Faith Leaders Skill Building Institute Tool Box (Final)
Postive News 1st Ed - 2007
1. We have just launched a new Web site for patients newly
diagnosed with HIV, those currently receiving treatment, and
caregivers. APositiveLife.com is an interactive, informative
resource that cuts through the science to make HIV understandable
to a wide audience. “We wanted to create a site that’s not just
facts, but an interesting, positive experience for people seeking
information and support,” explains Kate DeBruin, manager of
GSK’s HIV Scientific Communications.
The site offers fascinating video testimonials from real patients
and caregivers who tell their stories with a positive perspective.
Among those you’ll meet are:
Helen, a patient who was diagnosed in 1987.
“When I was first diagnosed, I wanted to run, I
wanted to dig a hole and pull the dirt in over
me. But immediately I knew I want to live…I
chose learning all that I could about this dis-
ease so that I can be proactive in
conjunction with managing my health.”
Rodney, a patient diagnosed in 1991.
“The worst punishment to a man here on
earth is to live without hope. I’m here to
offer you that hope. You can live a full,
happy life.”
David, a caregiver whose
brother died from an AIDS-related
illness and whose wife is HIV+.
“I have a personal connection with the virus…
At the time I met my wife we didn’t know she
was HIV-positive. When I look at my wife, I see
the woman that I love, I don’t see HIV.”
GSK
National
ASO
Day, March
20
APositiveLife.com includes:
• how HIV works
• where to get help
• financial programs available for patients
• managing side effects
• co-morbidities
• questions to ask one’s doctor
Introducing APositiveLife.com
We hope this site will provide you another
useful source of information and support for
you and your clients.
Issue
1::Spring
2007
.. .
2. Welcome to the first issue
of Positive News, a quarterly
newsletter for the staff of
AIDS service organizations. In this and every issue we will
highlight an organization’s project or program we consider
a “best practice” in the hope that spreading good news
about what’s working in one community will trigger ideas
you can use in your own. We will also share helpful
resources and relevant events.
Positive News is one of the educational resources we
have created as part of our new program, A Positive Life.
Others include patient education programs; ASO staff
education materials and tools; and the Web site,
APositiveLife.com.
The GSK HIV Clinical Specialists who visit you are interested
in finding ways to continue providing educational
resources and tools for patients and caregivers – and
that is my goal, as well.
As I work with ASOs across the country,
I’m motivated by your passion and creativity.
I especially enjoy learning about the
educational programs and services you
provide. It’s evident that you’re making a difference in
your community through your support of those affected
or infected by HIV.
We hope you will find Positive News a useful source of
new ideas and inspiration. If you have any suggestions
for topics you would like us to cover, or want to offer
feedback on what you’ve read, please send me an email
at PositiveNews@gsk.com.
GSK Celebrates ASOs
Why are we focusing our attention on ASOs? Working with ASOs
brings us closer to the patients. Dedicating time to work with and
understand the needs of the compassionate people who work in
ASOs helps remind us we still have important work to do.
We chose March 20th to honor GSK’s longstanding commitment
to the HIV community. Twenty years ago on this day the FDA
approved the first drug we developed as a treatment for HIV.
“Back then, nobody thought it could be done – but we knew we
had to try,” recalls Marty St. Clair, one of the scientists who
volunteered for the drug-discovery team that was racing against
a frightening, little-understood disease. “If we hadn’t taken that
first step, we wouldn’t be where we are today.”
Although HIV treatment has come a long way since, we believe it’s important that we periodically reflect on what it
was like at the beginning of the epidemic in the US, when our company offered the first ray of hope to those who
had been diagnosed with a disease they considered a death sentence. Since then, GSK has developed more medicines
to treat HIV than any other company. And Marty is still in the lab, working with the next generation of scientists who
are dedicating their careers to improving the lives of HIV patients.
GSK’s national ASO Day is an exclamation of our commitment to the community you serve. We hope our annual
celebration will encourage you to take time to reflect on the remarkable journey that has shifted the focus of HIV
treatment and education from saving lives to helping patients manage a chronic disease.
OUR MISSION
Establish effective partnerships with AIDS Service
Organizations to educate, empower, and inspire
HIV community members. Provide relevant tools
and opportunities that encourage community
members to actively participate in and take
responsibility for their health.
GSK scientist Marty St. Clair – who raises and
shows llamas when she’s not in the lab – livens
up the AIDS Walk in Raleigh, NC, every year
with “Team Llama.”
Maja Hall
ASO Market Development Manager
GlaxoSmithKline
One on OneONE ON ONE
3. sitive Resourcessitive Resourcessitive Resourcessitive Resourcessitive Resources
Positive ResourcesPositive ResourcesPositive ResourcesPositive ResourcesPositive Resources
Those who don’t understand the HIV
epidemic, and who is most at risk,
are sometimes surprised that GSK
employees call on healthcare
providers in prisons. I manage four
Correctional Account Managers
who work with prisons and AIDS
service organizations to help
ensure continuity of care for
HIV patients. Some of you
are already familiar with us;
if you aren’t, I hope you will
consider us a resource if you
need guidance in working with
correctional facilities and/or
ex-offenders.
Our collaboration with ASOs is
a natural extension of our work
in prisons. Early on we recognized
there was a giant disconnect
between the healthcare patients
receive in correctional facilities and
what happens when they return to
the community. Many receive the best
healthcare of their lives while they are
incarcerated. Upon release their therapy
can become interrupted when they’re
focused on finding housing, food,
and employment. ASOs play an
important role in reaching out to
inmates who are going to be released
into the community to ensure they
continue treatment.
One program we have developed in
collaboration with ASOs is Reach
One, Teach One, which allows HIV+
peer educators to teach other
inmates the importance of taking
responsibility for managing
their disease. Local
ASOs train the peer
educators and we
help with speakers
and other resources.
In New York City we
coordinated with the
NYDOC, the NYDOH, and
The Bridge Project to
develop a visitor’s guide
of available services for
prisoners at the city’s
largest jail facility, Rikers Island. We
worked with the jail and the Depart-
ment of Health to steer HIV+ prisoners
to appropriate post-release assistance.
How can we help you? If your ASO
is trying to create programs to reach
out to inmates or newly released
ex-offenders, we can offer guidance
in planning and, in many cases, with
contacts at prisons. We have clinical
educators who can speak to these
groups. And we have a desire to
ensure that these patients and their
families receive the treatment and
education they deserve. To learn more,
please contact us through the Clinical
Specialist who calls on your ASO.
Positive News GSK National ASO Day, March 20 Spring 2007
Providing Services to Prisoners
1
Doug Wood
Director,
Correctional HIV Sales
GlaxoSmithKline
Nearly 80% of all HIV patients
have medical coverage for HIV
drug resistance testing.
Genotype and phenotype test-
ing is covered by Medicare,
Medicaid, and the top 50 private
plans. (Medicaid coverage of
resistance testing is not, however,
available in Mississippi). ADAP
coverage of resistance testing is
available, but varies by state. To
learn more, call the PhenoAID
Hotline: 877.436.6243 or go to
www.MonogramHIV.com.
Grants.gov allows organizations
to electronically find and apply
for more than $400 billion in
federal grants. According to
their Web site: “There are over
1,000 grant programs offered
by all federal grant making
agencies. The US Department
of Health and Human Services
is proud to be the managing
partner for Grants.gov, an
initiative that is having an
unparalleled impact on the
grant community.” To learn
more, go to www.grants.gov.
Positive
TIPSTIPS
2
4. Worth Sharing
Worth Sharing will be a regular feature of Positive News. In each issue we
will highlight a notable ASO program or service we believe is worth sharing
with you. We hope you’ll find these articles interesting and inspiring.
Some people go through a long period
of denial and grief after learning they are
HIV+. “Many aren’t emotionally ready to
take those next steps, but it’s important to
get them into treatment to minimize the
challenges that result from delayed care
and lack of social support,” says Neena
Smith-Bankhead, AID Atlanta’s director
of Education and Volunteer Services.
Determined to find a way to bridge the
gap between diagnosis and acceptance,
AID Atlanta researched the information
and support needs of newly diagnosed
individuals. They conducted focus groups with people who had lived
with HIV for over two years, and with the newly diagnosed; and
they surveyed key contacts in healthcare, mental health, and social
service organizations.
Discovery, the program that resulted from their research, creates an
environment that encourages and fosters active involvement of
group participants through role plays, group discussions, panel
presentations, and skills development. “The goal is to have people
learn how to access resources and connect with people who are
going through a similar situation,” Neena explains. “It’s an educational
group, but it’s also a support session.” To ensure effective interaction,
group size is limited to 12 participants.
Michael Seabolt, AID Atlanta’s manager of Information Services, leads
the Discovery groups. He believes HIV+ volunteers who co-facilitate
Discovery sessions are critical to the success of the program.
“Sometimes it’s so overwhelming, people can’t imagine how they’re
going to live a normal life with this disease,” he comments. “These
volunteers, who have been through all of that and are living happily
and successfully, are great role models. The participants can see
evidence that there is life after HIV – and quality life.”
Discovery is not a support group in the traditional sense. It’s an
educational group that meets in a supportive environment. But
bonds definitely develop over the six weeks – which led to the
creation of an alumni group that meets once a quarter. Michael
recruits his co-facilitators from the dedicated Discovery alumni.
“The feedback I’ve received from this program has been very positive,”
says Michael. “People say it’s a rewarding experience for them.
The real value is that it jump-starts the process of integrating
HIV into their lives in a healthy, functional way.”
How Discovery
Evolves
Discovery consists of six program
modules. Here is a summary of
each session:
1. Orientation Introduction to
group process, overview of
program objectives and meeting
schedule, challenges faced by
people living with HIV, strategies
to cope with the discovery crisis.
2. HIV/AIDS Basics Overview of
immune system, disease progression,
opportunistic infections, and
lab tests; introduction to
treatment basics.
3. Mental Health and Stress
Management Presentation of
mental health maintenance
strategies, the four stress
management competencies,
support resources for mental
health services, demonstration
of relaxation techniques.
4. Relationships and Sexual Health
Identifying and categorizing
relationships, responsible sex
practices, sexual compulsivity and
managing triggers, condoms or
abstinence, reinfection/
superinfection.
5. Disclosure The decision to tell,
reasons to keep silent, legal issues
related to disclosure, communication
strategies for the disclosure process.
6. Living Well Understanding
nutrition, alternative/complementary
therapies, general health
considerations.
AID Atlanta
Founded in 1982, AID Atlanta is the Southeast’s
largest AIDS service organization. There are approximately 27,000
people who are living with HIV/AIDS in Georgia; current CDC statistics
rank the state as fifth in the nation in the number of reported AIDS
cases. The clinic at AID Atlanta tests approximately 400 people a
month; 3-5% test positive for HIV. AID Atlanta offers a broad spectrum
of education, prevention, and support programs, including the
Georgia AIDS & STD Infoline. To learn more, go to AIDAtlanta.org.
Does your ASO have a program
you’d like to tell others about?
If so, please send us an email at
PositiveNews@gsk.com, and put
“worth sharing” in the subject line.
Positive News GSK National ASO Day, March 20 Spring 2007
Guiding Newly
Diagnosed Patients
Through Discovery
5. We have just launched a new Web site for patients newly
diagnosed with HIV, those currently receiving treatment, and
caregivers. APositiveLife.com is an interactive, informative
resource that cuts through the science to make HIV understandable
to a wide audience. “We wanted to create a site that’s not just
facts, but an interesting, positive experience for people seeking
information and support,” explains Kate DeBruin, manager of
GSK’s HIV Scientific Communications.
The site offers fascinating video testimonials from real patients
and caregivers who tell their stories with a positive perspective.
Among those you’ll meet are:
Helen, a patient who was diagnosed in 1987.
“When I was first diagnosed, I wanted to run, I
wanted to dig a hole and pull the dirt in over
me. But immediately I knew I want to live…I
chose learning all that I could about this dis-
ease so that I can be proactive in
conjunction with managing my health.”
Rodney, a patient diagnosed in 1991.
“The worst punishment to a man here on
earth is to live without hope. I’m here to
offer you that hope. You can live a full,
happy life.”
David, a caregiver whose
brother died from an AIDS-related
illness and whose wife is HIV+.
“I have a personal connection with the virus…
At the time I met my wife we didn’t know she
was HIV-positive. When I look at my wife, I see
the woman that I love, I don’t see HIV.”
GSK
National
ASO
Day, March
20
APositiveLife.com includes:
• how HIV works
• where to get help
• financial programs available for patients
• managing side effects
• co-morbidities
• questions to ask one’s doctor
Introducing APositiveLife.com
We hope this site will provide you another
useful source of information and support for
you and your clients.
Issue
1::Spring
2007
.. .