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In Focus #6: Winter 1998Hotline Assessment Nears Final ReportThe Treatment Information Assessment Project (TIAP), funded by a grant from the Henry J. Kaiser Family Foundation, has been collecting information over the past nine months on the nature of questions callers ask on Project Inform’s National HIV/AIDS Treatment Hotline. The project’s report of findings is ready to be released. The purpose of TIAP was to discover if questions to the Hotline differed based on gender, geography, income and HIV status, and what conclusions could be made to improve the delivery of pertinent treatment information to those who need it. The report from the Project Inform/Henry J. Kaiser Family Foundation Treatment Information Assessment Project will be available in December 1998. To receive a copy, please call David Evans at 415-558-8669 x215. Newest Project Inform Board MembersProject Inform is pleased to announce four new members to its Board of Directors. Jim O’Donnell, MD, a long-time supporter of Project Inform, is a pediatrician at the Kaiser Permanente Medical Center, Redwood City. His partner, Ron Wilmot, started the Ron Wilmot Bike Ride to raise donations for Project Inform. Jim has continued to be a key supporter since Ron’s death in 1997. Joseph R. Garrett is the Vice President of European Telecom and has served on the Board of the Contra Costa AIDS Task Force. Jim Gutschick is also a familiar face from years of volunteering for Project Inform. Retired from his own businesses, Jim has supported AIDS organizations across the country with his amazing participation in AIDS Rides—participating in every one of them in 1997, including two for Project Inform, the Ron Wilmot Ride and RideFar5 in Massachusetts. Lokelani Devone joins our Board after serving most recently on the board of Continuum, San Francisco. Lokelani is an attorney at DFS International. First Certification Training a SuccessThe first training of the Treatment Education Certification Program (TECP), described in the last issue of In Focus, was extremely successful. TECP is a collaboration between Project Inform and Asian Pacific Islander Wellness Center provided through the San Francisco Department of Public Health. One participant commented the training “bridged a gap between my psychosocial approach and medical understanding”. Seventeen case managers, treatment advocates and peer advocates from eight agencies attended. To receive information about the TECP trainings which are being scheduled for January and February 1999, call API Wellness Center at 415-292-3400. The Bill Bradley Award for Exemplary Volunteer Service was begun in 1993 to recognize volunteers who have provided a high level of outstanding service over time to Project Inform. This year’s recipients, Drew Smith and Grahame Perry, were again recognized at the 1998 Project Inform Evening of Hope on November 2. In the last issue of In Focus there was a statement from Grahame. My name is Drew Smith“I found out about Project Inform through Pat Bresler at the Volunteer Center. I have been volunteering at Project Inform since 1996. I started just a few days at week. Now that we are at the new location, I have been volunteering for 4 or 5 days a week for 4 or 5 hours a day. A lot of what I do involves making introductory packets. I answer phones, take care of mail and do envelope stuffing.” “I really think Project Inform does a lot for people living with HIV who might not know of medications that could be helping them. It’s maybe not an easy thing living with AIDS, but we can make a difference. We have to get the word out, which we do. I like playing an active role in doing that. I really like the people here. I don’t feel I do as much as I did when I was working full-time out in the real world, yet I feel like I get a lot of recognition and positive reinforcement.” “It makes me want to do more. I’m not sure when or if I am going to return to work, but I like to stay busy. It gives me a good feeling at the end of the day that I am doing something that not only helps myself but helps other people living with HIV.” 1998 Evening of HopeProject Inform’s 1998 Evening of Hope was held November 2, 1998 at the St. Francis Hotel, San Francisco. The dinner was a great success, by raising over $200,000 for Project Inform’s programs and by sharing the information of our speakers. Steve Morin, PhD, Associate Professor of Medicine and Director of the Public Policy Research Center, UCSF AIDS Research Institute, Marva Miller, founder of Kansas City’s Women On A Mission, and Project Inform Founding Director, Martin Delaney, all gave meaningful and moving accounts of where we are now in the AIDS epidemic and what the future holds. Festivities from 1998 Evening of Hope. (l to r) Mayor’s Office
Liaison Bill Barnes, Board Member Tom Kelley, Founding Director
Martin Delaney, Outreach Coordinator Judy Hogan, and Sean Sasser. A list of contributors who helped make this event successful can be found below. Los Angeles Dinner Plans in the MakingThe Third Project Inform Los Angeles Awards Dinner will be held next spring in Beverly Hills, California. The arrangements for this event, which has raised over $200,000 for Project Inform in the past, are just being made. Contact Julie Doherty at 415-558-8669 x 223 if you want to receive further information, and to get an invitation. Project WISE and WISE WordsProject Inform is pleased to announce that Angela Garcia has joined the staff as Information and Advocacy Associate and Project WISE Coordinator. She comes to Project Inform from the Gay & Lesbian Medical Association where she worked on issues specific to HIV-positive lesbians and youth. One of Angela’s first duties will be the continuation of WISE Words, the newsletter of Project WISE, a multi-departmental program focused on treatment issues specific to women living with HIV. Each issue will include articles on treatment, public policy, outreach, the hotline and articles from guest writers from the community-at-large. The first issue was published in October; another will be out the end of December. Also, as part of Project WISE, a new and comprehensive fact sheet on gynecological complications in women with HIV is now available. To get on the mailing list for WISE Words, either call Angela Garcia at 415-558-8669 x205 or email us at WISE@projectinform.org. To receive a copy of WISE Words and Gynecological Complications in Women with HIV, call our National HIV/AIDS Treatment Hotline at 1-800-822-7422. NIAID Council MembershipMartin Delaney, Founding Director of Project Inform, has recently completed nine years as a member of the National Institute of Allergy and Infectious Diseases (NIAID) AIDS Research Advisory Committee, and a four year stint on the NIAID Council. He is the only AIDS activist to serve on the NIAID governing council and is the longest serving member on the AIDS Research Advisory Council. In this capacity, Martin Delaney has had an influential role in virtually everything the NIH has done on AIDS since 1989. Congratulations to him. Many thanks for continuing in this important role. Public Policy News and Treatment Action NetworkMembers of the Treatment Action Network (TAN) can now receive TAN Alerts through email. A recent evaluation of TAN found that members online were the most active. If you are a new member of TAN or an old member who want to receive TAN Alerts by email, please send your request to TAN@projectinform.org. Project Inform’s Public Policy Department is now offering technical assistance to help organizations establish their own training to develop the advocacy skills and increase the knowledge of current policy issues of their staff. For information on this service, contact the Public Policy Department at 415-558-8669. Advocacy NewsAs a result of the Project Inform-sponsored meeting “Exploring New Technologies to Overcome Challenges of HIV/AIDS Treatments” last year, NIAID will be providing grants to focus on the development of drug delivery devices specifically for HIV therapies. Project Inform board member and treatment activist, Linda Grinberg, has spearheaded the distribution of a consensus statement regarding the pricing of Sustiva and Ziagen by Dupont Merck and GlaxoWellcome to AIDS service organizations. The statement questioned the fairness of both drugs’ pricing in light of the long-term survival and treatment of individuals with HIV. So far, hundreds of AIDS service organizations and individuals have signed the consensus statement. Congress Approves Major Increases in HIV/AIDS Funding for Fiscal Year 1999In October, Congress approved some significant increases in HIV/AIDS program funding as part of the Fiscal Year 1999 budget. One of the biggest victories was a $175 million increase for the AIDS Drug Assistance Program (ADAP), which provides treatment to low income individuals with no or inadequate prescription drug coverage. This represented the entire amount requested by the National ADAP Working Group, of which Project Inform is a member. The Treatment Action Network played a major role by calling, writing and meeting with their federal representatives in support of increased funding. The budget also provides a 12% increase in AIDS research, a $23 million increase for prevention programs and $110 million in new funding secured by the Congressional Black Caucus to help fight the epidemic in the African American community. Congratulations and thanks to everyone who worked to obtain these badly needed resources! A Letter from a Project Inform ConstituentDear Friends, I’ve been a ‘friend’ of Project Inform since the late ‘80s when I worked in Palo Alto coordinating the embryonic AIDS clinic at the VA Hospital there. I remember hearing Martin Delaney speak at one of the community meetings I attended in San Francisco and thinking that with all the energy and intelligence at Project Inform, the epidemic could not last long. Well, it’s 1998 and there’s still no end in sight. I’m writing to complement you once again on the extraordinary intelligence and energy which continues to batter away at the epidemic and the bad politics and bad information which continues to swirl around it. I received a half hour ago PI Perspective #25. The cover article on the Geneva Conference blew me away with its spirited yet principled criticism of the proceedings. I can only hope and pray that Project Inform will be with us for the duration. I only wish I could send you a larger donation (and one day I will!) John Ginetti, RN, MSN, MPH End of Year GivingIf you are considering end-of-year charitable contributions, we hope Project Inform is in your plans. There are a number of ways you can support Project Inform: become a member of Partners in Hope with a gift of $500 or more; become a Pledge Partner with a monthly credit card donation of any size; make a gift of appreciated stock or real estate; or even donate your old car. To learn more about these and other ways to support Project Inform, contact Tom Teasley at 415-558-8669 x209. A special way to support our work is to give us your holiday card lists!For a suggested donation of $5–$10 per card, we will hand address and sign a card for each person on your card list, noting you’ve made a donation in that person’s honor to Project Inform. We will then mail the cards to everyone on your list, if you want us to. To participate in the Holiday Card Program, fill out the form below. We are pleased to accept MasterCard, Visa, American Express or your personal check as payment. If your list is large, or if you want to discuss a special holiday card project, call Julie Doherty at 415-558-8669 x223. (Please order by December 14 to ensure your cards arrive on time.) One of five designs available. Blank inside. The 1998 Evening of HopeA Heartfelt Thank You to the Major Contributors of 1998 Evening of Hope. Event Underwriter Benefactor Tables Patron Tables Sponsor Tables Supporter Tables Scholarship Tables Individual Benefactors Individual Patrons Additional Thanks Evening of Hope Host Committee |
PAST ISSUES#6 Winter 1998 |
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