In Focus #20: March 2006
"Thank you for your wonderful work.
I have a son who I was caregiver for during the 7.5 years
when he had full blown AIDS and a t-cell count under 50. He took
72 pills a day and I gave him an IV daily for a number of years.
He also developed brain cancer. He is alive today with a t-cell
count over 600 and no detectable viral load. Your news-letter (PI
Perspective) kept me hopeful during those very difficult times.
It continues to give me hope. I am deeply grateful to you."
Mrs. A., California
The Future of Project Inform
Martin Delaney, Founding Director
The year 2005 both commemorated Project Inform’s first twenty
years of work and established a time of thoughtful reflection and
change. We compiled the landmarks of Project Inform and the epidemic
since 1985, which was published as Project Inform at 20. We paused
long enough to appreciate the tens of thousands of individuals—donors,
volunteers and colleagues—who collectively championed our
programs. And we capped off this milestone with an enthusiastically
received and attended Evening of Hope.
But it’s no secret that AIDS organizations have faced difficult
times in recent years. Reduced government funding, greater competition
for foundation support, and devastating natural disasters have all
resulted in a decline in funding. Project Inform has not escaped
this reality.
Throughout 2005, we engaged in a challenging process of evaluating
our services to adapt to this new environment. The result is a new,
leaner and more tightly focused Project Inform that exploits our
strengths while reducing overhead. Today’s Project Inform
is committed to an exceptional level of efficiency and clarity of
mission.
As 2006 progresses, our health care and treatment information services
will be increasingly managed through a revitalized website, while
we gradually reduce the printed materials we send by mail. We know
that not everyone can be reached in this fashion, but our widened
use of the web promises to provide vital information to our constituents
far more quickly, both within the U.S. and around the world.
Project Inform will continue its pioneering work in the advocacy
arenas of treatment research and health care access. Though many
groups collaborate in this work, Project Inform continues to cultivate
a uniquely influential position with government, academia and pharmaceutical
industry.
As Project Inform continues to be a leading voice in treatment
information and advocacy, we do so with a more agile staff—with
each managing their own portfolio of work. Project Inform will now
be managed by a unique three-person management team: a strong development
staff led by our Development Director; fiscally responsible operations
led by our Director of Administration; and programs and services
led by me as the Founding Director.
Overseeing the newly structured organization will be a new and
strategically designed Board of Directors. This includes board members
from anywhere in the country who have the necessary skill sets and
who reflect the makeup of today’s epidemic.
In this coming year, we are committed to making the new Project
Inform as vital and efficient as possible and to make the best possible
use of the accumulated experience, skills and influence of our staff
and volunteers. We look forward to your continued support and input.
NOTE: To receive fast-breaking information as it’s posted
to our website, simply email us your preferred email address at
support@projectinform.org. Please type WEB UPDATES in the subject
line.
Project Inform’s National HIV/AIDS
Treatment Infoline Helps Save Lives
Project Inform’s National HIV/AIDS Treatment Infoline answers
1,000 calls each month from people from around the country, and
sometimes from around the world. The Infoline team of experienced
volunteers recently fielded a call from a man in a life-or-death
situation. “Roger” had just moved to South America from
the U.S. and found out that he was HIV-positive, with a viral load
that warranted immediate treatment. An Infoline volunteer discussed
treatment options and helped calm Roger’s fears.
A few days later, Roger called again because he had developed a
severe rash. His doctor had told him the rash was nothing of concern,
but the Infoline volunteer recognized it as a possible reaction
to nevirapine (Viramune), and implored Roger to go to the emergency
room. Once there, the ER physician told Roger that the rash was
indeed a drug reaction, and that it was life-threatening.
Back home after a few days in the hospital, Roger called the Infoline
once more, expressing his gratitude. He said the incident would
make him more proactive with his (new) doctor, and that his interaction
with the Infoline volunteers had inspired him to learn more about
HIV. We were pleased but not surprised: this is how Project Inform’s
Infoline volunteers have helped people with HIV for nearly 20 years.
Project Inform’s Infoline volunteers are ready to answer
your calls Monday–Friday, 10am–4pm PST. Call 1-800-822-7422
(toll-free in the U.S.) or 1-415-558-9051 (San Francisco Bay Area
or internationally).
Health Care Advocacy Producing Solutions
Project Inform’s health care advocacy priorities for this
year include two key issues: reauthorization of the Ryan White CARE
Act including the AIDS Drug Assistance Program (ADAP), and the impact
of the new Medicare prescription drug benefit on the sickest and
poorest people with HIV/AIDS.
The CARE Act was due to be reauthorized in September 2005, but
Congress let the deadline pass. While funding for the Act (including
ADAP) has been extended, reauthorization legislation will eventually
be introduced sometime this year, and it may have a major impact
on which services are prioritized and how funds get distributed.
Project Inform is working with partner agencies at the national
level to ensure that the reauthorized Act continues to provide care
and treatment for people with HIV/AIDS, as well as vital support
services such as food programs and transportation assistance. We’re
also working on proposals that will funnel more money to states
with emerging needs, without harming people with HIV/AIDS in other
states.
Meanwhile, the Medicare prescription drug benefit debacle is unfolding
at an alarming pace. Medicare Part D took effect January 1, 2006,
and for very low-income people with HIV who formerly accessed HIV
treatment under Medicaid, the forced switch to Medicare Part D has,
in many cases, meant a complete loss of access to their medicines.
Thirty to 35 states have had to step in with emergency coverage,
including California. Project Inform is actively working on solutions
in California, monitoring other state-level solutions across the
country, and working with other advocates to develop longer-term
federal proposals to address this dire situation.
Project Inform will update its website with new developments and
action alerts on both of these topics. Visit www.projectinform.org
to learn how you can participate in this important work.
12th Annual Ron Wilmot
Bike Ride Set for Saturday, May 13th
Join us May 13th for the 12th Annual Ron Wilmot Bike Ride and help
raise vital funding to support the fight against AIDS! This fun
and energizing 7-mile ride will kick-off at 10am (registration at
9am) from Peacock Meadow in the eastern end of Golden Gate Park
on JFK Drive, between McLaren Lodge and the Conservatory of Flowers.
Registration is only $50 ($75 for families who register together)
and is credited directly to your overall fundraising total. We suggest
each participant raise at least $500.
We give you all the information you need to help get started on
your fundraising! All riders receive a special Wilmot Ride T-shirt,
delicious food at the event, and the satisfaction of making an impact
in the fight against HIV/AIDS. At least 95 cents of every dollar
raised from this event goes directly to support Project Inform’s
health care and treatment advocacy services. There will also be
exciting prizes for the riders who raise the most money.
This beloved annual fundraising event was founded in 1995 by Ron
Wilmot, an avid cyclist who personally relied on Project Inform’s
HIV treatment information to better manage his health. Ron founded
this bike ride as a way of supporting Project Inform’s local
and national work. His courage and fortitude were legendary in the
AIDS community, single-handedly raising more than $100,000 in the
first two years of the Ride. Although Ron died of AIDS in 1997,
the fundraising event he pioneered carries on.
For more information, you may contact Mark Owens at 415-558-8669
x218 or by email at mowens@projectinform.org. You may also visit
www.projectinform.org for more information, to register, or to sponsor
someone who is already registered to ride.
2005 Evening of Hope
Commemorates 20th Anniversary
A festive group of 300 supporters and friends of Project Inform
gathered at the City Club in San Francisco on October 25, 2005 for
the 2005 Evening of Hope Gala. More than $280,000 was raised to
support the work of Project Inform. The program focused on honorees
whose impulse to educate, agitate and communicate during the darkest
hours of the HIV/AIDS crisis led to the founding of Project Inform,
and who have continued to sustain our vital work through the years.
The awardees included: Senator Barbara Boxer (HIV Policy Leadership
Award); Timothy C. Wu (Activism Award); Kaiser Permanente (Healthcare
Inspiration Award); and Martin Delaney (Visionary Founder Award).
Veronica Klaus and the Tammy Hall Trio entertained the crowd with
their beautiful music. Thank you to everyone who helped make the
event a great success. Watch your mailboxes for more information
about the 2006 Evening of Hope!
Cyclists in New England RideFAR
and Support Project Inform
In September 2005, 33 riders and crew participated in RideFAR,
a 5-day, 500-mile fundraising bike ride from Provincetown to Stowe,
MA. More than $150,000 was raised for children and adults living
with HIV—the highest amount ever for this event!
Every other year since 1989, dozens of ambitious fundraising cyclists
rally their friends, family and co-workers to support them as they
cycle through the New England back roads. This year’s beneficiaries
included the Call to Action Project of the Elizabeth Glaser Pediatric
AIDS Foundation, Project Inform and local AIDS service organizations
selected by the riders.
Thousands of individuals, businesses and communities have helped
raise nearly $800,000 since the ride’s inception, and continue
to increase AIDS awareness in the towns along the ride’s route.
Project Inform is deeply grateful to RideFAR’s founding cyclist,
Suzy Becker, and to all the cyclists and supporters who make this
event so successful.
Academy of Friends Gala Benefits Project Inform
On March 5, Project Inform joined 12 other Bay Area AIDS organizations
as a beneficiary of the 26th annual Academy
of Friends (AOF) Gala. The Gala raises more than $500,000 each
year while throwing the largest Academy Awards® party outside
of Los Angeles. More than 3,000 attendees were wined and dined by
premier Bay Area restaurants and vintners while watching the awards.
The event also included a world-class silent auction and live entertainment.
We truly appreciate everyone at AOF and the generosity of their
donors and volunteers for their ongoing support of Project Inform
and the local HIV community. The funding will enable Project Inform
to continue its vital work, providing critical and life-saving HIV/AIDS
treatment information to those living with the disease.
Help is on the Way for the
Holidays VI Benefits Project Inform
On Sunday, December 4, 2005 the Richmond/Ermet AIDS Foundation
(REAF) held its annual event, Help is on the Way for the Holidays
VI. This benefit concert and holiday tradition featured stars from
Broadway, film, television and recording industry as well as leading
talent from the San Francisco Bay Area. Project Inform is grateful
to have been chosen as one of the beneficiaries of this festive
event.
Many thanks to everyone who made this year’s event a great
success, including Joe Seiler and Ken Henderson and all of REAF’s
volunteers and donors who helped raise more than $60,000 which was
distributed to three beneficiaries.
Project Inform will also benefit from this summer’s Help
is on the Way XII to be held on Sunday, July 30, at the Masonic
Auditorium on San Francisco’s Nob Hill. For more information,
visit www.richmondermet.org
or call 415-546-REAF.
Robert James Frascino AIDS Foundation
Partners Again with Project Inform
Since 2002, the Robert James Frascino AIDS Foundation has supported
Project Inform through its annual event, A Concerted Effort. In
December 2005, Project Inform was awarded $7,500 from the Foundation’s
highly successful raffle. Project Inform thanks the Frascino AIDS
Foundation for its continued support of our Integrated Treatment
Education Program, which includes publications, website, Infoline,
and health care and research advocacy.
