Recent accomplishments
Summer 2007 View PDF
Inspiration ...
“I feel like you guys are looking out for me, and I appreciate
your efforts and actions ... thank you for being there in the past
for me. I hope you will be able to continue to be there in the future.”
— Douglass
“Project Inform has helped so many of us no matter where
we are in America and the world. I treasure each and every day of
life.” — Lonny
Health care advocacy
Project Inform’s Health Care Advocacy Program focuses on
advocating for accessible, affordable, quality health care and treatment
for people with HIV. Project Inform is the only national community-based
HIV organization with a program that focuses exclusively on health
care policy and advocacy.
- Project Inform participated in a coalition of national
HIV/AIDS advocacy organizations that secured major improvements
in the final Ryan White Program (formerly the Ryan White CARE
Act) reauthorization bill, including protection of all Title I
cities and hold harmless provisions that keep cities and states
from severe funding losses year to year, and expansion of the
AIDS Drug Assistance Program supplemental fund.
- Project Inform helped lead a national campaign to secure
a $75 million increase in Ryan White Title II base funding.
This funding goes to all states for primary care, treatment and
support services. This substantial increase provided great relief
for many states struggling to meet the needs of their constituents
with HIV/AIDS.
- Project Inform worked in coalition with HIV and hepatitis
C advocates to establish a national grassroots advocacy
network focused on securing increases in funding for viral hepatitis
programs and legislation to mount a comprehensive federal approach
to battling the hepatitis C epidemic.
- Project Inform worked with the HIV Medicaid and Medicare Working
Group to create a national advocacy agenda for both Medicaid
and Medicare, work toward the enactment of that agenda,
and secure a monthly call with the Medical Director for the Centers
for Medicare and Medicaid Services (CMS) aimed at solving systemic
and individual problems in Medicare Part D.
Treatment and research advocacy
Project Inform continued to provide tens of thousands of individuals
with HIV across the country with reliable, well-researched and impartial
HIV treatment information.
- Project Inform worked with the HIV Medicaid and Medicare Working
Group to prepare educational materials for Part D beneficiaries
regarding changes at the beginning of plan year 2007, and presented
Part D workshops in California, Wisconsin and Louisiana.
In addition, Project Inform helped thousands of individuals
throughout the United States solve Part D access issues.
- Project Inform published two issues of its treatment
journal, PI Perspective, with articles that include new
drug approvals, the changing face of the AIDS epidemic and international
conferences.
- Project Inform held 9 Town Meetings in 7 states,
which include Billings, MT; Hilo and Kona, HI; Nashville, TN;
New Orleans, LA; Rochester, NY; Oakland and San Francisco, CA;
and Worcester, MA. These “town hall” meetings provide
in-depth information on topics such as metabolic complications
and overcoming drug resistance for audiences of clients and care
providers.
- Project Inform’s National HIV/AIDS Treatment Information
Hotline recruited and trained five new volunteer operators,
implemented an online call tracking system to capture constituent
statistics and demographics, and improved its capacity to handle
calls from monolingual Spanish constituents.
- Project Inform produced and updated the following treatment
publications in English and Spanish: Blood Work •
Etravirine • HIV and the Mouth •
Human Growth Hormone • IL-2 •
Isentress • Maraviroc • Non-occupational
Post Exposure Prophylaxis • PCP Prevention •
PML • Talking to Your Doctor About nPEP •
Ways to Test for HIV.
Treatment and health care education
Project Inform’s Treatment and Research Advocacy Program
promotes the development and approval of the most promising new
treatments for people with HIV. The program advocates with government
officials to ensure that scarce resources are allocated to the most
promising new research, works with academic scientists to foster
the flow of new ideas from “bench to bedside,” and influences
pharmaceutical companies in the overall drug development process.
- Project Inform’s campaign to refocus the research
and patient communities on seeking a true cure for HIV has begun
to show concrete results. When we began the campaign
in 2005, most research groups and many community groups considered
the goal unrealistic and a diversion of energies. Today, there
are at least five major research programs underway seeking an
outright cure of the disease. Additionally, publicity about these
efforts has now generated a new level of support for finding a
real cure as a goal of AIDS activism.
- Project Inform organized and led teams to work with
Pfizer and Merck on the pricing of their upcoming drugs,
maraviroc and raltegravir, successfully demonstrating that high
prices would cripple government payers (such as ADAP and Medicaid)
and add to the waiting lists for treatment that already exist
in several states.
- In collaboration with a small group of other activists, Project
Inform convinced Serono to change the theme of its upcoming
advertising campaign for human growth hormone (soon to
be approved for treating the HIV drug side effect, lipodystrophy)
to demonstrate a better understanding of the needs of HIV-positive
people who suffer from disfiguring side effects of HIV medications.
- Project Inform began planning “HAART 2.0,”
a promising and exciting think-tank style meeting 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.
