hiv i-base: importance of treatment literacy moscow - feb 2006 treatment literacy and peer support...

HIV i-Base: Importance of treatment literacy Moscow - Feb 2006

Treatment literacy and peer support

Moscow, February 2006

Simon Collins

HIV i-Base, London


Why treatment preparedness

• Introduction

• What is treatment literacy and treatment preparedness

• Role of HIV+ in treatment literacy

• Examples from the UK

• International links

• Cost savings and effectiveness


Why treatment literacy?


In one village, almost 90% of people stopped taking the ARVs within a short period of time. This was because of the way they distributed the drugs without any education. They just passed them out with no information.

Some of the people had side effects and the others watched them and stopped.

There was a lack of understanding and no treatment literacy and rumours came from the village, “the government is trying to poison us." There is a lot of misunderstanding.

Thomas Cai, China


HIV i-Base

• HIV positive led treatment advocacy organisation based in London

• We produce technical information for health care workers and non-technical information for positive people

• Other services: a treatment phoneline, training and workshops, scientific meetings

• We produce copyright-free material that has been translated into 28 languages


Personal history

• Started HIV medication in 1996 with CD4 count = 2 (normal range = 500-1600)

• 10 years as a treatment advocate

• Experience in UK and European HIV-positive NGOs and international networks

• Treatment workshops in UK, Europe, Uganda, South Africa, India, Taiwan


Common experiences

• Shock of diagnosis

• Isolation, prejudice, denial

• Need for information

• How long will I live?

• Can I get treatment?

• Do the drugs work?

• Fear of side effects?


Definitions

Treatment literacy - an HIV-positive person who starts to understand their own health:

• CD4 count - indicates immune system

• viral load - effectiveness of treatment

Treatment preparedness - community responses, peer advocacy, access to information, adherence, resistance, risk reduction, etc

• WHO and TIDES international funding $3m


Role of patients in treatment literacy and peer advocacy

• Experience can be more important than formal medical training - language

• Highly motivated - most affected

• Better health and support

• People directly affected have already stopped working - illness or discrimination - ie Uganda Mbuya clinic - ‘twin’ support - 99.3% adherence

• Cost effective - often volunteers


UK experience

• Little treatment preparedness in 1996 when treatment was first introduced

• But, a network of voluntary and peer support services existed

• Network developed programmes for adherence, resistance, treatment choice

• Patient drive for treatment and information

• Similar models in every country where HIV is a health issue - ie peer support first


Peer support

• Complements and works with medical professionals: committed, motivated, appropriate language, inexpensive

• Different interventions for different groups

• Increased adherence, reduces costs from failing treatment: UK, Uganda, South Africa

• Effective treatment complements prevention and coinfection programmes

• In 2006 <10% IDU in UK are HIV+


Examples

Direct experience of real life:

• Produce basic resources in non-technical language: infection, prevention, treatment, side effects; also HTB

• Workshops, treatment phoneline

• Help relating to discrimination or fear of authority prevents HIV staying underground

• Always more effective than official/govt/professional - language


Phoneline

• 40+ volunteers, 90% HIV-positive

• Free/low cost anonymous, any treatment question, ‘second opinion’

• Personal support & treatment information when caller realises they are talking to HIV+ person, calls 30-40 minutes+

• Training programme provided speakers and patient experts for medical and governmental committees


Best practice in the UK

• Clinic-based support groups

• Patient representation & involvement on policy and guideline committees

• Low cost phoneline or 1-2-1 for confidential support and information

• Low cost written information on each drug and each side effect

• Other support: i.e. why HIV treatment is different: “a little is not a good thing” etc


Why “a little is not a good thing”

• Different to other treatment - against ‘common sense’ - ie for headache, heart disease, high blood pressure, pain relief etc - but similar to TB

• Resistance is permanent: loss of treatment options (current and future)

• Difference between 1 year and 20+ years

• Transmission risk, resistance

• Time needed to explain difficult ideas


Printed material: comprehensive, low literacy guides• Introduction to combination therapy

• Changing treatment

• Avoiding & managing side effects

• HIV, pregnancy & women’s health

Distributed free in clinics and through support groups


Printed material: HIV Treatment Bulletin• To all HIV doctors in the UK

• Free and online

• Started as Fax

• Focus on new information etc

• uses technical medical language as this is important and appropriate


Training manual for advocates

• First used as the home study component of the STEP project in Russia.

• Now versions in Nepali, Hindi, Vietnamese, Portuguese, Bulgarian. & adapted in South Africa.

• CD4/viral load, starting treatment, infections, IDU support, coinfection etc + ‘science support’ sections


Positive handbook

• Last year we produced a “generic” booklet based on WHO guidelines

• So far it has been adapted for use in Namibia and the Great Lakes Region (Uganda, Kenya, Tanzania, etc)


Best practice in the UK.2

• Free and anonymous HIV testing

• Choice to register at any HIV clinic

• Right to a second opinion

• Free treatment

• Harm reduction support, clean needles, methadone access, free condoms etc

Etc - and patient responsibilities in exchange


Wider networks

• Email and internet: easy and inexpensive

• Medical advances quickly publicised

• Common problems: with limited resources collaborations - don’t “reinvent the wheel”

• Resources can be adapted - to be relevant

• ITPC, EATG, ICW, NGO applications to GFHTM


International Treatment Preparedness Coalition

• 600 advocate members from >120 countries

• leading civil society coalition on treatment preparedness and access issues

• Recent report: ‘Missing the Target’:

www.aidstreatmentaccess.org


‘Missing the Target’: Russia

• 3,000 people on treatment now, out of 50,000 in need.

• Positive and optimistic - a new epidemic: with GFATM and government programmes aiming for 75,000 on treatment - new opportunity

• 13 interviews with representatives of government, activist, NGO, and PLWHA organisations in Dominican Republic, India, Russia, Kenya, Higeria, South Africa


‘Missing the Target’: Barriers to treatment

･ Faulty drug procurement system

･ Lack of communication and collaboration among

providers

･ No national treatment protocol

･ Stigma against IDUs

･ Lack of support for adherence

･ Limited connection between TB and HIV

services

･ Ineffective CCM


‘Missing the Target’: Recommendations ･ Develop treatment protocols

･ Build collaborations between civil society & govt.

･ Provide training and support for human resources

･ Promote treatment uptake - literacy material

･ Use PLWHA & community expertise

･ Use monitoring to improve programs

･ Advocate for appropriate services for IDUs

･ Provide adherence support - ‘Peer educators are

particularly effective among groups facing dual stigma”

･ Improve drug procurement

･ Work against stigma


Booklet launched in Namibia

AIDS Law Unit


The Namibian group didn’t just adapt the words…


Bulgarian

Introduction to combination therapy, 2nd edition

Plus and Minus


Training manual launched in Nepal with ‘Nava Kiran Plus’

“…advocacy and literacy are needed to fight HIV/AIDS…lack of human resources, deaths, burnout and limited financial support… have been constraints…”


ARVs in

Our Lives

Treatment Action Campaign, South Africa


Copyright and contracts are obstacles

• No copyright on material

• Information should be free and accessible to people who need it

• If people don’t know about treatment they won’t come forward to use it; treatment and prevention are closely linked

• Material should be adapted to local and national situations, and be produce by and for all those groups most affected


Future projectsExisting materials

Make kits from booklets and manual with Word files of texts and illustrations and graphs separately. Include more educational exercises in training manual

New booklets

Women’s health; Hepatitis coinfection; TB coinfection Paediatrics

New training modules

Starting treatment; Changing treatment; Hepatitis/HIV coinfection; TB/HIV coinfection; Women’s health and Paediatrics

hiv i-base: importance of treatment literacy moscow - feb 2006 treatment literacy and peer support...

Documents

treatment literacy examples

treatment protocols

treatment new opportunity

simon collins hiv ibase

stigma slide

effectiveness slide

london slide

minus slide