In Focus: Spring 1997

Project Inform Welcomes

We would like to welcome Tom Downing as a member of the Project Inform Board of Directors. Tom is returning to our Board after a year’s hiatus. We are always excited about working with Tom who was a Marketing Executive with Pacific Bell. Donald Davis, M.D., of Atlanta, has been elected to the Project Inform National Board of Governors. Donald was instrumental in gaining funding for PI’s Immune Restoration Think Tank meeting held in Atlanta.

The “PI In Person” Program:

A Volunteer Makes a Difference; You Can Too!
At our San Francisco office, over 200 volunteers do much of the daily work that keeps PI effective and meeting your needs. Many of you outside the Bay Area, have asked what you can do to help. The Treatment Action Network’s advocacy activities and local support for our traveling Town Meeting program have been—and still are—areas where you can help.

Now a volunteer has come up with a new project. Will Pretty, a longtime supporter in Orange County, CA, travels frequently and recently began making visits to AIDS Service Organizations (ASOs) in cities he visits. Armed with the latest Project Inform information, Will has visited 14 ASOs in Hawaii, Southern California, Michigan and London, England. But Will doesn’t just drop off information. He makes appointments to speak with staff; for example, the Executive Director, a Treatment Educator or an Outreach Worker. Once there, he shows them the information and explains our treatment information and advocacy services and how the ASO can use them. If they already know PI’s services, Will conducts a simple interview to measure their satisfaction and identify any problems they might have.

From letters we have received from some of these ASOs, Will’s visits make a difference. He’s done so well that we’ve instituted the “PI-in-Person” project to expand on his efforts. If you would like to deliver PI information to ASOs in your area or in your travels, contact Ben Collins at 415-558-8669. He’ll ask you to prepare a contact list so we can follow the sites you are visiting and he’ll send you a basic kit of PI information to get you started.

Supporting Project Inform

Contributions from our constituents provide 70% of our budget, one of the highest percentages of any major AIDS organization. Other funding comes primarily from private and corporate foundations. Project Inform does not compete for government funding.

Consider making a gift in memory or in honor of a friend or loved one, join Partners in Hope—a major individual gift program—or become involved in the Ron Wilmot Bike Ride for Project Inform. Partners in Hope promotes annual donations of $500 and more to Project Inform—approximately 20% of our annual budget is funded by these contributions. Contributions to any of Project Inform’s programs may be made by check, Visa/MasterCard or as a monthly or quarterly pledge. To join Partners in Hope, or to get more involved, contact Development Associate David Mills at 415-558-8669.

There are several ways you can help while you are shopping. In San Francisco, Under One Roof (2362 B Market Street), the Shop for AIDS Relief, has an array of gift items from which to choose—and those marked “Project Inform”, or with our code “36”, directly support us. Project Inform is also a beneficiary of Cole Hardware’s philanthropic program. Simply tell the clerk at any of their three stores (956 Cole Street, 3312 Mission Street and 70 Fourth Street) that you want to support Project Inform and give them the code “1965” and 10% of the amount you spend will be sent to Project Inform as a donation. The Community Thrift Store (623-625 Valencia Street) is a fine place to shop, and a great place to donate your extra things. When you donate, tell them you want to benefit Project Inform (code “18”), and we will get the proceeds from the sale of your items. Plus you get a tax deduction! In New York City, Stadtlanders Wellness Center on Eighth Avenue at 17th Street has many gift items. Those marked “Project Inform” directly support us. We are grateful to these generous stores for all they do for so many AIDS organizations.

Estate Planning

One major way to support Project Inform is through a planned gift—through your will or estate, a lifetime special gift of appreciated stock or property, or through a trust gift. If you would like to learn more about these opportunities, please call Director of Development Tom Teasley at 415-558-8669.

Project Inform is grateful for recent donations from the estates of the following individuals:

The Michael L. Griffin Living Trust
The Estate of Gerald G. Hansen
The Estate of William Jarmon
The Estate of James Grant Jensen
The Estate of Terry Higason Lea
The Estate of Thomas Butler Eastland, III
The Estate of Edward H. Petersen
Larry Joe Silva Trust

You Can Make a Difference in Many Ways!

Project Inform provides all of its services free of charge to all who need them. This publication, along with our HIV/AIDS Treatment Fact Sheets, the National HIV/AIDS Treatment Hotline, the Project Inform Web site, and our education and outreach programs, are a valuable resource for more than 100,000 individuals. Please join the more than 3,000 people who made that possible with their tax deductible donations to Project Inform last year.

There are many different ways to support Project Inform in addition to making a donation, from being a volunteer in our San Francisco office, becoming a member of our national Treatment Action Network, encouraging friends to access our information, helping promote a Project Inform Town Meeting. Let us know on the form below if you would like to receive our new brochure that explains all of our programs—and how you can help.

The Ron Wilmot Bike Ride for Project Inform

Everyone at PI was saddened at the death of volunteer and biker extraordinaire, Ron Wilmot, in February. Ron was a vital example to others as he actively and lived with HIV disease for 18 years. Ron raised funds for Project Inform and other AIDS organizations through a variety of fund raising bike rides in San Francisco. He raised more than $130,000 for PI over the years. In 1995, Ron founded the Ron Wilmot Bike Ride for Project Inform, a 7.5 mile casual ride through Golden Gate Park that raised more than $50,000 in its first two years.

Together with Ron’s family and friends, Project Inform has pledged to continue the Ron Wilmot Ride. It will be on Saturday, May 10, 1997. A description and sign up form is enclosed with this issue of the PI Perspective. For further information on how you may help, ride or donate, please contact David Mills at 415-558-8669.

1996 In Review

Advocacy
The record speed shown by the FDA in approving protease inhibitor drugs this year was the culmination of work that began at Project Inform back in 1985. PI played a major role in every step of FDA accelerated drug approval, from the Treatment IND (1987), to the Parallel Track (1990) and Accelerated Approval (1994) regulations. Each step was part of groundwork leading to the quick approval of protease inhibitors. But, rather than bask in the success of this quick action, in 1996 PI focused on developing new antiviral strategies, since it is all but inevitable that current drugs will eventually fail some people. The work done this year will help ensure that new therapies will soon be available to take up the slack.

PI—almost alone in the nation—also successfully advocated for developing immune-restoration therapies. The entire field of AIDS immunology had been pushed aside by the advances in virology. PI helped renew the spirit of researchers through the 1996 Immune Restoration Think Tank. Participants agreed that this meeting was the most important and effective yet. As an example of this work, PI has been almost the sole advocate for major development of IL-2 research. Although studies have shown this to be the most potent immune therapy yet, the complexities of studying it have caused government, industry and advocates to shy away. PI has led the way in keeping the product alive and securing support for its development.

Hotline
The Hotline department upgraded the skills of dozens of operators while training new ones to cope with the rush of new questions created by new treatment options. The new therapies have greatly increased the number of calls and the level of information needed to answer them. The Hotline has also increased the ethnic diversity of our operators; assisting and complementing other PI outreach efforts to under-served communities. Better management and coordination greatly increased the support provided to hotline operators and improved the evaluation of operator performance.

Information
PI achieved new sophistication in producing publications. We led all other information providers in moving from simply providing information about drugs to explaining the need, and providing the means, for creating long-term medical strategies. PI was unique in describing the differences between the various protease inhibitors, the risks of drug resistance and drug interactions and the necessity of careful choices. PI articles explaining the need for compliance with prescribed drug regimens had reached more than 100,000 people long before the issue became popular. Physicians and researchers in hospitals, medical offices, and government facilities were unanimous in their praise of the new PI materials as “state of the art.” These materials have been the most widely requested and most widely reprinted in our history. 1996 saw both the greatest number and highest quality of new publications. Together, these met the profound need for information created by the advent of the new approaches to therapy.

Outreach
The Outreach program was created three years ago primarily to manage the schedule of Town Meetings and presentations made by PI staff. Last year, it matured into a major arm of Project Inform, charged with bringing our message of hope and empowerment to an ever wider audience around the country and in particular to under-served minority communities. It has come to serve as a primary point of contact between PI and other agencies nationwide. Its innovative work in providing treatment education training for the “case managers” of other AIDS service providers has literally defined a new and previously unmet need in the epidemic, one made all the more urgent by the advent of the new therapies. For the first time, Project Inform is increasingly seen as a service for “everyone.” Day-to-day work has developed a rapidly improving web of relationships between Project Inform and the other agencies serving communities throughout the nation.

Policy
The Policy Department succeeded in making 1996 the year of the AIDS Drug Assistance Program (ADAP) throughout the nation. A small cadre of very large service providers, each with its own dependence on federal dollars, manages much of the national public policy effort on behalf of people with AIDS. Project Inform’s involvement in such national debates is critical in making sure that federal expenditures also serve the most direct needs of many people with AIDS: the need for access to treatment. As one of the very few voices which does not compete for federal dollars and Ryan White Care Act funding, Project Inform stood uniquely this year as a voice without potential conflict of interest regarding the distribution of various federal funds. The Policy Department and its grassroots component, TAN (Treatment Action Network), helped keep everyone honest in the national debate. Though much needs to be done before there is equitable treatment access nationwide, the PI Policy Department has kept this issue in the forefront and continues to make sure that the national debate recognizes the profound importance of meeting patients’ need for treatment.

Volunteer
The greatest accomplishment of the Volunteer Department is the way in which it has developed the volunteer body to represent the diversity of the epidemic. In our early years, our volunteers largely reflected the local gay male population, the first wave of the epidemic. This volunteer presence helped keep PI grounded in the needs of people living with HIV. The shift to a more diverse group of volunteers is helping us accomplish the same thing with more dimension and breadth. Also, the Volunteer Department has created the best support for administrative and staff functions we’ve ever had.

An added accomplishment is a better understanding of who comprises our volunteers; not just those who work the hotline and office support, but the Board of Directors, the Board of Governors, TAN, and the broad group of people who support us and help us in any way. The sense of “belonging” which now accompanies volunteering often becomes an attractive benefit of signing on.

PI on the Web
People from all over the world can access PI information via our web site. By 1997, the site was receiving over 63,000 hits monthly from over 54 countries. Daily updates of the Fourth Conference on Human Retroviruses and Opportunistic Infections are available on the site and we hope to provide this service for future conferences. We have also added access to the slides used in our Town Meetings. Soon a range of PI presentations on many subjects will appear on the site. If you use the Internet, you can help PI save money by getting PI information on-line. Please write, call or e-mail Karen Meng at PI and let her know that you get the PI Perspective through the Internet and you would like us to withhold mailings.

In Memory of Friends and Supporters

Donations have been recently made to Project Inform in memory of:

Sjafril Adjar - Dennis E. Allen
Terry Allen - Albert Annunziata
Kent Baker - Bill
Stephen D. Breitman - David Bury
Richard Cappiello - Dr. John T. Carey
Robert Chesley - Sable Clown
Raul A. Companioni - Lin Cotton
John R. De Beir - Sam de Cordova
Nancy Dell - Thomas Dickerson
Michael Dotson - Abraham Eisman
Joseph J. Erdos - Lou Franzese
David Frusti - James Giattino
Michael W. Gosnell - Andrea Haritan
Bob Hawes - Jim Henson
Jose Hernandez - Luis Hernandez
Roman Hicks - Richard P. Horton
Henry W. Hubbard, Jr. - Madonna Faraci
Nancy Irizarry-Rey - Raoul Joers
Stephen E. Jones - Ricky Keller
Jerald Kenyon - Gilbert Kiefer
Tim King - Keith T. Knowles
Don Koret - Joseph D. Kozak
Don E. Lee - Scot Leisy
Debra Lopez - Alan C. Mauney
Frank Maya - Robert Henry Mayerson
Joe Mirabella - Darrell Morgan
Marija Djenovic - Wesley Keith Murphy
Jerry Nann - Richard Norris
Andrew C. Pearson - Richard Peplow
Cade A. Plazinich - Tony Rihn
A. Beau Siegel - Vincent Slama
Howard R. Slifka - Marc A. Somberg
Wayne Spangler - John Sycamore
Tene - Albert Capati Ty
Aaron A. Walters - Kevin E. Wilcox
David E. Williams - Ron Wilmot
John “Zgraggen, III”