In Focus #24: January 2008

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Project Inform Welcomes
New Executive Director, Dana Van Gorder

In mid-October, the Project Inform Board of Directors announced that Dana Van Gorder had accepted an offer to join the Project
Inform team as Executive Director. This announcement came in conjunction with Martin Delaney’s decision to move from his
leadership post as Founding Director into a consulting role after 23 years at the helm of the organization. Dana started in this new post on November 15th.

Karen Hartwig, Scott Miller, Dana Van Gorder, Michael Allerton, Deb Doyle, Mike Horak and Ray Brizendine at Evening of Hope, October 24, 2007.

Dana worked most recently as Director of State & Local Policy at the San Francisco AIDS Foundation (SFAF). He is no stranger to Project Inform, having collaborated for the past several years with our staff to assure that California’s Legislature and Governor increase funding for vital HIV/AIDS programs and that California’s laws assure the best possible response to the epidemic. Prior to his work at the SFAF, he was the Coordinator of Lesbian & Gay Health Services for the San Francisco Department of Public Health. He is also one of the founders of the San Francisco Lesbian, Gay, Bisexual, Transgender Community Center and a former aide to San Francisco Supervisors Harry Britt and Carole Migden.

“I am deeply honored and excited to take this post in an agency for which I have so much respect,” said Dana. “Project Inform has made and continues to make an heroic contribution to ending the epidemic. I clearly remember the electrifying, courageous and effective work Marty Delaney and Project Inform led in the 80s to provide hope for treating AIDS. In the 90s, this agency set the gold standard for thoughtful, well-informed advocacy and information. Project Inform does not currently get the attention and credit it deserves for the quality and impact of its HIV treatment information, treatment advocacy and public policy work.”

For the last 23 years, Martin Delaney has provided pioneering and essential leadership of efforts to assure the availability and affordability of effective medications to treat HIV, as well as sound treatment information to hundreds of thousands of HIV-positive people nationally and internationally.

“Dana’s hiring concludes a long-planned and orderly transition for myself and Project Inform,” Delaney said. “Our goal is to keep the spirit and mission of Project Inform alive while opening the door to new ideas and renewed energy. I will leave my employment with Project Inform on January 1, but remain available as a key consultant to assist the agency in ways that Dana and I identify. My priority is to pass on and preserve the productive relationships Project Inform has built over the last 23 years with scientists, industry and government officials. I will continue to work in the field of HIV treatment and research advocacy, but in new ways that complement and support the work of Project Inform without duplication. As I move along toward my full retirement from consulting in future years, I am confident that I am leaving the agency in the hands of a capable leader who shares the passionate commitment that has been demonstrated by Project Inform staff and volunteers for more than two decades.”

Michael Allerton, Chair of Project Inform’s Board of Directors, said, “In my experience, I’ve seen that when organizations make the transition from the leadership of a founder to a new generation of leadership, it can be a time of risk. In Project Inform’s case, however, the Board has thoughtfully planned for the agency’s evolution. Armed with Dana’s enthusiasm and experience in HIV, our highly professional and dedicated staff and volunteers, and Martin’s commitment to our ongoing success, I see a bright future for Project Inform. I am extremely honored and excited to be a part of this organization at this critical juncture in its history.” In the coming months, Project Inform’s supporters can look forward to hearing more from Dana as he settles in and Project Inform refines its plans to meet the changing needs of its constituents and the epidemic.

Michael Allerton President, Board of Directors

Letter from the Board Chair

Dear Project Inform Supporter:

What a promising year 2008 is shaping up to be for Project Inform and for the response to HIV/AIDS!

As I welcome you to this 24th issue of InFocus, I look back on 2007 with enormous pride in our work. Two important new antiretrovirals were approved by the FDA, and Project Inform played a key role in assuring their affordability and in providing community education regarding their use. Paul Dalton, our Director of Treatment Information & Advocacy, served on the expert panel that revised federal treatment guidelines to encourage earlier treatment of HIV infection. Our policy department joined other advocates in a much needed effort to strengthen the nation’s response to the hepatitis C epidemic, which affects fully 25 percent of HIV-positive people. We advocated for improvements to the Medicare prescription drug benefit for people with HIV/AIDS, educated the community about changes to the program, and helped individuals navigate this complex benefit. And Project Inform trained a new generation of volunteers to strengthen our Treatment Information Hotline—the only telephone-based source for HIV treatment information nationally.

2008 will be another year of leadership for us. Project Inform will bring together treatment experts for a meeting called “HAART 2.0.” The goal of this conference is to provide updated guidance about how to combine the growing list of available HIV medications to more effectively treat HIV with fewer side-effects. We will actively support the exciting efforts of researchers looking to identify a cure for HIV by pursuing strategies to eliminate reservoirs of the virus that current drugs, while immensely successful, cannot reach. Project Inform will help lead discussions in Washington and Sacramento to assure that any effort to reform health care fully addresses the needs of people living with and at risk for HIV. And our Hotline will add staff to expand our current efforts to provide lifesaving treatment information to communities of color.

2007 also brought a significant change in Project Inform’s own leadership. Although we say goodbye to our brilliant Founder, Martin Delaney, in his role as an employee, he remains with us as a consultant for two years to provide strategic support. And we welcome an energetic and visionary new Executive Director, Dana Van Gorder, who has made his own great contributions to ending this epidemic since 1981.

We are so grateful for your trust, and look forward to your continued support as Project Inform works to meet our shared dream of ending the tragedy of HIV.

My Best,

Michael Allerton
Chair, Project Inform Board of Directors

Dana Van Gorder Executive Director

Letter from the Executive Director

It is a great honor and joy to join Project Inform as its Executive Director. My respect for this agency goes back to its earliest days. In 1981, I went to work as an Aide to San Francisco Supervisor Harry Britt and, only shortly thereafter, it became necessary for us to build the City’s early response to the unfolding tragedy of AIDS. Only a few years later, we were called upon to lead the effort against three California ballot measures calling for quarantine and public reporting of the names of HIV-positive people. Simultaneously, under Martin Delaney’s brilliant and visionary leadership, Project Inform emerged as a scrappy and effective national leader, stimulating research and trials—even smuggling treatments into the country that might provide some hope of alleviating the immense suffering caused by this disease. I vividly remember how electrifying that work was!

Throughout the 1990s, I helped plan two International AIDS Conferences and worked extensively to encourage a new generation of HIV prevention for gay men. During this time, Project Inform built its reputation for brilliant advocacy to successfully press for an increasingly effective and accessible arsenal of antiretrovirals, and supported HIVpositive people and medical providers to make informed decisions about their use. Marty Delaney transformed the way in which the FDA approves new medications—not just to benefit HIV, but many other diseases.

And since 2000, in my role as State Policy Director for the San Francisco AIDS Foundation, I have worked side-by-side with the highly-respected staff of Project Inform’s Public Policy Department, which has played a unique and pivotal role in assuring that state and national healthcare programs respond adequately to the needs of HIV-positive people.

My respect for Project Inform has only increased since my arrival at the agency in November. The impact this small agency has on the HIV epidemic is extraordinary. Our staff is deeply committed and works extremely hard. So many leaders in the HIV arena remind me of the unique and pivotal role Project Inform plays in assuring that new and affordable medications continue to become available to manage HIV infection, and even in helping meet the audacious goal of curing HIV disease. So many leaders also remind me of the critical role Project Inform plays in forging understanding and agreement among groups with competing federal HIV/AIDS funding needs in the current environment of growing patient loads but static resources. And so many people living with HIV remind me how the information and support they received from our treatment Hotline has saved their lives.

The past few months have been a time of great change for Project Inform. Our legendary Founder has left the staff to become a key consultant advising us on how best to meet the challenges of the future. We have transitioned from a three member leadership team to a more traditional structure led by an Executive Director, and reorganized staff o encourage their professional development and increase our effectiveness. We have moved to more pleasant but less costly office space. We are refining our existing programs while also considering a new set of activities that will assure we are having the greatest possible impact on the epidemic—filling gaps in the response to HIV while avoiding duplication of the efforts of other agencies. But our commitment to treatment advocacy, information, sound public policy and hope will not change.

With deep respect for its history, great admiration for its current work, and big dreams for its future, I thank each of our contributors, volunteers and supporters for your dedication to the success of this organization. I take the trust that has been placed in me with utmost seriousness and look forward to working with each of you to build on the great legacy established by Marty Delaney and Project Inform.

Please call me at 415.558.8669, or if you have any questions or thoughts for me. Best wishes for the new year ahead!

Warm regards,

Dana Van Gorder
Executive Director, Project Inform

ADAP Waiting Lists Are Eliminated,
But New Challenges Loom

Thanks to the leadership of Project Inform and the work of grassroots advocates around the country, waiting lists for the AIDS Drug Assistance Program (ADAP) have been eliminated in every state in the nation for the first time in 5 years. But the battle to ensure access to ADAP continues.

ADAPs provide HIV-related pharmaceuticals for low income people with HIV/AIDS who are uninsured or underinsured. For years, many people—ranging from a few hundred to almost 2,000 at a given time nationally— have been forced to wait for lifesaving HIV medications as their states struggled with insufficient funding and
rising demand for services.

Project Inform, along with its advocacy partners, played a leadership role in two key issues that resulted in the elimination of waiting lists late in 2007. We advocated strongly for the $75 million increase in Ryan White Part B funding that Congress approved earlier in the year, and with this increase, many states were able to bolster their ADAPs. We also helped secure a provision in the Ryan White reauthorization legislation that expanded the supplemental pool of ADAP funding for states with demonstrated need. Thanks to this change, the supplemental pool was increased to $39.4 million this year, which provided fourteen states and two territories with additional ADAP funds.

The tireless efforts of grassroots activists across the country played a huge role in the ADAP funding increase. In several states, people with HIV and their advocates succeeded in getting significant increases in state funding to help their ADAPs. In one example, a strong grassroots campaign by South Carolina advocates including rallies, legislative visits, and letter writing led to an unprecedented $4 million increase in ADAP funding in that state

But while the elimination of ADAP waiting lists is great news for those who now have access to medications, it does not mean the end of the ADAP funding crisis. Waiting lists are only one indicator that a state is having problems with its ADAP. In many states, people with HIV still encounter other barriers to treatment access, including strict eligibility requirements, insufficient drug formularies, capped enrollment, and medical restrictions.

In addition, the expansion of HIV testing across the country and new federal medical guidelines recommending earlier treatment of HIV are likely to increase the number of people accessing HIV treatments through ADAP. These changes make future funding increases vital.

Next year’s federal ADAP funding is likely to be far below need, and could result in further restrictions in many states. People affected by HIV will need to continue their advocacy to end the ADAP crisis. All positive people should have access to treatment regardless of ability to pay. To get involved, join Project Inform’s grassroots network, PI Action.

Direct from the Advocacy Office ...

‘Chuck,’ a California resident, was disenrolled from his Medicare Part D plan because he didn’t make the premium payments. He didn’t realize that he owed premium payments, and as soon as he found out, called the plan and arranged to pay the full back payment. Although he paid, the plan refused to re-enroll him. He was homebound and his friend and health assistant called Project Inform because he needed to enroll in a plan before ADAP could serve him. However, no plan would enroll him since he was outside the enrollment period. We were able to troubleshoot with CMS and get him re-enrolled in the original plan and on to the ADAP Medicare Premium Payment Program so that his premiums were covered. Sadly, this is the kind of call we receive frequently.

Project Inform Participates in
New Response Against HIV Denialism

HIV denialism, the belief that HIV either doesn’t exist or is harmless, has done a great deal of damage in South Africa. That country has faced unnecessary difficulty in mounting a fight against AIDS ever since its current President, Thabo Mbeki, discovered HIV denialism on the Internet. After reading the seemingly reasonable-sounding claims of the denialists, Mbeki invited them to South Africa to advise him on AIDS.

Yet these claims only sound reasonable if one avoids reading the amassed evidence of the harm done by HIV. In South Africa’s case, flirting with denialism delayed for years the distribution of antiretroviral drugs for treating individuals and for preventing mother-to-child transmission. The President and his health minister continue to spread distrust and confusion to this day.

However, South Africa is hardly the only place where this denialism exists. It is alive, though not well, in the U.S., Europe and Australia. While Project Inform has long been a leader in the fight against HIV denialism, the task is too important for any one organization.

In 2007, Project Inform helped to create an international website called AIDStruth.org which confronts the arguments of denialism, discloses the real credentials and activities of the denialists, and acts as a central clearinghouse for the facts about the role of HIV in AIDS. The site includes input from people in many major universities, government employees and community activists. Everyone involved contributes solely on a volunteer basis in this effort to draw the line against denialism.

In addition to working on many articles, blog clips and referrals, this team of people engages in vigorous email dialogues on how best to confront the challenges posed by denialists. In a recent example, AIDStruth members addressed a court case in Australia in which denialists, attempting to get a hearing for their irresponsible views, set out to prove that HIV is harmless. Our members built a powerful panel of expert witnesses who supplied accurate information on the role of HIV. The denialist arguments were soundly defeated in this important case.

In other recent activities, members confronted prominent denialists at their home bases, making sure their universities were aware that denialist views were being promoted on their letterheads and sometimes taught in their classrooms.

AIDStruth.org is a truly international effort, with members from throughout the U.S., Europe and several African countries. Project Inform is proud to play a role in the new AIDStruth.org web site and we invite you to visit the site, or to view anti-denialist articles at Project Inform’s own web site, www.projectinform.org.

Until There’s A Cure® Foundation
Supports Project Inform

Until There’s A Cure® Foundation (UTAC) is a national organization
dedicated to eradicating HIV/AIDS by raising awareness and funds to combat this pandemic.

UTAC was founded in 1993 by two California mothers who created
The Bracelet—a simple yet elegant symbol that serves as a bridge
uniting people to fight HIV/AIDS. The Bracelet is designed to
increase awareness and to help people recognize that anyone—man, woman, or child—can be infected, and that it is up to each of us to be compassionate, understanding, and responsible. Since it was introduced, 900,000 Bracelets have sold and more than $8 million has been raised for grants channeled toward HIV vaccine development, care services, and youth education.

Project Inform is grateful for UTAC’s support, including their latest $6,000 grant for Project Inform’s treatment education efforts. For more information on where you can buy The Bracelet, please visit the UTAC website at www.utac.org.

Academy of Friends Gala Will Benefit Project Inform

Academy of Friends (AOF) annually produces the world’s premier Academy Awards® Night Charity Gala as the centerpiece of its efforts to raise funds and encourage volunteerism for diverse HIV/AIDS care and prevention education organizations in the San Francisco Bay Area. Project Inform is one of AOF’s beneficiaries.

Providing an exemplary model of volunteerism and fundraising, AOF engages an ever-widening circle of friends and undertakes a concerted effort to expand its reach and broaden community awareness of and financial support for people affected by HIV/AIDS. Since its founding in 1980, AOF has distributed more than $6.5 million to more than sixty AIDS organizations in seven Bay Area counties. AOF is committed to continuing its work until the pandemic has ended.

Project Inform is honored to be a beneficiary of the 2008 Academy Awards® Night Gala on Sunday, February 24, 2008 at Fort Mason in San Francisco.

As a beneficiary of this spectacular event, Project Inform needs your help to ensure the success of the Gala:

Become an underwriter! Gala tickets are $250 each and underwriting opportunities start at $300. Please be sure to reference Project Inform when making your purchase either online or through the mail.

Take a chance (or two)!

• Win a 2008 Mercedes-Benz C300 Sport Sedan! Raffle tickets are $50 each, and only 3,000 tickets will be sold!
• Exclusive travel packages, jewelry and more! General raffle tickets are $10 each or 3 chances for $25.

Volunteer! Project Inform needs to fill 35 volunteer shifts in preparation for the Gala and on the Gala night itself.

Please join us—this event is a lot of fun! For more information on how to help, please contact or call 415-558-8669 x227. For more information on the Academy Awards® Night Gala, please visit www.academyoffriends.org.

Stay Informed: HIV Treatment Guidelines Updated

By Paul Dalton
Published in the Bay Area Reporter, December 6, 2007

On the eve of World AIDS Day 2007, the U.S. Department of Health and Human Services updated its “Guidelines for the Use of Antiretrovirals in HIV-1 Infected Adults and Adolescents.” While not the dramatic change some had anticipated, the revision reflects important shifts in advice about when and how to treat HIV/AIDS. The “Guidelines” now recommend earlier treatment for many HIV-positive people.

The Guidelines are developed by a panel of physicians, researchers and community members who review and interpret the currently available science to develop treatment recommendations. This guidance is provided to assist physicians and people living with HIV/AIDS in making informed treatment decisions based on the best available evidence. I am a current member of the panel.

Recommendations about when to start HIV treatment were revised in a subtle, but important, way. Previously, treatment was only to be considered when a person’s CD4 count was between 200 and 350. Treatment is now recommended for everyone with CD4 counts below 350, all pregnant women, people co-infected with hepatitis B that requires treatment, and anyone with HIV-associated kidney disease or a history of AIDS-defining illness.

Some expected a recommendation for even earlier treatment, as there is a growing sense among experts that earlier treatment may be warranted, particularly at or below CD4 counts of 500. This position has been supported by the availability of more convenient and better tolerated medications, as well as growing evidence that untreated HIV causes significant damage, even at higher CD4 counts.

Scientific proof of the value of starting treatment at CD4 counts above 350 is currently inadequate to make for a strong recommendation. That doesn’t mean that HIV-positive people should not begin treatment above 350, but that the evidence is not sufficiently clear to make a strong recommendation. Of course, it is impossible to know whether and how to start HIV treatment without knowing one’s HIV status. Data suggest that fully 25 percent of Americans who are HIV-positive do not know it. Today, 39 percent of people diagnosed with AIDS only learned of their HIV status within the previous year. These troubling figures point to the need for all sexually active people to take an HIV test at least once each year.

The evolution of HIV treatment recommendations has not been completely linear—with the ‘hit hard, hit early’ strategy of the late 90s giving way to a series of more conservative approaches as the limitations of available medications became apparent. Expert thought once again tends to favor earlier treatment. Those of us who lived through the early HAART era might greet this idea with a healthy dose of skepticism. Make no mistake, however. This is not 1996. Many people with HIV can now realistically think of living normal life spans if they use available HIV medications.

With this welcomed idea comes the need to increase our focus on diseases of aging, like heart disease, diabetes and cognitive decline. While it has long been suspected that HIV drugs might contribute to these conditions, recent studies have illuminated the role that HIV itself likely plays in them, as well. As a person with AIDS, I share in the concern about the toxicity of HIV drugs—I have literally felt it. Although harder to feel, the virus is at least as toxic as the drugs, and likely more so.

The decision about when to begin treatment involves many factors and needs to be based primarily on the welfare of the individual with HIV. Evidence suggests that HIV-positive people on antiretroviral treatment, particularly just after becoming infected, are less likely to transmit HIV to others. The revised Guidelines tread gingerly on this subject, but do address it. They suggest that people in mixed-status relationships (where one person is positive and the other negative) or engaging in risky behaviors might consider treatment as a way of reducing their chances of transmitting HIV.

Guidelines were also changed for ‘Treatment Experienced’ people. Drug resistance testing is now recommended for everyone entering care for the first time and information on two new lab tests (tropism and HLA testing) is included. The panel is working diligently on each section of the Guidelines to ensure they reflect the most current thinking and research, and more changes are on the way.

Although these changes do not represent a wholesale reworking of the way HIV and AIDS are treated, a shift is indeed underway. The demands of lifelong drug treatment and concerns about toxicity and drug resistance have led many to delay starting treatment as long as they thought safely possible. However, a tried and true maxim in medicine is that the earlier you treat, the better the outcome.

As the U.S. Centers for Disease Control prepare to significantly increase the estimated number of new HIV infections occurring each year, the importance of treatment becomes even more profound. Starting treatment earlier in HIV infection, coupled with better options for those already in treatment, provide both the opportunity to improve quality of life for all HIV-positive people and strengthen our HIV prevention efforts.

For more information about the Guidelines, or for comprehensive information about HIV treatment, visit www.projectinform.org or call 800-822-7422.

Seven Ways to Support Project Inform’s Mission

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 at Under One Roof — 549 Castro Street, San Francisco, CA. A portion of the proceeds reach 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 reach Project Inform.

If your company has a matching gift program, be sure to send us the paperwork necessary to double your donation.

Consider leaving a portion of your estate to Project Inform. Contact Brenda Laribee at 415.558.8669 x211 for more information.

Evening of Hope

In late October, over 225 longtime supporters and new friends gathered at the Fort Mason Officer’s Club in San Francisco to honor three unique forces in the fight against the HIV/AIDS epidemic and raised close to $145,000 to support Project Inform’s mission.

HIV Leadership Award winners Phill Wilson and Michelle Roland

Project Inform board member Michael Montgomery presented Dr. Michelle Roland, Chief of the California Department of Public Health’s Office of AIDS, with an HIV Leadership Award. Dr. Roland has been involved in the epidemic since its earliest days and continues to make a tremendous impact on its future as she contributes to decisions at the State level that will shape policy and practice in California and nationwide.

Phill Wilson, Founder and Executive Director of the Black AIDS Institute, received an HIV Leadership Award for helping to mobilize the Black community to fight the epidemic, presented by Project Inform Founding Director Martin Delaney. A long-term survivor of HIV himself, Wilson said, “I’m convinced that one of the reasons I am alive today is because there are people like Martin and organizations like Project Inform there to help.”

Project Inform’s Philanthropic Leadership Award went to Academy of Friends, an organization that has distributed more than $6.5 million to more than 60 AIDS organizations in the San Francisco Bay Area region since its founding in 1980. Project Inform is a beneficiary of Academy of Friends’ 2008 Gala on Sunday, February 24.

The family of Ron Wilmot, founder of the Ron Wilmot Bike Ride, was on hand to receive commemorative Wilmot Ride booklets thanking them for their dedication to Project Inform’s effort to end the epidemic. The Bike Ride concluded this year after thirteen extraordinary and inspirational years of awareness-building and fundraising.

Martin Delaney and Christine Pelosi

The view of San Francisco Bay provided a stunning backdrop to a festive evening of conversation, appreciation and great food from Out of Thyme Catering. The Exeter String Quartet welcomed guests early into the Officer’s Club, while The Ladies of Passion entertained shortly afterwards. The evening’s awards program culminated with a performance by recording artist Spencer Day.

The awards ceremony and gala capped off Project Inform’s 2007 Evening of Hope event season which began on August 20 with a kickoff event hosted by Elevation Salon + Café in downtown San Francisco.

Project Inform Moves into More
Cost-Effective Office Space

On December 15, Project Inform moved into pleasant new office space in San Francisco’s South of Market neighborhood.

After ten years at the corner of 13th and Mission Streets, the time had arrived for less costly, but more comfortable, office space to better support Project Inform’s mission to provide information, advocacy and hope for people living with HIV/AIDS.

The new office space, located at 1375 Mission Street between 9th and 10th Streets, is smaller by approximately 2,000 square feet and provides space for the Project Inform HIV/AIDS Treatment Information Hotline, advocacy and administrative activities.

Our new address is:
     Project Inform
     1375 Mission Street
     San Francisco, CA 94103

Our main phone and fax numbers remain the same:
Phone: (415) 558-8669 Fax: (415) 558-0684
Hotline: 1-800-822-7422 (415-558-9051 local)

And as always, you can find the latest HIV/AIDS treatment and advocacy news at www.projectinform.org.