In Focus #23: July 2007

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Project Inform Launches Hepatitis Advocacy Effort

There are more than 6 million Americans living with chronic hepatitis C and/or hepatitis B including at least 225,000 people with hepatitis C who are co-infected with HIV. Most Americans living with hepatitis C are unaware of their infection.

Yet even in the face of these statistics, the federal government has shown little leadership in the fight against hepatitis. Despite numerous requests from advocates and health officials, President Bush failed to officially recognize May as “National Hepatitis Awareness Month.” Funding for viral hepatitis testing and education programs has remained flat for several years, and legislation to establish a comprehensive plan to address the epidemic has stalled.

Because so many people with HIV/AIDS are coinfected with hepatitis C and/or B, Project Inform recently expanded its health care policy agenda to include federal hepatitis advocacy by joining the Hepatitis C Appropriations Partnership (HCAP), a national coalition of hepatitis and HIV advocates, state hepatitis directors, and pharmaceutical representatives. The coalition focuses on increased hepatitis funding and the “Hepatitis C Epidemic Control and Prevention Act,” a bill that would establish a comprehensive federal hepatitis C research and prevention program.

Over the next several months, Project Inform will work with other HCAP members to help build a strong and vibrant national hepatitis grassroots network that will provide a common voice across the country on the need for adequate funding and legislation to combat hepatitis, while allowing advocates to share information and strategies with one another about state-level campaigns. We know from years of HIV/ AIDS grassroots organizing that government takes action when those most affected communicate with their own elected representatives through phone calls, letters, emails, and legislative visits.

Project Inform has already begun sending Action Alerts and policy updates about federal hepatitis issues to members of its national grassroots network, PI Action. We will also encourage PI Action members to become involved with the new hepatitis network as it develops. If you are interested in being a part of this effort, please join PI Action.

Michael Allerton President, Board of Directors

Dear Project Inform Supporter:

I am pleased to welcome you to this 23rd issue of In Focus, Project Inform’s organizational newsletter.

This edition reaches you at yet another exciting and pivotal moment in the history of the HIV/AIDS epidemic. More than ever, we are proactively forming and maintaining coalitions to push our agenda forward in state and national legislatures. Daily, we are meeting the needs of people with HIV/AIDS on our National HIV/AIDS Treatment Information Hotline. And we are reaching thousands more constituents through our website, PI Action Updates and Town Meeting Updates on an ongoing basis.

Also, I am proud to announce the newest addition to the Project Inform Board of Directors, Amy Lovell. Elected to the position of Vice President on June 18, Amy is currently employed at Wells Fargo as Senior Counsel. She received her B.A. from Yale University and her J.D. from the University of California at Berkeley, where she earned the Prosser Award for Federal Criminal Law and Labor Law.

We are excited and honored to have Amy as part of our team!

In this issue you will read about an incredibly motivated group of middle school students who, out of concern for their classmates and community, organized a week-long health awareness event which benefited Project Inform. You will also learn about our new Hepatitis C coalition, an important new area for us to expand into since so many people with HIV are struggling with this co-infection, and the recent transition of Brenda Lein, a long time employee of Project Inform.

As Treatment Advocate Paul Dalton mentioned in our recent Hotline Operator training (see story on page 5), the goal of antiretroviral medications is to improve the quality of life of all individuals with HIV/AIDS. That sums up Project Inform’s approach to our mission to provide information, advocacy and inspiration to people living with HIV/AIDS and their health care providers.

Thank you for your continued commitment to Project Inform. I hope you will enjoy reading about our work—and that this issue will inspire you to continue working with us to create change in the HIV/AIDS community nationwide.

Sincerely, Michael Allerton Chair, Project Inform Board of Directors

Middle School Student Council Touches Our Hearts

A surprisingly simple act of inspiration occurred in the country’s heartland early this spring. For an entire week, over 1,200 young hearts and minds in St. Charles, Ill. aligned with Project Inform’s mission, without our knowledge or participation.

The Student Council of Wredling Middle School in St. Charles organized a week of disease awareness activities for the student body that culminated in a fundraising Walk-a- Thon. Project Inform received a check for $1,437 last month – the hard-earned fruits of several Walk-a-Thon teams’ efforts.

“The Student Council members sponsored the Walk,” said Wredling Student Council Advisor and sixth grade teacher Ellen Dial. “They really wanted to give back to their community.”

The Walk-a-Thon capped off the middle school’s “Week of Life,” devised by the Student Council to “heighten health awareness and help students make healthy lifestyle choices.” During the week of April 16, the students learned about a different disease each day—diabetes, heart disease, cancer and HIV/AIDS—by watching prepared videos and listening to public service announcements created by Student Council members.

And on Friday, April 20, all 1,200 Wredling Middle School students participated in a fundraising Walk-a-Thon during their gym classes, many wearing red to raise HIV/ AIDS awareness.

Project Inform graciously accepted the Walk-a-Thon’s HIV/AIDS proceeds and immediately applauded the creativity and candor of the budding young community activists at Wredling Middle School. We are inspired by their ingenuity, energy and resourcefulness.

Thank you to Wredling Student Council sponsors Ellen Dial and Alicia Honnert for helping their students reach their goals.

For information on how you can organize an event in your hometown to benefit Project Inform, call our Senior Development Associate, Dwayne Alicie, at 415-558-8669, x 227.

In the Foundation Spotlight ...

KAISER PERMANENTE
Kaiser Permanente has supported Project Inform since 1997, and most recently granted $50,000 to fund the unique Integrated Treatment Education Program. This generous grant will help Project Inform reach tens of thousands of individuals with HIV/AIDS and continue providing information, advocacy and inspiration for these individuals and their health care providers.

Project Inform is grateful for our ongoing and generous partnership with Kaiser Permanente, and thanks them for their commitment to the HIV/AIDS community.

JOHN M. LLOYD FOUNDATION
This year the John M. Lloyd Foundation granted $20,000 to Project Inform to address problems with the U.S. Medicare Part D, the new prescription drug benefit, that hinder low-income people with HIV from making full use of the benefit, and to promote increased funding for Title II of the Ryan White CARE Act.

This grant is the first from the John M. Lloyd Foundation to Project Inform, and we are excited to have the opportunity to partner with them to find solutions to pressing problems facing the HIV/AIDS community.

BROADWAY CARES/EQUITY FIGHTS AIDS (BC/EFA) In 2007, BC/EFA granted $20,000 to Project Inform to fund advocacy work. Project Inform has received grants from BC/EFA since 1995 totaling more than $208,000 in the past 12 years. Many thanks to BC/EFA for such an inspiring and sustained commitment to our mission to provide information, advocacy and inspiration to people living with HIV/AIDS.

Project Inform’s State-Level Health Care Advocacy Helps People with HIV/AIDS Locally and Across the Country

The importance of state-level advocacy cannot be underestimated. Funding decisions and broad parameters for the three largest federal payers of HIV care— Medicaid, Medicare, and the Ryan White Program—are made at the federal level. However, many, if not most, decisions are made at the state level, such as the actual benefits provided by the programs, some eligibility criteria for beneficiaries, and the amount of state money invested in the programs. In order to ensure quality coverage, advocates must work at both the state and federal levels.

Project Inform has long been active in health care policy at the national level and also at the California state level. Our involvement with state health care policy gives us a more complete view of the real problems people with HIV face as they try to access quality, affordable health care, lets us assist individuals locally in gaining access to care and treatment, and brings systemic problems to light so that we can better advocate for solutions at the federal level. In addition, protecting, strengthening, and building better state health care programs helps us to share ideas, strategies, and solutions with advocates in other states. States often lead the federal government in providing strong, quality health care programs, and advocating at the California state level allows us to help shape good examples of how to provide quality, accessible, and affordable HIV care throughout the country.

Some examples of how Project Inform and its partners have helped Californians through state level advocacy include policies and funding that have created a strong AIDS Drug Assistance Program (ADAP) and resulted in savings in the last fiscal year that could be used for other important HIV care programs; successfully advocating for a state program to pay Medicare premiums for people with HIV/ AIDS; promoting the development of the Therapeutic Monitoring Program, which pays for viral load and resistance assays for those who couldn’t otherwise afford them; and advocating for financial assistance to cities and counties that lost funding under the newly authorized Ryan White Program.

If you are interested in Project Inform’s state-level advocacy—or if you would like assistance with getting involved in health care policy in your state—contact Anne Donnelly at adonnelly@projectinform.org.

Fresh Off The Hotline

Recent calls fielded by the highly trained Hotline operators at Project Inform:

• A North Carolina case manager looking for HIV/AIDS services near Wilmington, Delaware, for a young woman about to move there for school.
• A South Florida wife who, because of stigma, doesn’t have anyone but Project Inform to talk to about her husband’s HIV status and the way his body shape is changing.
• A British citizen not bilingual in Spanish but living in Central America with a new HIV diagnosis with questions about seeking care in nearby English-speaking Belize rather than flying to London periodically, as he had no one to translate for him at the local clinic.
• A southern California daughter-in-law of a senior citizen who has been paying out-of-pocket for the elder’s HIV antiretroviral medications. Neither was aware of the AIDS Drug Assistance Program to assist with the financial burden and in discussion, we realized that the positive person was only seeing a general practitioner for treatment and not a specialist.
• An HIV-positive prisoner with wasting syndrome asking for information regarding his condition as well as interactions between psychotropic meds and his HIV meds and referrals for case management after his release.

New Volunteers Trained for National HIV/AIDS
Treatment Information Hotline

	Volunteer Hotline Operator Richard shares a laugh with Administrative Director Glen Tanking and Interim Development Director Brenda Laribee.

In June, Project Inform held its spring training for new volunteer operators to staff the National HIV/AIDS Treatment Information Hotline. The new operators will join the ranks of eight other highly trained operators who answer daily calls from people in need of up-to-date and unbiased information about HIV and its treatment.

As part of the extensive twopart training, Anne Donnelly and Ryan Clary spoke about their work as Project Inform’s advocacy team. Martin Delaney, Founding Director, talked about the history and direction of the organization, including some recent successes. Veteran hotline operator Glenn Reeder shared with the group some of his experiences over the eight years he’s been volunteering.

Brenda Lein, Director of Project Inform’s Project Immune Restoration, presented a detailed explanation of the immune pathogenesis of HIV, or the science and theories of how the virus affects and interacts with the immune system.

Underscoring Project Inform’s mission to provide hope over despair and offering a perspective on the most important information to give callers, Treatment Advocate Paul Dalton reminded the new operators that the number one factor affecting whether or not a person lives a long time with HIV is simply the belief that one can live well with HIV. The next most important thing persons with HIV can do to enhance their experience is to forge a working relationship with their doctors. “Each choice affects later options,” Paul said, explaining that the power of this step in determining one’s own fate cannot be underestimated.

Judy Leahy, MPH, wrapped up the training with a presentation on issues related to HIV that are specific to women, including the differences in the “big picture” profiles of HIVpositive men and women. Women are generally diagnosed later, typically seek and use anti-HIV medicines earlier and may have better survival rates than their male counterparts—affecting the type of service operators may need to provide women callers on the Hotline.

The newly trained operators will now sit in with experienced operators and shadow several live calls on the hotline before fielding their first call on their own under the supervision of the Hotline Manager, Jonathan Goldman.

The Project Inform National HIV/ AIDS Treatment Information Hotline operators can be reached at (800) 822-7422, Monday-Friday, 10am-4pm PST. For more information about how you can volunteer to be a Hotline Operator, contact Jonathan Goldman at 415-558-8669, x215.

Project Inform Honors Volunteers

	Hotline Manager jonathan Goldman, Volunteer Hotline Operator joe and Executive Assistant Skip Emerson

Project Inform honored its dedicated stable of volunteers with a reception and raffle on June 18. Staff, board and volunteers nibbled on hors d’oeuvres, mingled and admired the view of the Oakland hills from Davies Medical Center in San Francisco.

Volunteers are a pivotal part of Project Inform’s team. These dedicated people staff the National HIV/AIDS Treatment Information Hotline, help produce events and assist around the office. Every day they are living and personifying Project Inform’s mission to provide information, advocacy and inspiration to people living with HIV/AIDS.

Project Inform extends a hearty thank you to all the men and women who are committed to helping us fulfill our mission.

Thank You Brenda Lein!

	Brenda Lein

Project Inform salutes Brenda Lein, Director of Project Inform’s Project Immune Restoration, for her countless contributions to helping inform, advocate for and inspire thousands of people around the country. After 16 years at the helm of one of this country’s most influential community-based HIV health care and treatment information and advocacy organizations, Brenda is stepping down to pursue the next chapter of her life.

Over the years, Brenda has participated in and directed advocacy efforts on issues such as immune-based therapies, therapeutic vaccines and novel anti-HIV approaches, including gene therapy and other molecular concepts to managing HIV. Through Project Immune Restoration and several Immune Restoration Think Tanks, Brenda helped Project Inform bring together renowned scientists and clinicians to develop new strategies and studies with an emphasis on issues facing people with advanced-stage HIV disease. Brenda’s work also encouraged scientific and institutional collaborations, helped to create new drug research models and influenced access to experimental anti-HIV therapies. Brenda also regularly contributed to Project Inform’s large collection of HIV treatment information, including PI Perspective, and educated people living with HIV and their providers about the immune system, HIV and immune therapies at a variety of educational forums throughout the country.

In addition, Brenda has served on state and national AIDS-related boards and advisory groups, including: the National Institutes of Health’s (NIH) Office of AIDS Research Levine Panel subcommittee of drug development, the Medical Advisory Panel for the California State Office of AIDS’ AIDS Drug Assistance Program, the Community Constituency Group of the NIH’s AIDS Clinical Trial Group, and the NIAID Division of AIDS’ AIDS Research Advisory Committee.

Brenda will continue to help the broader HIV community as board member of the Foundation for AIDS and Immune Research (FAIR) and through independent projects. Project Inform wishes Brenda all the best in her future endeavors.

Innovative New Think Tank Planned

Highly Active Anti-Retroviral Therapy (HAART) has brought tremendous gains for people living with HIV/AIDS. But the high cost of treatment and the very real limitations of current therapies (including side effects and resistance) highlight the need to find HIV treatment that is more effective, less harmful, and less expensive.

In response, Project Inform, in partnership with the Forum for Collaborative AIDS Research, is developing a promising and exciting think-tank style meeting, “HAART 2.0,” that will bring together some of the most important researchers, HIV physicians, community activists, and representatives from the pharmaceutical industry, with a goal of building on the successes of current anti-HIV drug treatment and fostering a new, more successful paradigm for the treatment of HIV/ AIDS.

HAART 2.0 comes at a time of tremendous progress and hope in the treatment of HIV/AIDS. New types of anti-HIV drugs like oral entry inhibitors and integrase inhibitors, along with improvements in the use and quality of some of the older types of drugs like protease inhibitors, have opened up the possibility to begin rethinking the way HIV/AIDS is treated.

To fully realize the potential of many of these new therapies, solid science must drive the process. HAART 2.0 will build on the successes of similar think tanks and meetings that Project Inform has led throughout the history of the epidemic on subjects such as immune based therapies and structured treatment interruptions. Working with our partners at the Forum, we have gathered together an impressive list of leading doctors and research scientists to construct the think tank’s agenda and put together the program.

HAART 2.0 should result in solid recommendations to shape future research. HAART 2.0 is a great example of Project Inform in action. Our long-standing relationships with researchers, doctors, community activists, and industry are built on a solid foundation of objectivity and integrity. These relationships make Project Inform uniquely positioned to bring together the key stakeholders necessary to move toward a new era in the treatment of HIV/AIDS. We see HAART 2.0 as a vital building block toward the ultimate goal of all of our work: an end to HIV/AIDS epidemic.

Update Town Meeting: Rochester, NY

On a warm June evening earlier this year, two dozen people gathered in the basement of one of the oldest churches in Rochester, New York, a mid-sized city with a significant HIV/AIDS epidemic and a robust community response to it, for a Project Inform Update Town Meeting on the latest HIV/AIDS care and treatment information. The audience—which included people living with HIV/ AIDS; staff members from AIDS Community Health Center (ACHC), Rochester’s local HIV agency; and other community members—listened to a wide-ranging talk that covered microbicides, prevention efforts among African Americans, news from the most recent Conference on Retroviruses and Opportunistic Infections, and breakthroughs in the treatment of drug-resistant HIV, followed by a lively question and answer session.

The Rochester Update Town Meeting, like many others that Project Inform holds each year, was part of Project Inform’s ongoing efforts to bring HIV treatment information directly to people around the country in a community format. Paul Dalton, Project Inform’s Treatment and Research Advocate, shared the stage with Dr. Michael Mancenido, a staff clinician with ACHC, which also sponsored the meeting. ACHC offers a wide range of services including primary health care, mental health, clinical trials, case management, pharmacy, and substance abuse services, and is a fantastic working model of a thoughtful and comprehensive approach to meeting the needs of people living with HIV/AIDS.

Project Inform and ACHC were both very pleased with the success of this first-ever Update Town Meeting in Western New York, and Project Inform plans to hold several more Update Town Meetings throughout the U.S. over the next 12 months. Our Update Town Meetings program allows us not only to speak to our constituents, but also to listen to their thoughts, concerns, and issues, and ensure that our advocacy work truly represents the voice of people living with HIV/AIDS.

Thank You for Another Succcessful AIDS Walk!

A special thank you to all the team members and donors who helped propel AIDS Walk 2007 toward success on July 15. Project Inform was a beneficiary of the 2007 AIDS Walk and also qualified for the Community Partners Program, which allows 100% of the funds raised by staff and new team members to directly support the organization. Many thanks to all who contributed towards another successful year!

Thank you for 13 Great Years!

Final Ron Wilmot Bike Ride and Wellness Day
Concludes on a High Note

	Mickey, jenny, Dave and Pam Perillo with Ron’s mother, Patricia Wilmot, and Alex Ingersoll.

On May 12, 2007, sixty Project Inform supporters gathered in Golden Gate Park’s Peacock Meadow to celebrate the 13th and final Ron Wilmot Bike Ride and Wellness Day. Under a bright sunny sky, participants came together with Ron’s family to remember Ron and make one last seven mile ride through the park—raising $25,000 to support Project Inform’s vital programs.

In his remarks to the group, Board Chair Michael Allerton discussed the changing face of the epidemic and the changes in strategy which must accompany the changing times. “After careful consideration, the Project Inform Board of Directors has decided that this year’s event will be the final Ron Wilmot Bike Ride. As the course of the HIV/AIDS epidemic shifts, Project Inform’s strategies for raising funds to meet the needs of our constituents and community must adapt and rise up to meet new challenges,” he said.

Over the past 13 years, the Ride has raised more than $800,000.

Michael acknowledged Ron’s family including his sister, Pam Perillo, and mother, Pat Wilmot, who have flown to San Francisco from Illinois to take part in the event each year, and presented them with flowers, wishing them a happy Mother’s Day.

California State Assemblyman Mark Leno attended the event as he has every year, bringing with him a proclamation honoring Ron and his family for their extraordinary efforts.

Allerton also acknowledged the hard work and dedication of the key fundraisers and participants in the Ride over the past 13 years, including Alex Ingersoll and Martin Tannenbaum, Deborah Udin, Jim O’Donnell and San Francisco cycling team Different Spokes.

	Participants pause for a moment before the launch of the final Ron Wilmot Bike Ride and Wellness Day.

The attendees enjoyed a breakfast of donuts, bagels and bananas donated by Krispy Kreme, Noah’s Bagels and Buffalo Whole Foods. Pasta Pomodoro and Safeway donated lunch and Cal-Mart capped off the afternoon with It’s It ice cream bars.

The ride was started in 1994 by Ron Wilmot, an avid cyclist and Project Inform supporter. After benefiting directly from the information that Project Inform provided, he organized the Ride and raised $100,000 in the Ride’s first two years alone. Before he died of AIDS in 1997, Ron asked that the event continue as a way to encourage people who are infected with or affected by HIV/ AIDS to become involved with Project Inform and learn how they can improve their health—or the health of someone they care about—by educating themselves about the disease.

Project Inform will continue to honor the dedication of Ron Wilmot and his family through its programs, and will recognize the Wilmot and Perillo families and Bike Ride supporters at this year’s Evening of Hope gala on October 24, 2007, at the Fort Mason Officer’s Club in San Francisco.

Ways to support Project Inform’s mission:

• Consider leaving a portion of your estate to Project Inform. Contact Brenda Laribee at 415.558.8669 x211 for more information.
• Set up a recurring monthly gift to be deducted from your credit or debit card. Contact Dwayne Alicie at 415.558.8669 x227 for more information.
• Sign up for PI Action and let your legislators know you are concerned about HIV/AIDS issues.
• Encourage a friend to visit www. projectinform.org and make a donation online.
• Shop Under One Roof—549 Castro Street, San Francisco, CA. A portion of the proceeds reaches Project Inform and other AIDS service organizations.
• Shop or donate items to Community Thrift—623 Valencia Street, San Francisco, CA. Reference #18 when donating. A portion of the proceeds from items you donate reaches Project Inform.
• If your company has a matching gift program, be sure to send us the paperwork necessary to double your donation.