Postive News 1st Ed - 2007

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 .. .

Transcript of Postive News 1st Ed - 2007

Page 1: Postive News 1st Ed - 2007

We have just launched a new Web site for patients newly diagnosed with HIV, those currently receiving treatment, andcaregivers. APositiveLife.com is an interactive, informativeresource that cuts through the science to make HIV understandableto a wide audience. “We wanted to create a site that’s not justfacts, but an interesting, positive experience for people seekinginformation and support,” explains Kate DeBruin, manager ofGSK’s HIV Scientific Communications.

The site offers fascinating video testimonials from real patientsand 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, Iwanted to dig a hole and pull the dirt in overme. But immediately I knew I want to live…Ichose 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 onearth is to live without hope. I’m here tooffer 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.”

GSKNational

ASODay,

March20

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 foryou and your clients.

Issue1::Spring2007

.. .

Page 2: Postive News 1st Ed - 2007

Welcome to the first issue of Positive News, a quarterlynewsletter for the staff of

AIDS service organizations. In this and every issue we willhighlight an organization’s project or program we considera “best practice” in the hope that spreading good newsabout what’s working in one community will trigger ideasyou can use in your own. We will also share helpfulresources 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 interestedin finding ways to continue providing educationalresources 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 inyour community through your support of those affected or infected by HIV.

We hope you will find Positive News a useful source ofnew ideas and inspiration. If you have any suggestions for topics you would like us to cover, or want to offerfeedback on what you’ve read, please send me an email at [email protected].

GSK Celebrates ASOsWhy are we focusing our attention on ASOs? Working with ASOsbrings us closer to the patients. Dedicating time to work with andunderstand the needs of the compassionate people who work inASOs 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 FDAapproved the first drug we developed as a treatment for HIV.“Back then, nobody thought it could be done – but we knew wehad 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 thatfirst 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 itwas like at the beginning of the epidemic in the US, when our company offered the first ray of hope to those whohad been diagnosed with a disease they considered a death sentence. Since then, GSK has developed more medicinesto treat HIV than any other company. And Marty is still in the lab, working with the next generation of scientists whoare 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 HIVtreatment and education from saving lives to helping patients manage a chronic disease.

OUR MISSIONEstablish 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 HallASO Market Development ManagerGlaxoSmithKline

One on OneONE ON ONE

Page 3: Postive News 1st Ed - 2007

sitive ResourcesPositive Resourcessitive ResourcesPositive Resourcessitive Resources

Positive ResourcesPositive ResourcesPositive ResourcesPositive ResourcesPositive Resources

Those who don’t understand the HIVepidemic, and who is most at risk,are sometimes surprised that GSKemployees call on healthcareproviders in prisons. I manage fourCorrectional Account Managerswho work with prisons and AIDSservice organizations to helpensure continuity of care forHIV patients. Some of youare already familiar with us; if you aren’t, I hope you willconsider us a resource if youneed guidance in working withcorrectional facilities and/or ex-offenders.

Our collaboration with ASOs isa natural extension of our work in prisons. Early on we recognizedthere was a giant disconnectbetween the healthcare patientsreceive in correctional facilities andwhat happens when they return to the community. Many receive the besthealthcare of their lives while they areincarcerated. Upon release their therapycan become interrupted when they’refocused on finding housing, food,and employment. ASOs play animportant role in reaching out toinmates who are going to be releasedinto the community to ensure theycontinue treatment.

One program we have developed incollaboration with ASOs is ReachOne, Teach One, which allows HIV+peer educators to teach otherinmates the importance of taking

responsibility for managingtheir disease. LocalASOs train the peereducators and wehelp with speakers

and other resources.

In New York City wecoordinated with theNYDOC, the NYDOH, and

The Bridge Project todevelop a visitor’s guide

of available services forprisoners at the city’s

largest jail facility, Rikers Island. Weworked with the jail and the Depart-ment of Health to steer HIV+ prisonersto appropriate post-release assistance.

How can we help you? If your ASO is trying to create programs to reachout to inmates or newly released ex-offenders, we can offer guidancein planning and, in many cases, withcontacts at prisons. We have clinicaleducators who can speak to thesegroups. And we have a desire toensure that these patients and theirfamilies receive the treatment andeducation they deserve. To learn more,please contact us through the ClinicalSpecialist who calls on your ASO.

Positive News GSK National ASO Day, March 20 Spring 2007

Providing Services to Prisoners

1

Doug WoodDirector,

Correctional HIV SalesGlaxoSmithKline

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

Page 4: Postive News 1st Ed - 2007

Worth SharingWorth Sharing will be a regular feature of Positive News. In each issue wewill highlight a notable ASO program or service we believe is worth sharingwith 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 areHIV+. “Many aren’t emotionally ready totake those next steps, but it’s important toget them into treatment to minimize thechallenges that result from delayed careand lack of social support,” says NeenaSmith-Bankhead, AID Atlanta’s director of Education and Volunteer Services.

Determined to find a way to bridge thegap between diagnosis and acceptance,AID Atlanta researched the informationand support needs of newly diagnosed

individuals. They conducted focus groups with people who had livedwith HIV for over two years, and with the newly diagnosed; and they surveyed key contacts in healthcare, mental health, and socialservice organizations.

Discovery, the program that resulted from their research, creates anenvironment that encourages and fosters active involvement ofgroup participants through role plays, group discussions, panel presentations, and skills development. “The goal is to have peoplelearn how to access resources and connect with people who aregoing through a similar situation,” Neena explains. “It’s an educationalgroup, 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, leadsthe Discovery groups. He believes HIV+ volunteers who co-facilitateDiscovery sessions are critical to the success of the program.“Sometimes it’s so overwhelming, people can’t imagine how they’regoing to live a normal life with this disease,” he comments. “Thesevolunteers, who have been through all of that and are living happilyand 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. Butbonds definitely develop over the six weeks – which led to the

creation of an alumni group that meets once a quarter. Michaelrecruits 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 integratingHIV into their lives in a healthy, functional way.”

How DiscoveryEvolvesDiscovery consists of six programmodules. Here is a summary ofeach session:

1. Orientation Introduction togroup process, overview of program objectives and meetingschedule, challenges faced by people living with HIV, strategiesto cope with the discovery crisis.

2. HIV/AIDS Basics Overview ofimmune system, disease progression,opportunistic infections, and lab tests; introduction to treatment basics.

3. Mental Health and StressManagement Presentation ofmental health maintenance strategies, the four stress management competencies, support resources for mentalhealth services, demonstration of relaxation techniques.

4. Relationships and Sexual HealthIdentifying and categorizing relationships, responsible sex practices, sexual compulsivity andmanaging triggers, condoms orabstinence, reinfection/superinfection.

5. Disclosure The decision to tell,reasons to keep silent, legal issuesrelated to disclosure, communicationstrategies for the disclosure process.

6. Living Well Understandingnutrition, alternative/complementarytherapies, general health considerations.

AID AtlantaFounded in 1982, AID Atlanta is the Southeast’s

largest AIDS service organization. There are approximately 27,000people who are living with HIV/AIDS in Georgia; current CDC statisticsrank the state as fifth in the nation in the number of reported AIDScases. The clinic at AID Atlanta tests approximately 400 people amonth; 3-5% test positive for HIV. AID Atlanta offers a broad spectrumof education, prevention, and support programs, including theGeorgia 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

[email protected], and put

“worth sharing” in the subject line.

Positive News GSK National ASO Day, March 20 Spring 2007

Guiding NewlyDiagnosed PatientsThrough Discovery

Page 5: Postive News 1st Ed - 2007

We have just launched a new Web site for patients newly diagnosed with HIV, those currently receiving treatment, andcaregivers. APositiveLife.com is an interactive, informativeresource that cuts through the science to make HIV understandableto a wide audience. “We wanted to create a site that’s not justfacts, but an interesting, positive experience for people seekinginformation and support,” explains Kate DeBruin, manager ofGSK’s HIV Scientific Communications.

The site offers fascinating video testimonials from real patientsand 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, Iwanted to dig a hole and pull the dirt in overme. But immediately I knew I want to live…Ichose 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 onearth is to live without hope. I’m here tooffer 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.”

GSKNational

ASODay,

March20

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 foryou and your clients.

Issue1::Spring2007

.. .