 |
||||||
   |
In Focus: Winter 1997Information … How do you stay informed?A second edition of The HIV Drug Book has just been completed. This edition includes over 30 new individual drug profiles, updated information and articles, including a review of the Federal Guidelines on anti-HIV drugs. Published by Pocket Books, it will be available at bookstores in early 1998, with a new cover, new look and a whole lot of new information! The book will cost $18 U.S. and $24 Canadian. What are the questions coming in to the Project Inform National HIV/AIDS Treatment Hotline? To answer this, Project Inform will begin the Treatment Information Assessment Project. This information will be of valuable assistance to Project Inform and other groups. Supported by a generous grant from the Henry J. Kaiser Family Foundation, and prepared in collaboration with the Center for AIDS Prevention Studies, the project will complete a final report in late 1998. Many people think about making charitable gifts as we approach the end of the calendar year, either because it is the season of sharing, or for tax reasons. Throughout this In Focus, you will see many ways to support Project Inform this fall—from having us send your Holiday Greeting Cards, to making plans to be a part of the Ron Wilmot Bike Ride for Project Inform, to making an end of year donation. Another important way that you can support Project Inform and its fight for better HIV/AIDS treatments is through Planned Giving, either through your will or estate, or special lifetime gifts of cash, appreciated stock or real estate, or other donations. If you would like to discuss any of these possibilities, please contact Tom Teasley, Director of Development, at 415-558-8669, or by email: tteasley@projectinform.org. Supporter Kathy Ireland at Macy*s Passport ‘97 in Los Angeles PI’s web site has a new look! The site has been redesigned and now includes more information and is easier to navigate! If you haven’t checked it out recently, you might want to explore our information. For those not traveling the information superhighway, everything on the site is also available through the Hotline (1-800-822-7422). February 1–5, PI staff will be attending the Fifth Conference on Retroviruses and Opportunistic Infections, one of the most important AIDS conferences. Mark your calendar and log on for nightly updates from the conference! The address is www.projectinform.org. Improvements to the site were supported by a $50,000 grant from the Macy*s Passport ‘97 fashion show events in San Francisco and Los Angeles, in September. Thanks to Macy*s Passport ‘97 for choosing PI as a national beneficiaries—along with the Elizabeth Taylor AIDS Foundation and the Magic Johnson Foundation. Inspiration … Making a Difference!The Fourth Evening of Hope was held on November 7, 1997 at the St. Francis Hotel in San Francisco. This dinner is the signature annual fundraising event for Project Inform, and was very successful. Dr. Robert Gallo, Director of the Institute of Human Virology, in Baltimore and Dr. Sandra Hernandez, Director and CEO of the San Francisco Foundation, as well as Project Inform Founding Director Martin Delaney spoke on new issues in HIV/AIDS treatments and access to care. The 1997 Evening of Hope was PI’s most successful event ever,
raising nearly $250,000. Thank you to the major contributors below
and the hundreds of other supporters. New and better HIV treatment options create the need for a better understanding of how to access and use these options and develop effective long-term treatment strategies. People rely on service providers for many of their most basic needs, including treatment information. Project Inform’s departments regularly provide technical assistance services, usually in collaboration with AIDS service organizations, to support service providers in their efforts to guarantee that their clients receive accurate information about treatment. “your publication is critical to my survival … Alan J. Once again, with the continuing support of Total Communications and our volunteers, Project Inform is offering a Holiday Card Program; either cards for purchase, or as a complete card service. Just send us your holiday card list along with a suggested donation of $5-$10 per name, and Project Inform will send personalized cards to them letting them know that a generous gift has been made in their name. There are three holiday card designs available—with artwork donated by Alan Desparti, Rachelle Mark, and Michael Cronan, Please see the enclosed order form, or call 415-558-8669 for information. An inspirational challenge grant has been offered by Jim Hormel to promote membership in Partners in Hope (PIH). The Hormel Challenge will match one dollar for every two dollars donated from a new PIH member, or for increased donations from current PIH members. Partners in Hope Membership begins at $500 and is the individual giving program that provides PI with approximately 10% of its budget. We are grateful for Jim Hormel’s generosity, and the continuing generosity of the nearly 300 PIH members. An event thanking current PIH members and encouraging new members took place on September 12, 1997 at Cartier in San Francisco. Executive Director Annette Brands thanked Jim Hormel for his Challenge Grant, and Dawn Averitt introduced the capacity crowd of more than 150 PI friends to Project WISE, PI’s new program serving the treatment information needs of women with HIV. Thanks to Wes Carroll, local manager of Cartier, who made the event possible. Project Inform volunteers have been active in many ways throughout the country. Thanks to PI volunteers Jim Gutschick and Jeff Brooks who participated in RIDE FAR 5, as well as all the other AIDS Rides across the country this year. PI Director of Programs Ben Collins also took part in the five day ride, as part of the all-volunteer support crew. This year, Project Inform is the national beneficiary of RIDE FAR which is held every other year in Massachusetts. Special thanks to Suzy Becker, who runs the 500 mile ride with almost no overhead. Nearly 100% of the money donated goes to the organizations. One Volunteer …My name is Jack Shallow. In 1989 I went on disability and at the time I was battling fatigue and severe diarrhea. Many of my friends had died or were dying from AIDS. I decided to stop working 12-hour days, take charge of my life and stay alive. I took care of myself and took an active part in my health care. This is where Project Inform came in. I began going to PI town meetings about 8 years ago, where I learned about the volunteer program. PI was one of the few places to get reliable information on treatment. In 1989 there were not many choices—essentially AZT. After going to many town meetings, I decided that I needed to do something. I made the choice to try AZT. A few years later, a second drug, ddC, was sold on the underground. It had not been approved by the FDA yet. Through PI, I found out how to get ddC through a buyer’s club. I started two-drug therapy and my T-cells stabilized. As I continued to go to town meetings I realized that PI could use my talents on the Hotline. I was an Engineer by education but worked selling technical products and people seemed to be able to relate to me. I went through a 2-day training and now I volunteer for one shift a week, on Thursdays from 11am until 2pm It is an incredible shift! All the shift volunteers—Diane, Jack, Steve, Bjorn and Michael—have a great sense of comaraderie and we help each other with calls. After 7 years as a Hotline operator, you’d think that I would be burned out, but I’m not. I feel I am making positive changes in the lives of the people I talk with. I give people hope by sharing my own story. Callers often react by saying, “Well, there really is hope!” Yes, there is hope. I encourage callers to get educated and I stress the importance of their taking an active part in treatment. I tell them how gaining knowledge on treatment can help them talk to their doctor, better manage their lives and insure that they are receiving optimal health care. Recently I received a call from a man in a rural area. In the course of our conversation I told him that I was HIV positive. He shouted “You mean I am talking to someone who is HIV positive, I have never talked to an HIV positive person before!” In addition to providing him with information, I felt like I was helping to break through the isolation that sometimes accompanies this disease. Contributing to our community this way inspires me—as much as I give, I get back! Advocacy … What is PI doing for you?Improving Access: PI has helped design nearly every expanded access program for new anti-HIV therapies. Recently PI pushed for broadened access of abacavir (1592), efavirenz (Sustiva, DMP266) and adefovir (BIS-POM PMEA). All of these programs are now providing drug to those who qualify! Finding Solutions: Project Inform is dedicated to pushing for solutions to the unique problems of HIV treatment. Recently, PI organized a meeting bringing together pharmaceutical and drug delivery companies to explore the use of new delivery technologies in overcoming problems in HIV treatment. It may be possible to use new technologies to make drug regimens easier, and drug levels steadier—thus reducing the likelihood of resistance and improving the effectiveness of therapy. Promoting Studies: PI has been a community leader in advocating for studies of Interleukin-2, a promising immune-based therapy. A large study is anticipated to enroll in early 1998. And, in association with the Foundation for AIDS and Immune Research (FAIR), PI has funded several cutting edge studies including studies of prednisone, cyclosporine-a, and total lymphoid irradiation. Previously, PI has funded studies of cell therapy, thymus transplantation and baboon-to-human bone marrow transplantation. Addressing Adherence: PI is working with health care providers, pharmacists and community groups to develop programs to help people adhere to the drug regimens required in the management of HIV disease. Fighting for Funding: PI and the Treatment Action Network, successfully worked at the federal level to defeat deep cuts and harmful reform proposals in the Medicaid Program. “Thank you so much for the last newsletter I received which included fabulous information on women and HIV. I have been provided with no better information from any source.” Anne T. Working on ADAP: Project Inform has successfully worked with a number of state’s AIDS Drug Assistance Programs (ADAP) to increase state funding and streamline programs to better meet people’s needs. New federal guidelines state the importance of combination therapy, including protease inhibitors. But, many state ADAPs cannot supply HIV treatments to all who need them. Most states have implemented emergency measures to deal with their fiscal crises. Colorado and Arizona are expecting to close their programs in the next few months. Some states do not offer protease inhibitors, while others have capped enrollment or restricted access. Only four states include all the drugs recommended for opportunistic infections. Advocates, including PI’s Treatment Action Network, are urging federal representatives to support higher funding levels to help alleviate the ADAP crisis. For an update on the budget situation, or to find out how to get involved, call the public policy department at 415- 558-8669 or email TAN@projectinform.org. In Memory of Friends and SupportersDonations have been recently made to Project Inform in memory of:
Donations in honor of the following have recently been made to Project Inform: Michele Adams We deeply appreciate these meaningful gifts to the fight against AIDS. Planned Gifts and BequestsWe would like to give special thanks for recent special gifts: Joseph M. Califf, Jr. Irrevocable Trust |
PAST ISSUESWinter 1997 |
||||
|
© 2008 Project Inform 1375 Mission
Street, San Francisco, CA 94103 415-558-8669 |
||||||