In Focus #22: February 2007

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Former Board President Alonzo Reese, with friend and board member Tom Kelley. Photo: Drew Altizer.

Project Inform’s annual Evening of Hope raises hope, inspiration and $280,000 for its mission

On October 11, 2006, over 300 guests gathered at Fort Mason Officer’s Club in San Francisco for Project Inform’s annual gala, Evening of Hope. The evening raised more than $280,000 to support Project Inform’s treatment education and advocacy programs.

As the sun set on the bay, guests looked onto the foothills of Marin enjoying cocktails by Diageo and delicious food provided by Taste Catering. The evening’s presentation began with a mix of ballads and show tunes sung by the talented Sharon McNight followed
by a live auction with auctioneer Stephen Valentino.

Anne Matlock, Paul Pelosi, Jr., Vivian Walsh, Reese Relfe. Photo: Drew Altizer.

In the tradition of Evening of Hope, three awards were presented to invaluable and dedicated activists who have worked tirelessly in the fight against HIV/AIDS. Board chair Michael Allerton commented in his opening remarks, “These individuals represent the passion and perseverance of responding to the epidemic and in never giving up hope until every individual who deals with this disease gets the best information, treatment and care possible."

This year, Project Inform was pleased to honor the following
awardees:

Healthcare Inspiration Award: WORLD (Women Organized to Respond to Life-threatening Diseases)
HIV Policy Leadership Award: Fred Dillon
HIV Activism Leadership Award: Hank Wilson

Evening of Hope honorees with Founding Director, Martin Delaney: (l to r) Fred Dillon, Laura Thomas (on behalf of WORLD), and Hank Wilson. Photo: Drew Altizer.

In a very emotional and inspirational speech, Hank Wilson accepted his award by acknowledging those lost to HIV/AIDS. “I’m walking in a very sacred path, forged by a lot of folks no longer here,” Wilson said. “They put their bodies on the line as human guinea pigs by testing new drugs that evolved to help the rest of us. But we must still keep teaching others because people keep joining the path ... and the path has grown wider.”

Founding Director Martin Delaney closed the evening by thanking the guests, corporate sponsors and supporters for their dedication to Project Inform. “We get only what we demand and fight for,” he said. “Project Inform will settle for nothing less than a cure.”

 

Project Inform hotline volunteers, Steve Suacci and Brian Whitford. Photo: Drew Altizer.

We thank all of those who helped make Evening of Hope 2006 such a tremendous success. Proceeds from this annual event help us every day to continue providing hope for the tens of thousands of people who rely on us for information about optimal treatment strategies, advocacy to expand access to treatment and care, and our commitment to move the research agenda forward in the quest for better treatments and, ultimately, the cure.

We gratefully acknowledge and thank the following supporters for joining us at EVENING OF HOPE 2006

VISIONARY CIRCLE ($25,000+)
In memory of Paul A. Anderson
Abbott Laboratories
Kaiser Permanente
Merck
Debbie & Andrew Rachleff

EMPOWERMENT CIRCLE ($10,000–$24,999)
Thomas A. Blount
Sako & Bill Fisher
Carol Swig

ADVOCATE ($5,000–$9,999)
Franklin K. Ching &
Charley L. Kearns
Pfizer, Inc.
Roche Laboratories, Inc.
Pam & Peter Rosekrans
San Francisco AIDS Foundation
Tom Steyer & Kat Taylor
Tibotec Therapeutics
Zephyr Real Estate

SUPPORTER ($2,500–$4,999)
Donald M. Davis, MD
Doris & Don Fisher
Mike McCune & Karen K. Smith-McCune
Joseph Rosenthal
Trish & Brian Schmeltz
Lydia & Doug Shorenstein
Dede Wilsey

PRESENTER ($1,500–$2,499)
Regina Aragon & Larry Levitt
Pat L. Christen
Barbara Craig
Pam Roberts & Mark Dickey
Mara Fritz
Michael Jon Gray &
Michael Salstein
Cathie & Pitch Johnson
Rich & Gina Kelley
Walter Leiss
Pratesi Linens
Lisa & John Pritzker

PARTNER ($1,000–$1,499)
Michael Allerton
Al Baum & Robert Holgate
Boehringer Ingelheim Pharmaceuticals
Lokelani Devone & Annette Brands
Dagmar & Ray Dolby
Laura & John Fisher
Dale C. Freeman
Joe Garrett & John Lomibao
Binnie & Ned Gates
Trish & John Hooper
Lisa Lewis & Marc Williams
Reese Relfe
Douglas Schmidt & Stephen Martin
Joel & Al Schreck
Carol & Rich Selsted
Serono, Inc.
House of Taylor Jewelry, Inc.

FRIEND ($500–$999)
In memory of Tim Lowe
Anonymous
Dave & Kathy Beem
Jane L. Breyer & Steve B. Lipson
Bebe Burke
Lisa Capaldini, MD
Christy & Mike Changaris
Maryon Davies Lewis
Jeffrey Fraenkel
Brenda & Thomas Freiberg
Jerome Goldstein, MD & Tommy Taylor
Jean & Bill Halford
Karen E. Hartwig & Jules Tortolani
Lance Henderson & Peter Atanasio
Shirley & Ryland Kelley
Tom Kelley
Ellen LaPointe & Kleigh Hathaway
Donna & Scott Leisy
Janet Minden
Kate Minott
Lonnie Payne & Bruce Clark
Ken Pearce
The Perillo Family
Kurt Peterson
Laura & Rick Pfaff
Rodger Rickard & Diane Talbert
Barbara & Lewis Schaffel
David S. Schwab
Audrey & Bob Sockolov
Nancy & Homer Steiny
Cissie Swig
Adrian M. Tyler
Anita Weissberg
Sam Whiting & Tori Ritchie
Gaetano Zanelli, MD
Andre Zervan & James Mercer II

The Phantom’s leading ladies perform at Help Is on the Way for the Holidays VII

Help is on the Way for the Holidays VIII Benefits Project Inform

A San Francisco holiday tradition of world-class entertainment

On Sunday, December 3, 2006, the Richmond/Ermet AIDS Foundation (REAF) held its annual event, Help is on the Way for the Holidays VIII. This San Francisco holiday tradition benefited
Project Inform and two other HIV/AIDS organizations in the Bay Area. The performance featured stars from Broadway, film, television and the recording industry as well as leading talent from the Bay Area.

Project Inform was honored to be selected as a beneficiary of this event and extends thanks to Joe Seiler and Ken Henderson as well as all the volunteers and supporters who made the evening a sparkling success.

REAF is a leading supporter of many AIDS organizations in the Bay Area and we applaud the Foundation for its commitment to making a difference in the lives of those who receive services and support from organizations such as Project Inform.

Project Inform was also grateful to be a beneficiary for their 2006 summer benefit, Help is on the Way XII, held Sunday, July 30. For information on upcoming REAF events, visit www.richmondermet.org.

In the Foundation Spotlight ...

Project Inform Receives Special Grant
from the Richard and Rhoda Goldman Fund
In recognition of the 25th year of AIDS in 2006, the Richard and Rhoda Goldman Fund donated $25,000 to Project Inform as part of a one-time special award of $1 million to 14 HIV and AIDS organizations in the Bay Area.

Although the Goldman Fund does not regularly fund HIV/AIDS and other health issues, the foundation decided that the somber reminder of the pandemic’s 25th year provided an excellent opportunity to highlight the fight against the disease in the Bay Area and the tremendous need for ongoing philanthropic support.

We thank the Richard and Rhoda Goldman Fund for its stewardship and for recognizing Project Inform’s commitment to ending the pandemic in this historic grant.

Evelyn and Walter Haas, Jr. Fund
Supports Health Care Advocacy Program
The Evelyn and Walter Haas, Jr. Fund has supported Project Inform since 2003 and most recently granted $35,000 to fund Project Inform’s Health Care Advocacy Program. The program’s goal under this grant is to maintain and increase HIV funding and assistance programs in California, and nationally, by focusing health care advocacy efforts on financing and delivery issues for Medicaid, Medicare, and the Ryan White CARE Act.

We are grateful for our partnership with The Evelyn and Walter Haas, Jr. Fund. For the most up-to-date information on our health care advocacy efforts, visit the health care section.

Project Inform Leadership Helps Shape
National Health Care Legislation

Ryan White CARE Act Renewed for Three More Years

On December 19th, President Bush signed legislation to reauthorize the Ryan White CARE Act for another three years. The CARE Act, established in 1990, funds care, treatment, and support services for low-income people with HIV/AIDS around the country. Although it had expired in September 2005, its funding continued past that date.

Reauthorization was a top priority for Project Inform’s Health Care Advocacy Program, which worked with national partners and took a leadership position for the best possible legislation. The signed bill resulted from a long process of negotiations among various stakeholders, including community advocates, the Administration, and Congress.

The CARE Act suffers from years of inadequate funding. States and localities have been forced to limit access to life-saving care and treatment services. Many states have created waiting lists and other cost-saving mechanisms in their AIDS Drug Assistance Programs. At the same time, some states and localities have seen a significant growth in the epidemic. Instead of targeting additional funding for areas with emerging needs, the reauthorization legislation was developed under the premise that there would be “winners” and “losers” (that is, money would have to be shifted from some geographic areas to others). As a result, Project Inform was never able to fully support any version of the bill.

Project Inform joins its advocacy partners in thanking Senators Mike Enzi (R-WY) and Edward Kennedy (D-MA), and Representatives Joe Barton (R-TX) and John Dingell (D-MI), and their staffs, for crafting the compromise bill.

Now that the bill has passed, Project Inform is looking to Congress to put the same attention and leadership into adequately funding the CARE Act as it gave to the reauthorization legislation. In particular, we called upon the new Congressional leadership to ensure that the $70 million increase for Title II is included in the final Fiscal Year 2007 appropriation bill. Longer-term, we look forward to developing proposed changes in the CARE Act for the next reauthorization, in three years’ time.

You can help us as we seek to protect and advance treatment and care for people with HIV! This is a great time to join the PI Action network, Project Inform’s group of grassroots community advocates, and work on these issues with us. Check www.projectinform.org for more information and regular updates.

Many of the provisions we fought for were included in the final legislation, including:

• An increase in funding for ADAP. This was a top priority for Project Inform, and should provide additional money to states with ADAP waiting lists without prompting cutbacks and waiting lists in other states. This was one key area where there were no “losers."
• A $70 million increase in Title II funding, which pays for primary care, treatment, and support services in all states.
• An agreement to count HIV cases, along with AIDS cases, in the formula that determines how much money each state and locality receives. This new formula will benefit states with emerging epidemics that have struggled to provide care and treatment services, particularly in the South.
• The inclusion of code-based HIV data as many states transition to a names-based system.
• Protections for urban areas that have long depended on CARE Act funding and that were in danger of losing a large portion of that funding under the “winners and losers” strategy. The legislation limits the amount of funding that can be taken away from these areas, and ensures that established systems of care for low-income, vulnerable people with HIV won’t be destabilized.

Project Inform Forges Protections
for Beneficiaries in Medicaid and Medicare

2007 Brings New Problems, New Opportunities in Health Care Advocacyrequirements

Protecting and improving Medicaid and Medicare continues to be a high priority for Project Inform’s Health Care Advocacy Program. January 1, 2007 marked the beginning of a new plan year for Medicare Part D, the prescription drug benefit, which meant new plan choices and, for some people (such as those who lost the low-income subsidy that helps them pay their share of costs), new obstacles. Project Inform spent the months leading up to the new year conducting trainings for people with HIV/AIDS and their providers about changes for 2007, advocating for other changes that would better protect beneficiaries, and providing individual counseling for people with HIV to help ensure they maintained
access to their medications.

January also brought a change in Congressional leadership and the possibility of new opportunities to improve and expand health care for people living with HIV/AIDS, as well as other medically vulnerable individuals. As a member of the steering committee of the HIV Medicaid and Medicare work group, Project Inform recently helped determine the group’s 2007 advocacy strategies. To view the group’s agendas for Medicaid and Medicare, go to www.projectinform.org/healthcare/medicaid_platform.html and /healthcare/medicare_platform.html.

Among other issues, we will be advocating for the Early Treatment for HIV Act, which would provide states the option to expand their Medicaid programs to serve people with HIV even if they are not sick enough to meet Medicaid disability requirements. We will also push for AIDS Drug Assistance Program payments to count toward an individual’s Medicare true out of pocket payments (the trigger that allows a person to move through the Medicare coverage gap to a level of meaningful coverage), and for the codification of the six classes of protected medications, including anti-retrovirals.

At the California state level, Project Inform, in partnership with the California Low Income Health Advocates, will continue to fight to extend the Medi-Cal emergency drug benefit through FY ’07–’08. This benefit allows those who are eligible for both Medi-Cal and Medicare to temporarily access their drugs through Medi-Cal if they are unable to get them through their Medicare Part D benefit. The emergency drug benefit is a lifeline for some of the most vulnerable
Medicare beneficiaries.

We believe there is great opportunity for positive change ahead, and for finding solutions to the health care crisis in this country. We encourage you to get involved and communicate with your elected representatives on these issues, and on other issues important to you. By joining PI Action, Project Inform’s grassroots network, you will receive alerts and updates with ways you can make your voice heard. To join, go to www.projectinform.org/healthcare/action.html. We also encourage you to contact us with your input, concerns or issues regarding public HIV/AIDS health care programs. You can reach us at 415-558-8669 x208 or x224, or at action@projectinform.org.

Paul Dalton, Treatment & Research Advocate

Staff Member Named to National Guidelines Committee

Project Inform is pleased to announce that Paul Dalton, Treatment
and Research Advocate, has been selected for a seat on the U.S. Department of Health and Human Services Adult and Adolescent HIV Treatment Guidelines Committee. The Guidelines Panel, as it is usually known, writes and maintains a detailed set of standards to help guide HIV-treating physicians throughout the country. The panel is comprised of many of the nation’s top HIV specialists, researchers and community activists. Mr. Dalton’s three-year term begins in February 2007.

Mr. Dalton is the latest Project Inform staff member to serve on the panel. Project Inform’s continued participation in the Guidelines Panel and similar groups is central to its mission of advocacy for people living with HIV/AIDS. This participation allows us to relay the daily concerns and issues that we hear from our constituents to the leaders in important research and care programs throughout the U.S., and ensures that Project Inform and its constituents have a voice in setting the standards of care for HIV.

Jonathan Goldman, Hotline Manager

Project Inform Welcomes New Hotline Manager

Thanks to a grant from Academy of Friends, Project Inform hired Jonathan Goldman in October to serve as Hotline Manager to Project Inform’s National HIV/AIDS Treatment Hotline. Having served as a hotline volunteer for over ten years, he is no stranger to Project Inform.

Jonathan volunteered with Project Inform so he could share his personal experiences with HIV/AIDS and provide up-to-date information to individuals who don’t have immediate access to detailed information about managing their healthcare. “I find it most rewarding talking to people from all over the country to help them find resources in their community and providing them with the tools to make informed decisions,” states Jonathan.

Currently Jonathan manages ten volunteers on the hotline, which operates Monday–Friday from 10am–4pm PST. The hotline receives approximately 1,000 calls a month, centering on one of two topics: basic information for people who are newly diagnosed with HIV, or in-depth information on treatment options. The average call on either of these two topics can last 30–50 minutes.

In an effort to offer constituents a greater range of options, a caller can also leave a voicemail message or email a question to a hotline volunteer. A volunteer will call them back should more information become available or if an important update is found.

In addition to recruiting, training and guiding volunteers, Jonathan has also been increasing the visibility of the hotline nationally and locally, giving many more people with HIV greater access to the wealth of detailed treatment information that the hotline operators provide. To learn more about how you can become a hotline volunteer, contact Jonathan at 415.558.8669 x215 or jgoldman@projectinform.org.

Signing up for Online Updates:
A Great Way to Get Treatment News

One of Project Inform’s primary goals is to keep its constituents—people living with HIV/AIDS and those who care for and about them—up to date on the latest HIV treatment information. One way we do this is by providing online coverage of the many HIV-related scientific conferences we attend. In 2006, Project Inform provided daily online updates from the Retrovirus Conference and the International Conference, as well as thorough online coverage from other meetings such as Interscience Conference on Antimicrobial Agents and Chemotherapy and the Lipodystrophy Conference

.Attending and covering major scientific conferences is both exciting and hugely challenging. Our advocates sift through a dizzying array of posters, speakers and abstracts to find the ones that will be most important to our constituents. Then this highly technical information must be reviewed and digested so it can be written for a general audience.

Our commitment to providing late-breaking news isn’t just confined to coverage of the conferences we attend. We keep abreast of changes in drug development and treatment strategies daily through contact with pharmaceutical companies and researchers.

In its coverage of treatment news, Project Inform strives above all for accuracy and relevance. We take great care to ensure that the information we publish is fair and accessible to our constituents ... vital to our mission of information, inspiration and advocacy.

For the lastest news on treatment information, check our In the News section.