In Focus #19: April 2005

Executive Director Ellen LaPointe Steps Down
Advocacy efforts expand during tenure

Ellen LaPointe,
Executive Director

After four years of exemplary leadership and service, Ellen LaPointe stepped down as Executive Director at Project Inform. Her last day with the organization was April 1.

“I have been honored and proud to be a part of Project Inform and its extraordinary work and accomplishments over the last four years,” said LaPointe. “I have nothing but the highest regard and respect for the staff, our Board and our volunteers, all of whom have remained steadfast in their commitment to people with HIV disease through the incredible challenges we have faced together. I appreciate the strength of our relationships with the many community partners whose personal and professional efforts have significantly enhanced our efforts. And I thank our many supporters who have continued to stand with us during lean economic times.”

Under LaPointe’s leadership, Project Inform expanded its investment and impact in public policy advocacy to enhance access to HIV-related care and treatment. One major accomplishment in this area was Project Inform’s key leadership role in the successful defeat of Governor Arnold Schwarzenegger’s proposal to cap ADAP enrollment in California in 2004. During her tenure LaPointe also strengthened and expanded key relationships with community partners and supporters to ensure continued maximum impact and reach in Project Inform’s work.

Founding Director Martin Delaney praised Ellen, adding that the organization will continue to thrive under new leadership. “Ellen has been a great partner for me personally in our work and an effective leader for Project Inform,” said Delaney. “Our strength and consistent vision have allowed us to be an important contributor in the fight against AIDS for the last 20 years and Project Inform remains strong and well-equipped to face the challenges ahead.”

Marty’s Musings … Superbug or Superhype?

Martin Delaney, Founding Director

No recent story on AIDS has received as much coverage as the report from New York claiming the discovery of a new “super strain” of HIV. They claimed to have found a new version of HIV which was multi-drug resistant, “virtually untreatable,” able to cause progression to AIDS in a few months, unlike any form of HIV seen before, and likely to be spreading. It was isolated from a user/abuser of the recreational drug crystal meth who had sex with dozens or hundreds of partners.

The story set off panic among HIV prevention workers and public health officials, while renewing calls on right wing talk radio to quarantine people with HIV and exclude them from coverage by insurance and Medicaid. The story ran for several days in newspapers, especially the New York Times.

The problem: Most of the scientists we contacted said the report was a lot of hooey. Within hours, Project Inform issued a counter-press release, arguing there was nothing new about people being infected with multi-drug resistant virus, that the person was far from “untreatable,” and that there was not enough data to conclude he had progressed to AIDS in a few months, if at all. As the researchers had only followed the patient for a number of weeks, it was premature to draw any conclusions at all. It would take several months or more than a year to know what was really going on.

At a major scientific conference twelve days after the initial report, several scientists agreed with just about everything in the Project Inform press release. Still, the writers of the original Times story persisted in their alarmist reporting, largely ignoring what other scientists had to say.

The dust settled in late March when the New York public health officials issued a much revised update. The patient is now responding well to treatment, apparently no longer “virtually untreatable.” There is as yet no evidence that the virus has spread and they acknowledged that a substantial percentage of people newly infected with HIV have multi-drug resistant virus—that this is not something new. And they now say it will take many months of follow-up to determine the true significance of this case. Sounds pretty familiar to me. The lesson: don’t trust everything you read about AIDS in the media.

Interim Executive Director Named

The Board of Directors has announced the hiring of Gail Kaplan as interim executive director. “We are confident that Gail Kaplan is the right person to help navigate Project Inform during this period of transition,” said Board President Stephen Suacci. “Her skills at assessing organizational strengths and helping staff and volunteers cope with change should benefit Project Inform as we begin the process of searching for a permanent executive director.”

Kaplan is an organizational development consultant with over 20 years of experience in organizational assessment, management development and strategic planning. She last served in an interim executive director capacity at the STOP AIDS Project in 2003.

Project Inform @ 20

It’s hard to believe that two decades have passed since Project Inform was founded. The organization’s founders attached the word “project” to the name in 1985 because they viewed their efforts as a short-term, activist-based response to an urgent need for information about treatment and access to the emerging arsenal of medications. At that time, nearly everyone assumed the problem of AIDS would pass quickly. As we are all painfully aware, they were quite wrong.

Twenty years later, it is your unwavering support that has helped Project Inform lead the way in the call for better treatments for HIV, in ensuring that these treatments are available to the people who need them, and in providing vital information to people with HIV and the people who love them. This integrated approach to treatment education and advocacy is the core of Project Inform’s ongoing legacy and vision of hope.

Project Inform’s landmark year culminates with the return of our signature gala, the San Francisco Evening of Hope on Tuesday, October 25 along with an exciting online auction. Keep checking our website at for updates about these and other planned events in the coming months.

Join us for an inform-all evening.

Kenneth Cole New York will host a charity shopping event to honor Project Inform’s 20th Anniversary. Founding Director Martin Delaney will be on hand to speak about Project Inform’s history and vision for the future. Metro New York supporters and their friends are invited to attend.

When:
Thursday, May 12, 2005, 6:30–8:30pm

Where:
Rockefeller Center, 610 Fifth Avenue, New York, NY

Cocktails and hors d’oeuvres will be provided and 20% of all store sales that evening will be donated to Project Inform. For more details on the event and the NYC Hosts go here.

Elizabeth Taylor Gives $50,000 in Honor of Project Inform’s 20th Anniversary

The Elizabeth Taylor AIDS Foundation has awarded $50,000 to Project Inform in honor of the organization’s 20-year legacy of national leadership in HIV/AIDS research and treatment information, advocacy, and related public policy initiatives.

“Hope is what we so desperately need,” Elizabeth Taylor said. “We owe it to those who are sick just as we owe them effective treatments, compassion and support. We also owe them a decent country where no one will lack the knowledge and the power to make informed medical treatment decisions. We owe them medicines, healthcare, food and a roof over their heads because they have HIV disease,” she continued. “Until we reach that day when we can say we have achieved all that our work will not be done.”

Calling Elizabeth Taylor a true hero to all who have been fighting on behalf of people living with HIV and AIDS over the years, Project Inform Founding Director Martin Delaney also commended her for getting involved while others stood on the sidelines. “She recognized the significance of the epidemic from the beginning, and threw herself into the fight long before it was fashionable—or even acceptable in many circles—to do so,” remarked Delaney. “The depth and breadth of her contributions to making the world a better place for people living with AIDS have been extraordinary, and we are deeply grateful to her for recognizing the importance of Project Inform’s work.”

Project Inform Milestones

In recognition to all those who have demonstrated outstanding leadership and support of Project Inform’s accomplishments over the last 20 years, Project Inform has published “Project Inform at Twenty: Milestones of Project Inform and the Epidemic Since 1985”.

Available online, this publication chronicles our many contributions in the fight against AIDS. If you would like a printed copy, contact Julie Doherty at 415-558-8669 x223.

Calling all cyclists!

Join Us for the 11th Annual Ron Wilmot Bike Ride for Project Inform
On Saturday, May 7, 2005, cyclists, families and friends will band together for an energizing seven-mile ride through Golden Gate Park in San Francisco . The Bike Ride is named for its founder, Ron Wilmot, who was an avid cyclist and community leader. Many of Ron’s family and friends continue to ride to honor his memory, and to carry on his legacy of activism. Community leaders like Zephyr Real Estate, Kaiser Permanente, GAP, Leadership San Francisco and Different Spokes San Francisco will join forces to help make this year’s event a success.

You don’t have to cycle halfway ’round the world to change it. This fun ride is designed so that virtually anyone can easily participate. Ron was himself living with AIDS when he created the ride, and he knew that regular exercise and informed treatment decisions improved his longevity and quality of life. And although Ron lost his own fight with AIDS in 1997, the fundraising he pioneered goes on. Ron demonstrated the impact each of us can make in altering the course of the AIDS epidemic.

Brian Whitford, a Project Inform volunteer and Board member, is leading the charge this year by rallying others to join him as a cyclist. “I can’t think of a better way to help out Project Inform … It’s a fun day on my bike in our beautiful park with lots of great people, and I really like the fact that we can directly support the great work I see as a volunteer on the hotline and as a board member. HIV-positive folks like me are so lucky to benefit so much from Project Inform’s advocacy efforts. These events are the least I can do … and they’re a blast!”

It’s fun, it’s easy to participate, and you will have the satisfaction of knowing that more than 95 cents of every dollar raised will go directly to vital HIV/AIDS treatment information, vigorous advocacy and a message of hope to thousands of men and women around the country. That’s pretty powerful.

For more information, contact Julie Doherty at 415-558-8669 x223 or go here. We hope you can join us on May 7 for fun, for health and to support a good cause!

Ride For AIDS Resources (RideFAR) 9

September 7–11, 2005
Strong, independent and down-to-earth, this group of 25 intrepid cyclists band together every other autumn to cycle through the beautiful back roads of New England . Beginning in Provincetown just after Labor Day and completing with a benefit concert near Boston five days later, RideFAR offers the perfect opportunity for a dedicated circle of friends to support their favorite charities and make a meaningful difference while having fun.

Not many people know that RideFAR was one of the very first fundraising bike rides of its kind. Since its inception in 1989, thousands of individuals, businesses and communities have helped raise well over $600,000 for children and adults living with HIV, while increasing AIDS awareness in the towns along the ride’s 500-mile route. Because there are virtually no administrative costs, all of the money raised goes directly to grassroots organizations selected by the riders themselves.

RideFAR simply would not be possible without the resourcefulness and leadership of its founder and coordinator, Suzy Becker. The ultimate motivation coach, Suzy continues the tradition of this event with a great deal of energy and integrity, while rallying family and friends to aspire beyond their everyday limits.

For more information on how you can support this remarkable cycling event, or be involved as a crew member or rider, please contact Ride Coordinator Suzy Becker at suzybecker@earthlink.net.

Enroll for free and support Project Inform

eScrip and over 150 merchant partners nationwide have created a system that rewards customer loyalty by contributing a percentage of purchases to your charity of choice. You can register credit or debit cards, or even retail cards like Macy’s or Office Max, and a percentage of all your purchases will benefit Project Inform, at no cost to you. Our Group ID# is 500000941. Visit www.eScrip.com for more details.

Grassroots Advocacy Leads to Major Medicaid Victory

In the past few months, Project Inform has taken a leadership role in the fight to protect Medicaid for people with HIV/AIDS. This program, which serves 55% of people with HIV/AIDS and 90% of children living with AIDS, has been under attack over the past few years. Two years ago, the Bush Administration unsuccessfully proposed turning Medicaid from an entitlement program into a block grant. This year, the President suggested deep cuts in Medicaid spending as part of his plan to address the budget deficit.

The HIV Medicaid/Medicare Working Group, of which Project Inform is a steering committee member, launched a major grassroots advocacy campaign immediately after the release of the President’s proposed budget. The Group organized a targeted lobby day in early February, bringing 21 people (providers and Medicaid consumers) from key states to meet directly with their elected representatives and urge them to oppose any cuts or harmful changes to Medicaid. The Group also coordinated a sign-on letter, with nearly 300 organizations stating their opposition to the cuts.

These efforts, along with similar campaigns from healthcare advocates across the country, led to one of our biggest legislative victories in years. On March 17, the U.S. Senate voted 52–48 in support of an amendment by Senators Gordon Smith (R-OR) and Jeff Bingaman (D-NM) that removed the Medicaid cuts in the Senate version of the budget resolution and reserved funds to establish a bipartisan commission to identify ways to improve the program. Interestingly, all of the seven Republican Senators who broke ranks with their leadership and supported the amendment were from states with participation in the working group’s lobby day.

The battle is far from over, as the House of Representatives’ version of the budget resolution contains Medicaid cuts, so a compromise will need to be reached. However, the statement made by the Senate is loud and clear: the budget is not to be balanced by limiting access to lifesaving care and treatment for the nation’s most vulnerable people.

Project Inform and the working group will continue to advocate against cuts to Medicaid as the process continues. To make sure your voice is heard, join Project Inform’s Treatment Action Network (TAN) to receive Alerts and updates on this and other important policy issues. To join TAN, go here.

Project Inform @ 20 Donors

Inspirational Circle
MAC Viva Glam Roche/Trimeris
Elizabeth Taylor AIDS Foundation Debbie & Andrew Rachleff

 

Visionary Circle
Richard Weiland
Investors’ Circle
Merck & Co., Inc.

 

Empowerment Circle
Donald Colburn & Kathy Keenan
Sakurako & William Fisher
William McHenry
Swig Family Foundation

 

Advocate
Frank Ching & Charley Kearns
Donald Davis, MD
Tamara Fritz
Joseph R. Garrett & John Lomibao
Thomas Hoberman
Karen Kaye Smith-McCune & J. Michael McCune
Kat Taylor & Tom Steyer
Joan van Ark & John Marshall
Dede Wilsey

 

Supporter
Annette Brands & Lokelani Devone
Doris & Don Fisher
Robert James Frascino, MD &
Steven Natterstad, MD
Matt Fust & Stephen Leech
Gill Foundation
Michael Jon Gray & Michael Salstein
Karen E. Hartwig
Ambassador James C. Hormel & Timothy C. Wu
Scott Murray & Mihail Lari
Jim O’Donnell, MD & Michael Ginther
Laura King Pfaff & Rick Pfaff
Joseph Rosenthal
David B. Singer & Diana E. Kapp
Leslie & Pat Wood

 

Presenter
Stephen Becker, MD
S.C. Andrew Chen, MD
David Costa & Gary Furlong
Randi & Bob Fisher
Maryanna Haskins
Peter Fritz & Steven Hornbuckle
Allen Schuh
Adrian Tyler
Worldware

 

Partner
Anonymous
Keith Ashburn
Jeffrey Baker
Al Baum
James Bowler
Patrick Brennan
Robert Clausen & Randy Spriggs
Martin Delaney
Pam Roberts & Mark Dickey
Dagmar & Ray Dolby
Eastman Family Fund
Laura & John Fisher
Duncan R. Fuller
Robin Quist Gates & Milo T. Gates
JoAnne Powell & Ed Grammens
Katie Hall & Tom Knutsen
Rev. Harry & Marilyn Isler Brunger
Cathie & Franklin Johnson, Jr.
Gina & Rich Kelley
Donald Kirkorian, PhD & William Lewis
Steve Lew & Steve Bromer, MD
Michael S. Meldman
Pam & Ted Mondale
Jay Morton
Joyce Newstat & Susan Lowenberg
Northern California Rainbow Divers
Lisa & John Pritzker
Genelle Relfe
Douglas Schmidt & Stephen Martin
Joel & Albert Schreck
Carol & Richard Selsted
Doug Shader
Mr. & Mrs. Richard Silvey
Tony Sowry & Kevin Davis
Michael Tilson Thomas & Joshua Robison
George D. Tuttle & F. Bennett Cushman, II
Mrs. Patricia F. Wilmot

 

Host Committee
Anonymous • Beverly & Jeff Albrecht • Troy Barber • Eileen Blumenthal & Pat Dunn • Patti Brown • Bebe & James Burke • Diane & Michael Cenko • Richard Cohen • Daniel Conlin, MD • Harvey Darnell • Judy & Chuck DeHont • Carmel & Christopher Delaney • Margaret & Reid Dennis • Samuel Douglass & Luis Suarez • Randall Drain • Robert Elkins & Mark Hoyer • Peter Elting & Wes Freas • John Fernandes & Kevin McSpadden • Jim Fisher & Eric Guerin • Mary D. Fisher • Maureen E. Flauerty, MD • Robert Flory • Trish Fogerty-Regalado • Roy A. Folger • Sarah Folger & Robert Lloyd • Jeffrey Fraenkel & Alan Mark • Dale Freeman • Brenda & Thomas Freiberg • Jeff Friant & John Nelson • Paul Gabel & Michael Mendiola • Mary Jane & Robert C. Gallo, MD • Gail Gilkey & Martin Weinstock • Nicole Gisele • Steven Greenberg • Judy & Walter Grodahl, III • Akir Gutierrez • Alex Ham • Robert L. Hunt • Timothy Jackson, RN • Jeffrey Janowitz & Art Zabala • Peggy Johnston & Sarah Temple • Annette & Chop Keenan • Shirley & Ryland Kelley • Katherine Klein & John Gomperts • Katherine D. Knoop • Susan E. Krauter, MD • Jean & L.W. Lane, Jr. • Liz & Cort Larned • The Hon. Mark Leno • Elizabeth & John Lewis • Frank Lorah • Timothy F. Marks & Suzanne Tucker • Joseph J. Martinez, III & Jim Bohling • Ms. K. Ira Polcyn McEvoy • Padric Meagher & Michael Guy • Richard Meyerson • Kate Minott • Stephen E. Moore • Eileen Moran & Fredric Van Rheenen • Jan Olsen & Teresa Kangas-Olsen • Kenneth W. Pearce • Tim Petty & Robert Van der Leest, MD • Rachel & Jim Piermarini • Kathy & Robert Piziali • Mark Reisman • Walter Rieman • Terry Rife & Ray Chan • Roger Ritland • Gerald B. Rosenstein, MD • Deborah N. Rush • Melanie & T.J. Ryan • Dorian Sarris • Barbara & Lewis Schaffel • Christine & Charlie Schreck • David Schwab • Sydney Sharples • Lydia & Doug Shorenstein • Stephen Sims • Robert & Elaine Sloss • Nancy & Homer Steiny • Susan Sternau & Nancy Welsh • Tom Teasley • Tenderloin Neighborhood Development Corp. • David Thomson • Lorna Thornton & David Sheaffer • Mrs. Anita Weissberg • Brian Whitford