London Diary / HIV/AIDS In The UK – A Caring World


The story of HIV/AIDS is an oft written story yet there are more and more ways of writing it. It is a living story, ever developing for good and bad. As a reward for the Thomson Foundation EU-India Media Initiative Award for excellence on reporting on HIV/AIDS issues in India, six journalists – two each from print, television and radio – were at London for a week-long study tour.

During the week, the journalist team visited different organizations, both governmental and non-governmental, in a bid to get a clearer picture of the problems, dynamics and manifestations of the most challenging health issue of our times - HIV/AIDS.

A visit to the Department of Health, a department of State, responsible for carrying out the decisions of the democratically elected members of the Parliament, provided the much-needed introduction to HIV/AIDS in the UK, particularly London.

Kay Orton, Policy Lead – HIV & Sexual Health Promotion, Dept of Health, gave a presentation titled ‘Overview of HIV in the UK’. Kay presented some statistical reports of HIV in the UK. In 2004 7,275 new diagnoses were reported with 2,185 new diagnoses in the men who have sex with men (MSM), one of the high risk communities in the UK. Fifty-nine percent (4,287) of the new cases were heterosexually acquired infections, of which 73% probably acquired in Africa. There is also a decline in the AIDS diagnoses and deaths and rise in the number of infected people getting care.

From the presentation one can make out the rise in the incidence of HIV/AIDS among the heterosexual population and a slow decline among the MSM. The programmes and policies for HIV/AIDS in the UK are designed and conceived with the MSM and Black communities as the targeted population. The general population seemed to be overlooked conveniently in regard to HIV/AIDS. With every individual being declared as ‘risked’, such a relaxed attitude came as a surprise to the visiting journalist team. There seem to be a belief among the White population that HIV/AIDS happen only to MSM and the Black communities.

On the brighter side, Kay’s presentation showed that as per the National Strategy for Sexual Health & HIV (2001), there is reduce in transmission of HIV & STIs, prevalence of undiagnosed HIV and STIs, unintended pregnancy rates and stigma associated with HIV and STIs. There is also improvement in the uptake of HIV testing. To make testing accessible, open access services is made available where no referral from a medical practitioner is required.

Overall, the presentation showed that there is a reduction in mortality, AIDS, mother-to-child transmission and undiagnosed HIV. An increase uptake of HIV testing and access to ART were also seen. Unfortunately increasing rates of other STIs was reported in the presentation.

The visit to Terrence Higgins Trust (THT), the leading HIV and AIDS charity in the UK and the largest in Europe, provided a glimpse into the support systems and services provided to the people living with HIV/AIDS. As explained by Neil McGuinness, Outreach Manager, Health Promotion TNT, the trust’s objectives are to reduce the spread of HIV and STIs and promote good sexual health, to provide services which improve the health and quality of life of those affected and to campaign for greater public understanding of the personal, social and medical impact of HIV and sexual ill health.

Neil explained the different services provided by THT. One remarkable service was the self-management service which included
1. Recently Diagnosed Course
2. Peer Support Groups
3. GMG (Gay Men’s Groups), NDGMG (Newly Diagnosed GMG), Africa Day, Str8Talk
4. Counselling on HIV, Gay men’s sexual health, young people, African emotional support
5. Complementary therapies like massage, aromatherapy, hypnotherapy etc for general well-being of the positive people
6. Community support like buddy service, homecare service, mentoring service
Apart from the above services, THT also provides social and integrated care, community testing, STI screening and treatment, health promotion, etc.

Speaking about the initial obstacles while disclosing one’s status, Neil said, “People often say that ‘Oh, HIV is like diabetes, it’s a manageable disease’ with a shrug. But listen to me, if you are out with someone and you said ‘I am diabetic’, the most will be that the person will say I better not put sugar in his tea but if you say ‘I am HIV positive’ chances are high the person will go away”. One thing was clear that stigma and discrimination attached to HIV/AIDS is a universal problem, in the developed as well as developing world it is present, though of different magnitude and manifestation.

Genevieve Clark, Director of Communications, THT, observed that 20 years after the virus came under public scrutiny, in the UK a decline in the public and government priority to HIV/AIDS can be seen due to decrease in the panic. She said that with the number of PLHA tripling since 1997 in the UK, there are new issues for the long-term survivors with no cure in the horizon. Maintaining that HIV/AIDS is the fastest growing serious health condition in the UK, Genevieve said that unfortunately HIV is the least popular charitable cause and not popular politically. She also hinted at the growing ignorance about the virus among the young people.

Some of the key issues for HIV today in UK are the prosecution of PLHA for transmitting the virus, migration and HIV, late diagnosis for some groups leading to unnecessary mortality, access to treatment and the continuing stigma.
Coming to the UK’s international response to HIV/AIDS, Genevieve said, “Our government is good internationally, doing lot of good turns. But the reality here is different.”

Aidan Keightley, deputy chief executive, UK Coalition of People Living with HIV and AIDS (UKC) said that there is no direct funding for HIV and AIDS in the UK and no specific fund is earmarked in the government budget. “Only a lump sum in the sexual health budget is provided for HIV and AIDS.” He also maintained that STI is bigger problem than HIV/AIDS.

UKC publishes the Positive Nation, one of the leading magazines about HIV/AIDS and PLHA. One interesting fact as told by Aidan was that the biggest readership of Positive Nation is the US army returning from Iraq and Afghanistan. UKC also adopts some innovative approaches to address HIV/AIDS and its outcomes. Apart from building confidence of the PLHA, UKC intervenes in the gauging the employment gaps, provides gymnasium and gardening facilities to support people and help normalize their lives.

Aidan candidly said, “Stigma and discrimination has just arrived in the UK in many instances.” Parminder from Naaz Organisation London said that the worst case of stigma is the criminalization of HIV/AIDS. She said that already many people were prosecuted for HIV transmission in the UK but not for other STIs which have equally serious health complications.

The next visit was to DFID, Department for International Development. Malcolm McNeil, health advisor, Latin America and Carribean and Benedict Dav, health advisor, Africa gave an overview of HIV/AIDS in the concerned countries. Upon being asked about where the world is today on testing, Malcolm said that the US initiative on a global testing day is still on. He said that DFID believes that voluntary testing and voluntary counseling should be actively supported. He also observed that spending on prevention has decreased and spending on treatment has increased in many countries.

Rob Worthington, AIDSPortal Manager explained briefly about the portal which is a global information sharing network that is driven by people and facilitated by web-based tools.

The fourth day of the study tour was the Crusaid Poverty and HIV Conference 2006 at the Great Eastern Hotel, Liverpool. Next stop was International Community of women Living with HIV/AIDS. With 4000 members spread in 138 countries, ICW is a global community of positive women. Carmen Tarrades, membership development officer, ICW said that since there is high increase of STI, it is being presumed that HIV/AIDS will be another risk. She also spoke about the common prevalence of putting the blame on the positive people in most parts of the world for transmitting the virus, often forgetting the responsibilities of the negative people, saying, “In this age, twenty years after HIV/AIDS’s debut, I feel there is no excuse for becoming positive.”

Another interesting point of discussion at ICW was condom. The introduction of condom in a relation where condom use was not established could be seen as an accusation or confession and can even lead to some kind of disruption to trust in the relationship. Luisa of ICW pointed out that as long as there is power differential in the society and in any relationship, there will be no effective prevention of HIV/AIDS.

The study tour ended with a visit to the London School of Hygiene and Tropical Diseases. Dr Shabbar Jaffar of the Infectious Disease Epidemiology Unit, made a presentation on evaluating strategies for delivering HIV treatment in rural Africa. Dr David Ross of the School presented the evidence from developing countries on what works in preventing HIV/AIDS in young people.

Coming back to India, I would like to make a feeble attempt at comparing HIV/AIDS in the UK and India in general and Manipur in particular. There are lots that India can learn from the UK in their approach and dealing with the issue of HIV/AIDS. They are now at the stage of addressing human rights violations within context of HIV/AIDS. The focus there is more on getting the positive people back to mainstream life, be it job or health. One interesting aspect was the innovative way used in ensuring the holistic wellness of the positive people through physical, mental and spiritual wellness. The stigma and discrimination was also of a different nature in the UK. Being open about one’s sexuality and sexual orientation, infection through sexual route is considered a ‘better way of getting infected’ than injecting drug. One interesting and alarming fact was the general attitude of the people that HIV/AIDS happen only among the MSM and Black communities.

In spite of all the progress and development, one gets easily disturbed at seeing the gap between the infected and affected population and the media. For the British media HIV/AIDS is still a sensational story and the negligible reportage on the issue is, to say the least, negative. The power of media has not been used effectively.

In India the media has woken up to the realities of HIV/AIDS, that there is more than an attention grabbing story. The Indian media, specially the regional media of those regions which have high HIV positive population, are getting increasingly sensitive to the issue. Many non governmental organizations are focusing on training the media and building the capacity of media to address HIV/AIDS positively, constructively and to ease the already high stigma and discrimination.

The EU-India Initiative on HIV/AIDS is one such sincere effort. Media personnel are specially trained through theories as well as practical interaction with PLHA to make them understand the need for looking beyond the one story and see the humane side of the epidemic.

In Manipur, some NGOs are actively taking up the responsibility of building the capacity of media. One such example is the Manipur Network of Positive which have taken the initiative in this direction and formed a Media Cell. This Media Cell is open to all representatives from different media. The formation of the cell has been responsible for smooth and easy access to information on the issue as well as the PLHAs has easy access to the services media can give.

Compared to what is being done in India, the media is the UK seems to be insensitive to the PLHA, often giving the impression of being hostile. From the interaction with PLHA and organizations working for HIV/AIDS in the UK, one can easily make out that media in the UL is still negative towards the HIV positive people.

Issues and priorities are different, so there is a world of difference in the story of HIV/AIDS in the UK and India. The tour was very well-organized and enriching. We got to learn many new aspects of the epidemic and fortunately we got to share some stories that were still unheard in the developed world.