, is to become a member of your planning body if you know that you have too many other commitments to participate fully.  For every meeting that you miss, the representation of PLWH is weakened.  It is important to:

• Candidly discuss with your planning body leadership any regular appointments that might conflict with attending planning body and committee meetings.
• Inform planning body staff as early as possible of any emergency that might take you away from the meeting and request an excused absence.
• Request alternative methods of participating in meetings, such as attending by teleconference or sending a proxy, if that is allowed by bylaws.

If you must miss a meeting, be sure to request minutes (or ask someone to take notes for you) and review them carefully before the next meeting.  This way, you will be informed and other members will not feel that their time is being wasted by reviewing issues that already were discussed.

Representation and Reflectiveness of Your Community. Planning body members must constantly challenge themselves and ask, “Am I giving the views of all members of my community or am I only representing myself?”  Persons living with HIV disease have a difficult task—they must speak honestly and express their opinions, but they also must strive to make sure that their input and participation support more than their personal interests.

Representation means that PLWH who are on planning bodies should always try to convey the views of all subgroups or subpopulations of PLWH.  For example, an openly gay African-American man may best be able to speak from his personal experience and those of other gay, African-American men.  His experience may be different than that of other groups, such as Latinas, white transgendered individuals, or youth.  While it is not reasonable to expect him (or any planning body member) to consult with every potential subpopulation in his community, it is important that he acknowledge that his experience is not the only one.  PLWH should be aware of and able to communicate and balance the broad range of views and needs of persons living with HIV disease.

The reflectiveness concept is based on the idea that the planning body will best represent the diverse PLWH community if its membership looks like the community.  For example, if a quarter of PLWH in the community are under age 25, then the planning body’s PLWH membership should—roughly speaking—be 25 percent PLWH under age 25.  Having a planning body that is reflective of the community does not reduce the need for each member to try to represent the diverse views of community members, including those not currently in care. By addressing both the representativeness of individual members and the reflectiveness of the planning body as a whole, planning body decisions can more accurately respond to the needs of all members of the community.

Conflict of Interest Requirements. Conflict of interest is defined by HAB as an actual or perceived interest in an action that will result—or has the appearance of resulting—in personal, organizational, or professional gain.  Conflict of interest occurs when a planning council member has a monetary, personal, or professional interest in a planning council decision or vote. In other words, members should not be involved in making decisions about organizations that they work for.         

Title I legislative provisions on conflict of interest restrict planning council member involvement in the management of grant funds and the selection of particular entities as recipients of those funds.  In other words, planning council members should not be involved in making decisions about which organizations will receive Title I funding.  In addition, planning council membership requirements in the CARE Act Amendments of 2000 for representation by “non-aligned” consumer members require greater attention to conflict of interest.  PLWH who have a conflict of interest (for example, an employee of an organization that is funded by the specific CARE Act program) can still participate on the planning body and are encouraged to do so.  However, their participation is not applied toward meeting the legislative requirement that 33 percent of members must be non-aligned PLWH.  Members with conflicts must recuse (or remove) themselves from discussions and voting in which they have a conflict.

Although this legislative language does not apply to Title II planning bodies, HAB/DSS expects consortia and other Title II decision making bodies to be sensitive to conflicts and use similar strategies to manage and minimize conflicts of interest.

CARE Act planning body meetings are subject to “Sunshine Laws” in most States and are generally open to the public.  One way to find out if this is the right place for you to devote your energy is to attend a meeting or two and observe the process.  Ask questions of the members present, either during the public comment period or in private during the breaks or following the meeting.

If you are ready to make the commitment, Chapter 2 will tell you more about what is involved.  Alternatively, you may wish to consider other ways to get involved with CARE Act programs, such as advisory committees and other activities described in Chapter 3.