30 years on, 30 million with HIV. When will the stigma end?

Dr Sima Barmania

107177142 300x229 30 years on, 30 million with HIV. When will the stigma end?Three decades into the epidemic and with over 30 million currently living with HIV, the issue of stigma and discrimination still remains at the fore for people living with HIV.

Furthermore, many social commentators vehemently believe that in particular faith groups and religious leaders have either caused or at least exacerbated HIV prejudice. It is fair to say that whenever HIV and any reference to religion occupy the same sentence one can guarantee that an emotive discussion will surely follow.

The Pope’s latest statement condoning condoms by male prostitutes who are HIV positive, warmly welcomed by those in health and development has mitigated the acrimony somewhat. But, nevertheless decades of religious leaders conveying misinformed and misjudged information about myriad aspects of HIV has left many others, understandably irate.

However, equally frustrating for those such as myself who work in the HIV domain, is the knowledge that there are groups, organisations and individuals who do provide support and are making a positive contribution to the lives of people living with HIV that are religiously affiliated to some degree. This is both true here in the United Kingdom and overseas.

33 year old Sita, an Indian Christian who lives in London is keen to narrate her experiences: – She was diagnosed with HIV in 2004 during her admission to hospital with tuberculosis. Emaciated, alone and depressed, disclosing her status to anyone in her native India was simply not an option for fear of being permanently ostracised. It was 4 months before she received a single visitor to her hospital bed, a hospital porter who organised a visit by a Christian lady.

Sita a lifelong practicing Christian recounts the lady’s welcoming and caring demeanour:”I didn’t feel judged…and was made to feel that this [HIV] could happen to anyone”. For the following 4 months this Christian lady provided invaluable encouragement, visiting regularly, bringing food and clothes all the while without specifically talking about religion as such.

Later Sita was introduced to the Pastor of the Church. She felt so reassured that she was able to disclose her HIV status straight away.  Sita poignantly explains that these people made her feel like a normal person once again – a “human being”. She was particularly touched by the fact that they had no trouble even drinking from the same cup as her. She adamantly explains that it was “not sympathy” that she received but the courage to overcome her own self-stigma. She resumed her pre-diagnosis activities: becoming part of the life of a new congregation and volunteering. She feels that being part of this community has helped to ease her depression.

Sita also attributes her recovery to Parminder Sekhon, Deputy Director of Naz Project London, a sexual health charity that caters to Black and Minority Ethnic Groups (BME); having overstayed her visa due to her hospital admission she was not able to receive assistance from other charities.

NPL’s distinguishing feature is an in depth understanding of the cultural and religious needs surrounding the BME clients, explains Khaiser Khan, the client coordinator. He also organises a Muslim support group for people like Huda, whose experience he relates as typical: – She was a young Somali Muslim lady who had experienced abandonment by her friends and peers because of her status. Khaiser, a Muslim himself explains that although hospital support was available there still was the absence of the kinship that she needed with those that could understand the complex stigma of being a Somali Muslim with HIV.

Reverend JP Heath is all too familiar with the intricacies and multifaceted nature of stigma. He is himself HIV positive, diagnosed over a decade ago and is also an Anglican priest. He founded INERELA, an international network of religious leaders living with, or personally affected by HIV.

Speaking in September at an interfaith HIV summit in India, co-hosted with UNAIDS addressing stigma and discrimination, he speaks succinctly and with gravitas. Aside from the self-stigma, the familial and social stigma, he also highlights the “faith specific stigma” which presumes that a person living with HIV cannot become a religious leader in the community…” But he asks in a challenging tone:  “does the HIV running through my blood affect my ability to pray?” By all accounts, it certainly has not done so thus far and since disclosing his status he has drawn on his own experience to spread awareness and dispel misconceptions; like the denial that “we don’t have HIV in our community”. It seems to be an assumption that is ubiquitous to many communities, yet also rather erroneously held.

In reality, HIV is as indifferent to religion as it is to race, gender and sexual orientation and despite major advances in anti-retroviral therapies that can now offer decades of physical well being, it is time for similar advances in attitudes, so that stigma and discrimination may no longer prevent people diagnosed with HIV from living their lives as truly social and spiritual beings.

Dr Sima Barmania is a medical doctor from London with an Intercalated degree in Community health science and a Master’s in Public Health from The London School of Hygiene and Tropical Medicine. She has branched out of clinical medicine to focus on her passion for global health and is due to undertake a PhD early next year.

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  • Ian

    Thanks for a thought provoking and non-judgemental article. Faith is often a taboo subject amongst the chattering classes and the importance of faith in the subject of HIV is often underplayed – if religion is part of the problem it is also without doubt part of the solution. Many religions have often focused on reaching out to society’s marginalised – Jesus used to hang out with tax collectors and prostitutes, after all – but because most religions advocate sexual abstinence or certainly temperance, STD sufferers have borne a stigma particularly amongst their religious congregations. This is now changing as the responsibility to compassionate to those in need begins to take precedent at the expense of the desire to pass judgement and condemn. Given the locations of many places of worship which can be situated deep within even the most remote communities, one has to wonder about the possibilities of harnessing their distribution channels to provide sexual education and dispel misconceptions surrounding HIV sufferers, the potential for change and improvements in the lives of HIV sufferers is huge.

  • harleymc

    “It is fair to say that whenever HIV and any reference to religion occupy the same sentence one can guarantee that an emotive discussion will surely follow.”

    What a shame that’s all the article held. Nothing of substance about the title.

  • SmileyPip

    Diasgree with harleymc. I enjoyed the article and thought it was particularly relevant at the moment in light of the Catholic Church’s recent statement. The influence of religion in HIV is huge, particularly in Africa. I believe that the stigma is still predominantly driven by ignorance and discrimination related to old rhetoric that ‘HIV is a disease of homosexuals, and homosexuals are bad people in the eyes of the Church’. This stance is of course nonsense (in every sense of it) , and if you look at who HIV affects in Africa you can see this immediately. Until this myth is dispelled I think the stigma will remain unfortunately and people will not approach medical care for fear of being labelled. This is why education in the Churches and Congregations (of all faiths who have similar views to the Pope) is so important.

  • scampy2

    It will never end until those affected stop breeding like dogs.

  • Muneer Panjwani

    Thoroughly enjoyed this article on a topic that needs more prodding.

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