- Email: [email protected]
Interdisciplinary Collaboration: NAPWA: Informing, Educating, and Empowering People Living with HIV and AIDS
INTERDISCIPLIN ARY COLLABORA TION
NAPWA: Inforl11ing, Educating, and El11povvering People Living vvith HIV and AIDS Debra S. Weintraub
Pharmacists have long been fIxtures in communities small and large, and have come to be among the most respected professionals, placing high in the annual CNNIUSA Todayl Gallup Poll! year after year. We all know pharmacists who hold leadership positions in their communities--spearheading innovative pharmaceutical care programs, reaching out to the underserved, volunteering in free clinics, or working to advance local and national public policy. Others serve on community boards and committees, becoming part of the public infrastructure. Along with diplomacy, compromise, and commitment, public service often involves advocacy and education. Serving as an advocate (a person who speaks or writes in support or defense of a person, cause, etc.) can be one of the most personally and professionally rewarding activities in which one can engage. The National Association of People with AIDS (NAPWA) is an advocacy organization that reaches out to legislators on behalf of patients who may not have the ability to speak for themselves. HIVI AIDS affects people from all walks of life--men, women, children, young, and
Vol. 41, No.3
May/June 2001
old. The disease knows no boundaries with respect to financial status, and it has become a global medical and social problem. In the earliest years of the pandemic, however, AIDS was seen as a minority disease. This view inspired a lack of understanding by the public about the far-reaching effects of the disease. Consequently, the need for a particularly vigorous or different kind of advocacy set the stage for the formation of HIVI AIDS advocacy groups. As researchers work to find new medications and other methods to combat this ultimately lethal virus, individuals have banded together to continue focusing public attention on the HIV/AIDS cause, and to counter the false sense of complacency that has arisen as a result of advances in AIDS therapeutics and the "compassion fatigue" some may be experiencing after the now decades-long battle with the disease. AIDS service organizations (AS Os) have sprung up across America and the world to bring HIV -related services, education, and advocacy into the spotlight. These organizations have formed around a number of demographic variables--location,
gender, sexual orientation, and ethnicity, to name a few. Some ASOs are local or regional, focusing on the specific needs of the communities they serve, while others are national in scope and have advocacy and education as their focus.
The National Association of People with AIDS NAPWA was founded in 1983 by members of the Patient Advisory Committee of the Second National AIDS Forum. For 4 years, NAPWA existed as a loosely affiliated network of people with AIDS (PWAs) active in local coalitions (PWA Coalition of New York; Being Alive Los Angeles; Lifelink in Washington, D.C.; the PWA Coalition of Dallas; and others). When the need for greater structure in the national organization became obvious, NAPWA was incorporated in Washington, D.C., in 1987. The association's overall intent was and is to give PWAs a voice at the center of power. NAPWA's stated mission is to advocate on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS.
NAPWA Serves People NAPWA has been a leading force in lobbying Congress for health care dollars directed toward HIV therapy and prevention, raising their voice over the years in support of the Ryan White CARE Act, National Institutes of Health research funding, Centers for Disease
Control and Prevention programs focusing on prevention, and other successful initiatives. Education is a major focus of NAPWA, including community development and training programs (see sidebar on page 472) and materials that enhance access to care and describe HIV-related advances in medicine. NAPWA's programs and publications give PWAs the tools they need to take charge of their care. For example, a nationally recognized publication, Your Passport to Managed Care, 2 developed in partnership with the Health Resources Services Administration, includes a medication calendar and personal diary, as well as advice on getting the care needed from managed care companies. A print version is available in both English and Spanish. Making Your Treatments Workfor You: New Options for Simpler Regimens 3 is a
27 -page publication meant to inform PWAs about choices that can improve adherence to complex multidrug regimens. Pharmacists are regularly recommended to readers as a community resource to help PWAs develop a strong adherence program, and this publication (available in English and Spanish) serves as a model tool for assisting patients in managing their drug therapy. NAPWA has developed other outstanding medication and health care-related materials, all of which are available via their Web site (www. napwa.org). Sample titles include Making Medicaid Managed Care Wor0 (a joint project ofNAPWA and The Henry 1. Kaiser Family Foundation);
Journal of the American Pharmaceutical Association
471
INTERDISCIPLINARY COLLABORATION
Do You Know Your Options?: A Guide to Antiretroviral Therapies5; and Your Guide to Understanding Lipodystrophy Syndrome. 6 The publications are written for patients in easyto-understand language, and most provide the definitions of key words, which appear in bold type. The publications also inform patients about their rights and how to be more effective and educated consumers. Over the years, NAPWA has been a strong and consistent national leader for PWAs, ensuring that the voices of PWAs are always heard when decisions affecting their lives are being made. By remaining committed to the premise that people with HIV and AIDS must not be silent victims or passive patients as the disease challenges their lives, NAPWA has had a potent impact on the nation's HIV/AIDS policies. The lifeblood of most notfor-profit organizations is generous financial contributions from corporations, governmental agencies, and individual contributors. NAPWA is no different, and its board members must constantly "beat the bushes" to bring in new funding. NAPWA's Development Committee continues to work with board members and development staff to increase global awareness ofNAPWA and identify potential donors for N APW A's many programs, initiatives, and activities.
Opportunities for Pharmacists Pharmacists interested in becoming involved with NAPWA have a number of
472
opportunities available to them. By contacting NAPWA, pharmacists can explore ways to • Obtain the wide variety of educational materials developed by NAPWA for use in their practice. • Contribute as an author or editor to the various newsletters and pamphlets the organization produces. • Participate in community education by hosting an event or by volunteering to be part of a HIVI AIDS community speakers bureau. • Learn about partnership opportunities with local organizations (ASOs and health departments) to conduct HIV screenings. • Advocate for local, state, and national support for research and community assistance through grass-roots lobbying efforts.
A Final Word on Involvement Pharmacists are in a unique position to work with NAPWA and other advocacy organizations. NAPWA represents a valuable resource for pharmacists who would like to assist the HIVIAIDS population in their communities. By visibly supporting HIVI AIDS advocacy as well as other health-related causes in their communities, pharmacists can provide more to their patients and neighbors than ever before. Making a difference in someone else's life requires more than just serving them from the pharmacy. Pharmacists hoping to truly improve people's lives must get out and find what service opportunities are available in their communities. The
Journal of the American Phannaceutical Association
National Association of People with AIDS Business hours: 9:00 am to 6:00 pm Monday through Friday. Closed weekends and federal holidays. Telephone: 202-898-0414 Fax: 202-898-0435 Address: NAPWA, 1413 K Street, NW, 7th Floor, Washington, DC 20005 Web address: www.napwa.org Executive Director: Terje Anderson Major Programs • Regional training programs across the United States to help communities build leadership •
Staying Alive: A National Survival Training for People Living with HIV
•
Annual Ryan White National Youth Conference on HIV and AIDS
•
National HIV Testing Day Campaign
•
Information and referral
•
Medical Alert, a free quarterly treatment newsletter
•
ADVONET, Grassroots Advocacy Network
•
AIDSWatch, annual federal education and advocacy initiative
•
Active Voice+, a free quarterly policy newsletter
•
My Actions!, online advocacy reporting tool
•
The AIDS Watcher, NAPWA's monthly policy briefing newsletter
•
Interactive Web site resources for identifying and contacting federal elected officials
•
Technical assistance to nonprofit groups
rewards to be gained from voluntarily contributing time and expertise include an enhanced sense of community and personal and professional successes. If you volunteer, you will not regret your decision to say, "Okay, why not?" Debra S. Weintraub, PharmD, MPA, FAPhA is president, Veracis, LLC, Gaithersburg, Md. In 1998 she became the first pharmacist-member of the NAPWA Board of Directors. She currently serves as the organization 's treasurer and ts co-chair of its Development Committee. She can be reached by e-mail at dweintraub @prodigy.net.
References 1. Honesty/Ethics in Professions. Princeton, NJ: The Gallup Organization; November 2000. Available at: www. gallup.com/poll/indicates/indh nsty_ethics.asp. Accessed November 13, 2000.
2
National Association of People with AIDS. Your Passport to Managed Care. Washington, DC: NAPWA; 1999.
3
National Association of People with AIDS. Making Your Treatments Work for You: New Options for Simpler Regiments. Washington, DC: NAPWA; November 1999.
4
National Association of People with AIDS. Making Medicaid Managed Care Work: An Action Plan for People Living with HIV. 2nd ed. Washington, DC: NAPWA. May 2000.
5
National Association of People with AIDS. Do You Know Your Options? A Guide to Antiretroviral Therapies. Second ed. Washington, DC: NAPWA; August 1997.
6. National Association of People with AIDS. Your Guide to Understanding Lipodystrophy Syndrome. Washington, DC. 2000.
May/June 2001
Vol. 41, No.3
NAPWA: Inforl11ing, Educating, and El11povvering People Living vvith HIV and AIDS Debra S. Weintraub
Pharmacists have long been fIxtures in communities small and large, and have come to be among the most respected professionals, placing high in the annual CNNIUSA Todayl Gallup Poll! year after year. We all know pharmacists who hold leadership positions in their communities--spearheading innovative pharmaceutical care programs, reaching out to the underserved, volunteering in free clinics, or working to advance local and national public policy. Others serve on community boards and committees, becoming part of the public infrastructure. Along with diplomacy, compromise, and commitment, public service often involves advocacy and education. Serving as an advocate (a person who speaks or writes in support or defense of a person, cause, etc.) can be one of the most personally and professionally rewarding activities in which one can engage. The National Association of People with AIDS (NAPWA) is an advocacy organization that reaches out to legislators on behalf of patients who may not have the ability to speak for themselves. HIVI AIDS affects people from all walks of life--men, women, children, young, and
Vol. 41, No.3
May/June 2001
old. The disease knows no boundaries with respect to financial status, and it has become a global medical and social problem. In the earliest years of the pandemic, however, AIDS was seen as a minority disease. This view inspired a lack of understanding by the public about the far-reaching effects of the disease. Consequently, the need for a particularly vigorous or different kind of advocacy set the stage for the formation of HIVI AIDS advocacy groups. As researchers work to find new medications and other methods to combat this ultimately lethal virus, individuals have banded together to continue focusing public attention on the HIV/AIDS cause, and to counter the false sense of complacency that has arisen as a result of advances in AIDS therapeutics and the "compassion fatigue" some may be experiencing after the now decades-long battle with the disease. AIDS service organizations (AS Os) have sprung up across America and the world to bring HIV -related services, education, and advocacy into the spotlight. These organizations have formed around a number of demographic variables--location,
gender, sexual orientation, and ethnicity, to name a few. Some ASOs are local or regional, focusing on the specific needs of the communities they serve, while others are national in scope and have advocacy and education as their focus.
The National Association of People with AIDS NAPWA was founded in 1983 by members of the Patient Advisory Committee of the Second National AIDS Forum. For 4 years, NAPWA existed as a loosely affiliated network of people with AIDS (PWAs) active in local coalitions (PWA Coalition of New York; Being Alive Los Angeles; Lifelink in Washington, D.C.; the PWA Coalition of Dallas; and others). When the need for greater structure in the national organization became obvious, NAPWA was incorporated in Washington, D.C., in 1987. The association's overall intent was and is to give PWAs a voice at the center of power. NAPWA's stated mission is to advocate on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS.
NAPWA Serves People NAPWA has been a leading force in lobbying Congress for health care dollars directed toward HIV therapy and prevention, raising their voice over the years in support of the Ryan White CARE Act, National Institutes of Health research funding, Centers for Disease
Control and Prevention programs focusing on prevention, and other successful initiatives. Education is a major focus of NAPWA, including community development and training programs (see sidebar on page 472) and materials that enhance access to care and describe HIV-related advances in medicine. NAPWA's programs and publications give PWAs the tools they need to take charge of their care. For example, a nationally recognized publication, Your Passport to Managed Care, 2 developed in partnership with the Health Resources Services Administration, includes a medication calendar and personal diary, as well as advice on getting the care needed from managed care companies. A print version is available in both English and Spanish. Making Your Treatments Workfor You: New Options for Simpler Regimens 3 is a
27 -page publication meant to inform PWAs about choices that can improve adherence to complex multidrug regimens. Pharmacists are regularly recommended to readers as a community resource to help PWAs develop a strong adherence program, and this publication (available in English and Spanish) serves as a model tool for assisting patients in managing their drug therapy. NAPWA has developed other outstanding medication and health care-related materials, all of which are available via their Web site (www. napwa.org). Sample titles include Making Medicaid Managed Care Wor0 (a joint project ofNAPWA and The Henry 1. Kaiser Family Foundation);
Journal of the American Pharmaceutical Association
471
INTERDISCIPLINARY COLLABORATION
Do You Know Your Options?: A Guide to Antiretroviral Therapies5; and Your Guide to Understanding Lipodystrophy Syndrome. 6 The publications are written for patients in easyto-understand language, and most provide the definitions of key words, which appear in bold type. The publications also inform patients about their rights and how to be more effective and educated consumers. Over the years, NAPWA has been a strong and consistent national leader for PWAs, ensuring that the voices of PWAs are always heard when decisions affecting their lives are being made. By remaining committed to the premise that people with HIV and AIDS must not be silent victims or passive patients as the disease challenges their lives, NAPWA has had a potent impact on the nation's HIV/AIDS policies. The lifeblood of most notfor-profit organizations is generous financial contributions from corporations, governmental agencies, and individual contributors. NAPWA is no different, and its board members must constantly "beat the bushes" to bring in new funding. NAPWA's Development Committee continues to work with board members and development staff to increase global awareness ofNAPWA and identify potential donors for N APW A's many programs, initiatives, and activities.
Opportunities for Pharmacists Pharmacists interested in becoming involved with NAPWA have a number of
472
opportunities available to them. By contacting NAPWA, pharmacists can explore ways to • Obtain the wide variety of educational materials developed by NAPWA for use in their practice. • Contribute as an author or editor to the various newsletters and pamphlets the organization produces. • Participate in community education by hosting an event or by volunteering to be part of a HIVI AIDS community speakers bureau. • Learn about partnership opportunities with local organizations (ASOs and health departments) to conduct HIV screenings. • Advocate for local, state, and national support for research and community assistance through grass-roots lobbying efforts.
A Final Word on Involvement Pharmacists are in a unique position to work with NAPWA and other advocacy organizations. NAPWA represents a valuable resource for pharmacists who would like to assist the HIVIAIDS population in their communities. By visibly supporting HIVI AIDS advocacy as well as other health-related causes in their communities, pharmacists can provide more to their patients and neighbors than ever before. Making a difference in someone else's life requires more than just serving them from the pharmacy. Pharmacists hoping to truly improve people's lives must get out and find what service opportunities are available in their communities. The
Journal of the American Phannaceutical Association
National Association of People with AIDS Business hours: 9:00 am to 6:00 pm Monday through Friday. Closed weekends and federal holidays. Telephone: 202-898-0414 Fax: 202-898-0435 Address: NAPWA, 1413 K Street, NW, 7th Floor, Washington, DC 20005 Web address: www.napwa.org Executive Director: Terje Anderson Major Programs • Regional training programs across the United States to help communities build leadership •
Staying Alive: A National Survival Training for People Living with HIV
•
Annual Ryan White National Youth Conference on HIV and AIDS
•
National HIV Testing Day Campaign
•
Information and referral
•
Medical Alert, a free quarterly treatment newsletter
•
ADVONET, Grassroots Advocacy Network
•
AIDSWatch, annual federal education and advocacy initiative
•
Active Voice+, a free quarterly policy newsletter
•
My Actions!, online advocacy reporting tool
•
The AIDS Watcher, NAPWA's monthly policy briefing newsletter
•
Interactive Web site resources for identifying and contacting federal elected officials
•
Technical assistance to nonprofit groups
rewards to be gained from voluntarily contributing time and expertise include an enhanced sense of community and personal and professional successes. If you volunteer, you will not regret your decision to say, "Okay, why not?" Debra S. Weintraub, PharmD, MPA, FAPhA is president, Veracis, LLC, Gaithersburg, Md. In 1998 she became the first pharmacist-member of the NAPWA Board of Directors. She currently serves as the organization 's treasurer and ts co-chair of its Development Committee. She can be reached by e-mail at dweintraub @prodigy.net.
References 1. Honesty/Ethics in Professions. Princeton, NJ: The Gallup Organization; November 2000. Available at: www. gallup.com/poll/indicates/indh nsty_ethics.asp. Accessed November 13, 2000.
2
National Association of People with AIDS. Your Passport to Managed Care. Washington, DC: NAPWA; 1999.
3
National Association of People with AIDS. Making Your Treatments Work for You: New Options for Simpler Regiments. Washington, DC: NAPWA; November 1999.
4
National Association of People with AIDS. Making Medicaid Managed Care Work: An Action Plan for People Living with HIV. 2nd ed. Washington, DC: NAPWA. May 2000.
5
National Association of People with AIDS. Do You Know Your Options? A Guide to Antiretroviral Therapies. Second ed. Washington, DC: NAPWA; August 1997.
6. National Association of People with AIDS. Your Guide to Understanding Lipodystrophy Syndrome. Washington, DC. 2000.
May/June 2001
Vol. 41, No.3