“In the 21st century, knowledge is the key element to improving health. In the same way that people need clean, clear water, they have a right to clean, clear knowledge”
- Sir Muir Gray
HIV i-Base is an HIV treatment activist organisation, founded in 2000. We work in the UK and internationally to ensure that people living with HIV are actively engaged in their own treatment and medical care. We also work to ensure that people living with HIV are included policy discussions about HIV treatment recommendations and access.
i-Base is led and staffed by people living with HIV/AIDS, and our central aim is quality of care and access to health for all HIV-positive people.
People living with HIV are therefore at the centre of both the organisation’s mission and capacity. i-Base is well known for its published and web-based information, but we also believe that learning and change are best facilitated by talking, meeting and interacting directly. More than half of our staff time and budget is dedicated to training and workshops, presentations and participation at scientific and policy meetings, and one-to-one advice and technical assistance to people living with HIV and their advocates.
As the foundation of all of our activities, i-Base creates and shares resources based on up-to-date HIV treatment information in formats and languages that are appropriate to different people. For information to be useful and effective it needs to be accurate, up-to-date and in appropriate language. We collaborate with partners to follow the latest research, review and advise on new treatment guidelines, alert to updated information, and work with people living with HIV to adapt and use this new information.
Accessibility of information is also central to the i-Base mission. All materials are therefore produced without copyright restrictions for non-for-profit use. They are written to be clear, easy to understand, and impartial, and distributed with the intention that they be free at point of access and accessible to all those in need. All resources are developed and reviewed by advisory boards that include HIV-positive people and healthcare professionals. To complement the large number and volume of printed documents and other resources, i-Base maintains a fast clean web site that offers quick and stable downloads to people using dial-up connections or per-minute internet café access in the UK or internationally.
i-Base is a well-established resource in the UK, with about half of all enquires coming from London and half from outside of. Users of our services reflect the demographics of HIV in the UK.
i-Base is also increasingly contacted from outside the UK as a source of information and technical assistance, and has been recognised by WHO, UNAIDS, UNESCO, and other international agencies as an important source of training and patient-centred information on HIV treatment. The expansion of Global Fund, PEPFAR, and other funding streams has meant that hundreds of HIV treatment programmes are being created and scaled up in Africa, Latin America and the Caribbean, Eastern Europe and Asia.
Who participates in i-Base?
Building from the experience and credibility of people living with HIV, i-Base works with several intersecting constituencies, including:
- HIV-positive people who are making complex decisions about HIV-related treatment and care;
- community educators and advocates who develop and disseminate treatment information, education, and advocacy mobilisation efforts
- medical and healthcare professionals who require up-to-date treatment information for their clients; and
- policy-makers who seek input about the needs, programme options, and best practices for HIV treatment information and access.
i-Base has been asked by advocates in other countries to help develop these treatment education programmes. All i-Base material is provided free at point of access and has an automatic 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.
Currently in the UK, more than 70,000 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 new HIV diagnoses are in late-stage HIV disease with a CD4 count of less than 200.
Although treatment dramatically reduced the number of HIV related deaths, around 500 people in the UK each year still die from HIV-related causes, half of which are directly related to late diagnosis (see British HIV Association (BHIVA) audit).
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.
Information about how we produce treatment guides and the importance of direct and easy to understand language. This includes information on how to write non technical medical information that may be useful as a resource for other organisations.
Last updated: 11 August 2013