The ADAP Advocacy Association (aaa+) is a national 501(c)(3) nonprofit organization incorporated in the District of Columbia to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS. aaa+ works with advocates, community, health care, government,  patients, pharmaceutical companies and other stakeholders to assure that access to services recognize and afford persons living with HIV/AIDS to enjoy a healthy life.

 

The following value statements are the foundational ideals under which aaa+ operates.  aaa+ consistently strives to achieve them, while encouraging its supporters to do the same.

 

That the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.

That HIV/AIDS advocates should welcome the opportunity to join the skills, experience and voices with others on issues of disability and access to adequate healthcare for all Americans.

That advocacy efforts targeted to our federal government shall always carry the needed messages applicable at the state and local level.

That messages and information shall be in accessible formats understandable to – and also deliverable by – grassroots advocates in any setting.

 

aaa+ is governed by a dedicated, diverse volunteer board of directors.  The organization now benefits from the combined experience of six HIV-positive members, two ADAP recipients (plus two former ADAP recipients), one physician, one attorney, one religious leader, eight influential AIDS community activists and leaders, and two lifelong disability rights champions.

CLICK HERE to learn more about the Board Members.

 

Background

AIDS Drug Assistance Programs (ADAPs), funded under Title II/Part B of the Ryan White Comprehensive AIDS Resources Emergency Act, has become, for hundreds of thousands of individuals, the primary and initial source of HIV medical care and treatment in the United States.  However, while ADAP’s central importance to the fragmented HIV medical care infrastructure continues to grow, public support for substantial funding increases for the program have faded as HIV itself becomes less of a public health concern; and, also as federal spending flirts with the billion dollar ceiling that has historically limited health programs funded through the domestic discretionary portion of the federal budget.  While the body of data supporting both the extraordinary medical achievements engendered by antiretroviral therapy and the nearly unprecedented cost effectiveness of providing that therapy (only by actively encouraging a relatively early death fro m AIDS could the same cost and prevention targets be met), advocacy for ADAP has dramatically shrunk from the vital efforts  established at both the federal and state levels initiated in 1996-2000, to the current ad hoc efforts by a wide variety of organizations, none of which have ADAP advocacy at the center of their mission.  Without this kind of structure:.

ADAP consumers are severely hampered in the development and enforcement of respected “need” estimates and ask numbers;

ADAP consumers have no communal identity from which to communicate on issues or events that could move appropriators, legislators or regulators to take additional responsibility for solving ADAP issues;

ADAP consumers have no unified funding base from which to administer briefings, meetings or even to pay for expenses for ADAP clients, physicians or other persons who might play a useful role in federal advocacy; and

There is no focused, coordinated, national leadership on this vital issue thus allowing numerous groups to advance their own ideas and insuring that the ADAP message is fragmented and less effective in advocacy and educational efforts.

Since the informal dissolution of the long established ADAP Working Group, the ADAP advocacy community has become increasingly hampered by these and related disabilities with predictable outcomes; e.g. the first year since 1996 with no increase in the federal ADAP budget, and three years of completely insufficient federal (and some state) funding increases.

 

Leading a Renewed Effort:

aaa+ provides a neutrally-operated infrastructure, which provides the base for newly vital ADAP advocacy efforts at the state and local level.  aaa+’s major constituent components includes:

A web-based multi-functional framework for all national ADAP advocacy:

A comprehensive library of resources defining the cost benefits of providing access to comprehensive HIV medical care and drugs;

A fully functional news-blog and RSS feed providing ready access to news stories affecting access to care nationally;

A comprehensive list of links to sites providing the latest news and data on HIV treatments;

A fully functional and transparent interactive feature permitting anyone to interact with Congress, Executive Branch or federal agencies on issues of importance to the ADAP community with expansion capabilities for the development of corresponding state list-serves and contact mechanisms;

Comprehensive information on the mechanisms of ADAP advocacy (fact sheets, how to primers, legislative function primers, non-profit regulation, etc.); and

An ability to provide precisely the menu of ADAP information and interactivity defined by an individual or organization.

A renewed foundation for federal ADAP advocacy, aaa+ is:

A 501(c)(3) tax-exempt, non-profit organization;

Administered by a neutral, funded entity;

Directed by a Board consisting of advocates with strong track records of success in leading and managing access to care efforts (7-9 leaders);

A strong capacity for involvement and input by a variety of national, regional and local advocates; and

A capacity to grow to include complementary efforts to administer state or local ADAP efforts;

 

Management and Administration:

Prior to filing its Article of Incorporation, aaa+ was managed by an “Organizing Committee” of seven to nine (7-9) individuals with proven skills in administration, advocacy, fundraising, medicine, and/or ADAP recipient – including Gary Rose (Jersey City, NJ 07302), John D. Kemp, Esq. (Washington, DC 20005), Joyce Turner Keller (Baton Rouge, LA 70814), Keita Simmons  (Stuart, FL 34997), Philip A. Haddad, MD (Shreveport, LA 71104), Rani G. Whitfield, MD (Baton Rouge, LA 70809) and William E. Arnold (Washington, DC 20009).  This Organizing Committee eventually was seated as the first Board of Directors after the organization was fully established on July 6, 2007.  It meets monthly, or as deemed appropriate, usually by conference call.

All management functions are provided by The Macsata-Kornegay Group, Inc.  The Organizing Committee engaged Brandon M. Macsata, Managing Partner as the CEO of the organization charged with all facets of its administration, funding, management and marketing.  Macsata previously served as Executive Director & CEO of the American Congress of Community Support & Employment Services, prior to going into private consulting.  Macsata has also been living with HIV/AIDS since March 2002 and is a former ADAP recipient.

The Macsata-Kornegay Group, Inc. is a professional consulting firm specializing in governmental and public affairs – including organizational grassroots development, communications and marketing.  In addition, they offer proven results in planning successful events and fundraising for political campaigns - including individual candidates, political action committees, trade associations and non-profits.

Disclaimer: The ADAP Advocacy Association (aaa+) has used the federal program's name, the AIDS Drug Assistance Program (ADAP) but has no connection to the federal program other than the use of its name, and our purpose to educate individuals about the availability of the federally funded program.