HIV i-Base is a treatment advocacy group, HIV positive-led and committed to providing timely HIV treatment information to HIV positive people and healthcare professionals. We publish information for HIV positive people and for health workers and all our publications are available free in print and online. We are also involved in scientific and policy meetings, presentations, training and workshops. We are also connected with many other activist groups in the UK and internationally. The information service (by phone, email, and online) provides individualised information to HIV positive people and their families, friends and advocates. i-Base produce resources based on latest research. For information to be useful and effective it needs to be accurate, up-to-date and in appropriate language. For most people this needs to use everyday language. For medical professionals this needs to be more technical. We follow the latest research, review and advise on treatment guidelines, alert to updated information, and work with other people living with HIV to adapt and use new information. All i-Base materials are copyright-free for non-for-profit use. They are written to be clear, easy to understand, evidenced-based and impartial. They are distributed free at point of access and accessible to all those in need. The website now includes translations into over 35 languages produced by partner organisations globally. All our advisory boards include HIV positive people and healthcare professionals. As a peer-led project most of people working at i-Base all also HIV positive. The i-Base website is designed to be fast and easy to access., with quick and stable downloads to people using dial-up connections or low speed connections in the UK or internationally. The i-Base Q&A information service is well established with over 3000 questions online. Activists at i-Base are connected to other community and research networks and collaborate on national and international research and policy programmes. Who participates in i-Base? i-Base is part of a broad network that includes:
• HIV-positive people
• community educators and activists
• healthcare professionals
• researchers and scientists
• commissioners and purchasers; and
• policy-makers. i-Base works with activists in other countries to help develop treatment education programmes. All i-Base material is provided free and has a copyright waiver for non-for-profit use. Therefore, in addition to the approximately 40,000 patient guides printed and distributed in the UK each year, i-Base also collaborates with many international groups to produce translations and adaptations of all materials. These resources, based on i-Base publications, have now been translated into more than 30 languages, and adapted for and distributed in many different settings. These translations are very often the first publications on HIV treatment and care in a country’s national or regional language produced by an HIV positive community organisation. Background
Currently in the UK, more than 100,000 people are living with HIV, one-third of who are not yet diagnosed. Around 7,000 people are diagnosed each year. Although HIV treatment and care in the UK are high quality and accessible particularly when compared to the rest of the world, too many people start treatment later than recommended to get the optimum response. About 30% of people are diagnosed late with a CD4 count of less than 350. Treatment is safe and effective, but 500 people in the UK each year still die from HIV-related causes. Half of these are due to late diagnosis. What is treatment literacy? Treatment literacy is essential to anyone challenged with the management of a chronic health problem, whether it is HIV infection, cancer, diabetes, hepatitis, or hypertension. Good treatment information helps people to make informed decisions about when to begin treatment and what treatment to choose, to understand how medicines work, and thus to understand the critical issues of adherence, possible medication interactions, and effective management of side effects if and when they occur. During the past decade, health researchers have defined concepts such as “functional health literacy”, and have documented the link between health literacy, health empowerment, and social capital to health outcomes. For example, a study published in 2000 showed that people living with HIV who had less ability to understand medical information and instructions were less likely to be taking antiretrovirals, less likely to have undetectable viral load even with treatment, and reported lower CD4 cell counts, poorer overall health outcomes, and greater incidence of hospitalisation (Kalichman, JAIDS 2000). Even after making allowance for years of education, lower health literacy was associated with poorer knowledge of HIV-related health status, poorer AIDS-related treatment knowledge, and more negative health care perceptions, misconceptions and experiences. Literacy and empowerment about HIV treatment decisions are especially needed by people who have limited access to health care, limited economic and social power to express their needs, and limited information or networks to support knowledge about options for health. The good news is that, for most people, current treatment can lead to a normal or near-normal life expectancy, and current research is investing in better, more effective and more tolerable treatments. HIV treatment requires much more care than nearly every other type of medicine. Missing HIV doses can lead to resistance making those treatments much less effective. Resistance to one drug often generates resistance to similar drugs in that class. So, although over 25 drugs have been approved to treat HIV, they only combine to offer a few successive combinations. This shows the importance of support and information to ensure that as HIV-positive people, we are actively involved in our own healthcare, including choice of treatment. The goal of treatment is not just reducing viral load and improving CD4 counts, reducing illness and extending our life expectancy – it is for this to improve our quality of life. HIV treatment and care can be complex. But if treatment is used carefully, then any combination has the potential to be lifelong. Many healthcare systems responsible for delivering care have limitations of time, communication or trust. Quality of healthcare provision can also be an issue in any clinic. One way to tackle these challenges is to ensure that people living with HIV have a high degree of health literacy and empowerment in their interactions with the health care system, and in their decision-making related to health and HIV treatment. Globally, particularly in countries with large-scale epidemics and fragile healthcare systems, there is a far more urgent need to develop HIV treatment literacy and empowerment. This has lead to many thousands of community-based organisations, many led by people living with HIV, being engaged in producing and distributing HIV treatment information. The past decade has provided a valuable lesson: that proper access and use of combination antiretroviral therapy requires the involvement and leadership by people living with HIV. Advances in global access to treatment has been driven as much by the treatment literacy and advocacy of people living with HIV as much as it has by the good will of governments, multinational organisations, pharmaceutical companies, global philanthropy, and health workers. i-Base is a partner in these global efforts, and is proud to contribute to these on-going struggles and successes.
