In Focus #16: July 2003

From the Executive Director …

Ellen LaPointe, Executive Director

Summer is here. It seems only yesterday that we were looking back at 2002, taking stock of our efforts, giving thanks to our supporters and developing the blueprint for our work in 2003. As I reflect on the advocacy issues we are confronting on behalf of people with HIV and AIDS, I am struck by the fact that so many of the battles we are fighting today are the same ones we have been fighting since the beginning, but with a twist.

Project Inform began its work in the mid-1980s, when approved treatments for people with HIV and AIDS did not even exist. We fought hard to ensure the establishment of rigorous but fair standards in the drug approval process, and for the creation of systems and programs to enable people who needed access to promising and experimental AIDS treatments to get them. We made sure that government leaders with other priorities were assertively and repeatedly shown that the needs of people with HIV warranted their attention, and more importantly, a sustained commitment to adequate funding and support. And we led a chorus of voices calling for continued efforts on the research front to identify a safe and effective cure.

Nearly 18 years later, we are fighting for the same things. While scientific and medical advances have led to the approval of many important treatments to combat HIV disease progression and related opportunistic infections—a positive development by any standard—we are still fighting daily battles to ensure that people can access them. We are a leading voice in broad coalition efforts to ensure that approved drugs are priced appropriately. As the epidemic continues to expand, reaching further and further into communities disproportionately affected by poverty and other significant barriers to adequate healthcare and treatment, Project Inform’s work to persuade government leaders with other priorities of the critical need for adequate funding and support for Medicaid, Advocates Form Medicaid Defense Group), the AIDS Drug Assistance Program and other key programs is as urgent as—and in some ways more urgent than—ever before.

History will tell whether the day will arrive when key leaders embrace the gravity of the AIDS crisis, and dedicate sufficient resources to ensure that people with HIV and AIDS have access to adequate care and treatment. Until that day arrives, Project Inform will continue our vigorous advocacy work in this and other key areas. Thank you for making it possible for us to do so.

Project Wise Assesses Needs of Women Living with HIV

Community input is key to a successful and sustainable program. A community needs assessment is a strategic process for garnering community input in the development of a program. This year, Project Wise, the women-specific program of Project Inform, is conducting its own needs assessment, the goal of which is to identify gaps, needs or barriers women living with HIV may have in accessing and using treatment information as well as accessing quality healthcare. It will also help Project Inform to clearly understand how to best serve the needs and concerns for women living with HIV and inform our future public policy and advocacy activities.

Throughout this process, we have been interviewing key staff from community-based agencies serving women living with HIV around the country, women living with HIV, Project Inform constituents, staff and volunteers. The survey contains questions about where women get their treatment information, challenges women may face in getting or understanding treatment information and medical issues that women living with HIV experience. Once all the interviews have been completed, the information will be reviewed and analyzed and a final report will be drafted. The results of the needs assessment will be used to update priorities and goals for Project Inform’s women’s program, Project Wise.

We hope that this process will not only strengthen the foundation for Project Wise but also help to amplify the voices of women living with HIV/AIDS. Keep your eyes and ears open for more news and updates as the process moves forward.

Nearly 100 Riders gathered at the start line for the Ron Wilmot Bike Ride on May 10 in Golden Gate Park. Thanks to hundreds of friends and supporters, volunteers and donors, Riders enjoyed beautiful weather, incredible prizes, plenty of food and collectively raised $78,273—a wonderful outcome in these economic times. Thank you one and all!

Corporate and Foundation Spotlight

The MAC AIDS Fund has supported Project Inform since 2000. The Fund’s first contribution came by way of sponsorship of our Los Angeles Evening of Hope gala and last year greatly expanded its investment in our work by making a $30,000 grant to support our Integrated Treatment Education Program.

“We are very appreciative of the efforts made by Project Inform to the HIV/AIDS community at large and consider this organization an appropriate and responsible recipient of funds made possible through the MAC AIDS Fund by fundraising initiatives such as the VIVA GLAM program developed for this purpose,” said Bruce Hunter, Executive Program Director for the Fund. “Project Inform embodies the very best principles of care and compassion that the MAC AIDS Fund seeks to support,” added Hunter.

The VIVA GLAM lipstick sales program was created by MAC in 1994 to serve as the primary fundraising tool of the MAC AIDS Fund. Project Inform gratefully acknowledges MAC and its retail partners, which have waived all administrative costs and profits so that every cent of the proceeds from VIVA GLAM lipsticks is directed to AIDS service organizations, like Project Inform. Thanks to that generous support, in less than nine short years the MAC AIDS Fund has raised over $30 million to help men, women and children affected by HIV/AIDS live healthier, longer and fuller lives.

PacifiCare has stepped up to provide a $5,000 grant to support Project Wise, our information and advocacy program for women. Founded in 1999, the PacifiCare Foundation, which is a private corporate foundation, receives its funding through profits generated by PacifiCare Health Systems and through voluntary contributions made by PacifiCare employees.

The Foundation has five formal areas of focus: senior programs; child/youth programs; health prevention/promotion programs; human/social services; and education. PacifiCare was also a sponsor of this year’s Ron Wilmot Bike Ride for Project Inform which was held on May 10.

Robert James Frascino AIDS Foundation

Robert James Frascino, MD

The Robert James Frascino AIDS Foundation is a not-for-profit charitable organization whose sole mission is to fund crucial services for men, women and children living with HIV and to raise awareness of the epidemic through advocacy and education. In 1996, Dr. Robert Frascino and Dr. Steven Natterstad, AIDS specialists and concert pianists, planted the seed for The Foundation when they performed a private AIDS benefit piano concert at their home in Los Altos, CA. Due to its overwhelming success, Frascino and Natterstad founded The Concerted Effort HIV/AIDS benefit concert series through which they, along with San Francisco Conservatory of Music Professor Dr. William Wellborn, have performed classical and popular piano concerts throughout California.

To date, these efforts have raised well over $600,000 for crucial HIV/AIDS services ranging from hospice care in Los Angeles, to AIDS education in the primary schools on the Mendocino Coast, to Global Strategies for HIV Prevention throughout the world. Project Inform was the recipient of a $10,000 grant from proceeds of last year’s concert and silent auction which were held at The Ozone Café on the campus of Silicon Graphics, Inc. (SGI) in Mountain View. This year’s event will be held on Sunday, November 23. For more information, visit www.concertedeffort.org.

Ride For A Cause in Tuscany, Italy

Cycle in style and combine serious luxury with serious fundraising in the rolling hills of northern Italy. This week-long Ride takes place October 12-18 and will be limited to 10 Riders, plus one coordinator and crew. Riders are asked to cover airfare, their portion of villa rental and then fundraise a suggested minimum of $2,500 to be split between Project Inform and AIDS Foundation Chicago. For more details, visit www.rfac.org.

Volunteers Make Invaluable Contributions

At the heart and soul of Project Inform are its volunteers and interns. Over 160 individuals make up this volunteer body and they play central roles in Project Inform’s efforts to bring vital information on the diagnosis and treatment of HIV disease to HIV-infected individuals, their caregivers and healthcare and service providers. The volunteers and interns are recruited from the community, representing the diversity of our constituency and have a passion and commitment to make a difference in the fight against HIV disease.

In 2002, volunteers and interns were active throughout the entire organization, supporting the work of all the departments. As shown on the chart below, office volunteers helped with various administrative work, including making and sending out packets and boxes of information, which made up over 27% of the total volunteer hours for the year; individuals provided voluntary support in Project Inform’s fundraising efforts, making up 13% of the yearly volunteer hours contributed; and, volunteers who staff Project Inform’s National HIV/AIDS Treatment Information Hotline contributed their time and efforts, accruing over 44% of the total volunteer hours for the year. In total, volunteers and interns gave over 12,000 hours of service to the organization, which equaled to 6 full-time staff positions. These dedicated individuals provided extraordinary work and support and enabled the organization to fulfill its mission.

Project Inform Active Volunteers (as of July 10, 2003)

Jane Achterkirchen Maria Aguirre Alvin Anderson Fabio Araujo Ruy Assumpcao Pamela Aubert Curtis Baker Ryan Ballou Stephen Becker Samuel Becker Judith Berkowitz Walter Beverly Jerry Bezaire Steven Black Larry Bragg Newton Butler Ed Byrne Bill Cagle Jesus Canchola Robert Canizales John Carr Will Carter Diane Cenko Noel Cervo Matt Chappell Frank Ching Abby Christopher Eric Chu Mark Cloutier Chris Coleman Ben Collins Molly Congdon David Costa Paul Couey Steve Coulter Skip Crawford Peter Cruise Dan Cusick Charles Davis Alicia Dithmart Jeff Doney Christopher Dudka Jim Estes Steve Eubanks Robert Fisk Bruce Fitting Stephen Follansbee Matt Fust Ben Gallo Al Gauthreaux

Jerry Gilardi Jonathan Goldman Andrea Gordon Laura Gowen Peter Grady Bridget Graham Michael Greene Jeff Gustavson Aron Gyuris Robert Hale Gerald Hall Meredith Harris Brandon Heiken Daniel Hernandez Henry Herrera Gerry Hill Markham Hirt David Jacobs Jarl Jensen Michael Jones, RN, BSN Kimberly Jordan Jerry Kangas Jude Kaye Charley Kearns Tom Kelley Jay Kerzner Amy Kindrick, MD, MPH Dorothy Kleffner Justin Lampe Mihail Lari Alejandra Lecaros Jane Levikow Steve Lew Thom Longino Terry Lupton Alejandro Magyaroff Karen Marek David Margolis Joseph Martinez Alison McBreen Jack McCarty Andrew Mead Lucho Merino Michael Merry Jami Miskie Aronnora Morgan Alan Morgenegg Jana Murphy Thomas O’Callaghan

Christopher Olsen Bjorn Olson Kundun Patel Ken Pearce Stephen Pelton Liliana Perry Brent Pogue Curtis Ponzi, Esq. David Rachleff David Randall Glen Reeder Alonzo Reese Rachel Rodriguez Kevin Roe Joe Rosenthal Ann-Marie Roy Jason Ruck Paula Runnals Raman Sarkis Mary & Leonard Schreiber Jack Shallow John Sigel Larry Smyle William Sprick Steve Sternfeld Ed Stone Samuel Storer Stephen Suacci David Swor Jasen Texeira Dave Thomson Annie Thornton Brian Thorstenson Ken Turner Gretchen Van Raalte, RN Telmo Vasquez Rick Vila Patricia Vito Peter Waterloo Jennifer Wendell Brian Whitford Jeff Wiggins Jessie Wofsy Katie Woods Christina Yang Kevin Yee Yan Ting Yu Arthur Zabala

 

If you would like more information about the myriad of volunteer and intern opportunities or are interested in becoming a part of this incredible volunteer body, please contact Mark Owens, Volunteer & Intern Services Manager, at 415-558-8669 x218.

What’s New? Discontinued

In an effort to streamline its publications, Project Inform has discontinued What’s New?, a monthly newsletter that summarized recent HIV treatment information and Project Inform program activities. We’ll be publishing In Focus on a more frequent basis for more general organizational information, and you can still count on us for late-breaking treatment information, action alerts and program updates. Just go to the home page and click on the “Hot Items” link.

Advocacy … Taking action

Advocates Form Medicaid Defense Group
In January, President Bush announced a Medicaid reform plan that would essentially provide a block grant to states, placing a cap on federal Medicaid spending, reducing both eligibility and benefits. Since 90 percent of children and more than half of all people living with AIDS rely on Medicaid to pay for their healthcare, the consequences of such a plan seemed grim. That’s when HIV advocates including Project Inform joined together to form the Medicaid Defense Group, an ad hoc coalition of organizations and individuals committed to fighting proposed harmful changes to Medicaid.

In just a few months, the Medicaid Defense Group has worked successfully with other Medicaid advocates to:

Remove a $95 billion/ten-year mandatory cut to Medicaid in the Federal Budget Resolution, contained in the House of Representatives’ version of the bill.Include $20 million temporary state fiscal relief in tax cut legislation, $10 million of which is provided directly to Medicaid programs through a temporary increase in the Federal Medical Assistance Percentage.Prevent the National Governors Association’s Medicaid Task Force from reaching a consensus on block granting Medicaid in exchange for more state control of the program. A bipartisan agreement from the NGA would have given House Republicans tremendous power to push ahead with the President’s proposal.

Get a joint letter from 48 Senators which opposes any capped federal funding for Medicaid. This letter sends a strong signal that any bill containing capped Medicaid funding will be very unlikely to pass the Senate.

If you would like to be part of the grassroots effort to protect and expand Medicaid, join Project Inform’s Treatment Action Network (TAN). You’ll receive email Alerts and updates about Medicaid and other important HIV/AIDS policy issues. To join TAN, go to www.projectinform.org/org/tanform.html, or send an email to TAN@projectinform.org with “subscribe” in the subject field. For more information about the Medicaid Defense Group, contact Lei Chou of AIDS Treatment Data Network at theaccessproject@aol.com.