Examples Direct experience of real life Produce basic

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. • CD 4/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