People Diagnosed with HIV

Private Members' Business – in the Northern Ireland Assembly at 12:30 pm on 29th November 2016.

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Photo of Robin Newton Robin Newton Speaker 12:30 pm, 29th November 2016

The Business Committee has agreed to allow up to one hour and 30 minutes for this debate. As two amendments have been selected and are published on the Marshalled List, an additional 15 minutes have been added to the total time. The proposer of the motion will have 10 minutes to propose and 10 minutes to make a winding-up speech. The proposer of each amendment will have 10 minutes to propose and five minutes to make a winding-up speech. All other Members who are called to speak will have five minutes. Before we begin, the House should note that the amendments are mutually exclusive, so, if amendment No 1 is made, the Question will not be put on amendment No 2.

Photo of Gary Middleton Gary Middleton DUP

I beg to move

That this Assembly notes the increasing number of people diagnosed with HIV in Northern Ireland, year on year; is concerned at the levels of stigma experienced by people living with HIV; acknowledges the need for a new campaign to promote awareness and prevention, specifically tailored to Northern Ireland; commends the work of Positive Life, Northern Ireland's only dedicated charity working to support people diagnosed with HIV; and calls on the Minister of Health to support this organisation in the development of a centre of excellence at its new headquarters.

I propose the motion, which stands also in the names of Paula Bradley and Trevor Clarke, on behalf of the DUP. We believe that it is an important and timely motion that will go some way, I hope, to raise further awareness, reduce the stigma and recognise the very positive work that is ongoing in the area of HIV. It is also fitting that we do so today, which is World AIDS Day 2016, and that we wear the red ribbon which, in itself, is a powerful symbol to challenge the stigma around AIDS and HIV.

World AIDS Day can be a difficult and emotional time, when people reflect on the damage that the virus has caused and the lives that have been lost as a result. However, it is also an appropriate time to recognise the progress that has been made and, more importantly, focus on the work that is still to be done in preventing the spread of the virus, improving the treatment and health of people infected by it and eradicating the stigma and prejudice that are still too often associated with HIV.

In October of this year, research revealed that there were now over 900 people living with HIV in Northern Ireland. That is an increase of 15% on the 2015 figure. The 103 cases of HIV diagnosed last year is the highest number to be recorded in a single year. Not only is that a worrying trend, it highlights the need for more to be done to address the condition and ensure that there is early diagnosis and treatment of those affected. It is estimated that there are hundreds of others who do not know that they have HIV.

Sadly, there is still a stigma attached to HIV that affects the people living with it. A recent survey indicated that, of those living with HIV in Northern Ireland, 61% felt ashamed of their diagnosis, compared with 49% elsewhere in the UK. That same survey revealed that 68% of people in Northern Ireland diagnosed with HIV had a negative self-image, compared with 56% elsewhere in the UK. It is difficult enough for those suffering with the condition to seek diagnosis and treatment, and it is unacceptable that that is made even more difficult by a lack of understanding around the condition and its effects. To challenge some of the stigma, it is important that we recognise that, of the people currently living with HIV, just over 40% of those cases involved heterosexual contact.

Stigma increases the likelihood of late diagnosis. Late diagnosis can have serious implications and can result in increased risk of other conditions, such as tuberculosis, pneumonia and some cancers. It also limits treatment options and affects the overall prognosis. Given that treatments can now mean that a person who is diagnosed early with HIV can reasonably expect to live a long and healthy life, it is hugely important that people who may be at risk test early. Crucial to that is the need for people who work in our health service to be able to recognise the risk factors and symptoms of early HIV infection. It is essential that those on the front line — our GPs and nurses — be given the necessary support and advice not only to deal with those who have been diagnosed with HIV but to prevent HIV. The fact that, as I mentioned, hundreds of others who have HIV are unaware that they have the virus is deeply worrying. More information on prevention, early diagnosis and treatment would help alleviate the fear, destigmatise the testing and, I hope, promote a more confident approach to those who present for testing.

Through the motion, we commend the work of Positive Life and the role that it plays in supporting those with HIV, advocating on their behalf, working to destigmatise HIV and ensuring that those affected are treated with respect and dignity and live a healthy life. As a member of the all-party group on sexual health, I have seen at first hand how Positive Life interacts and engages with a wide range of stakeholders to ensure that their issues are heard and how it works collectively with those in the sexual health field. We must do all that we can to support it in its work to promote awareness and prevention. There is a clear need for a new campaign to promote such awareness through outreach, counselling, harm reduction and education. We need to challenge the old perception and the old stigmas and ensure that people living in Northern Ireland understand what it means to live with HIV here. We encourage the Minister to support Positive Life and the work that it does and to assist it in the development of a centre of excellence at its new headquarters.

It is also fair that we recognise the work of the Public Health Agency (PHA) and the information that it provides on sexual health issues, including HIV, and the work and awareness training that it carries out throughout our trusts.

We need all the many health and social care organisations and volunteer sector organisations to continue the great work that they do. However, we need to work more closely together, encouraging greater collaboration and ensuring that the Department gives a clear strategic direction in this important area. I commend the motion to the House.

Photo of Robin Newton Robin Newton Speaker

Mr Eamonn McCann is not in the Chamber to move amendment No 1. I therefore call Paula Bradshaw to move amendment No 2.

Photo of Paula Bradshaw Paula Bradshaw Alliance

I beg to move amendment No 2:

Leave out all after the third "HIV;" and insert "calls on the Minister of Health to support this prevention work by bringing forward proposals to ensure that everyone in Northern Ireland has access to vital pre-exposure prophylaxis medication on the same basis as the rest of the United Kingdom; and further calls on the Minister to support Positive Life in the development of a centre of excellence at its new headquarters.".

I thank the DUP for bringing this important motion to the Chamber. We clearly welcome the motion. I visited Positive Life's new centre in my constituency during the summer and heard in detail about its range of services, programmes and campaigns. I am delighted to see the organisation get the credit and exposure that it deserves today.

We were very cautious about the amendment that was to be proposed by People Before Profit. That is partly because it merely reflects the motion and, in effect, restricts its scope — we must not move away from the fact that HIV can affect anyone, not just people in the LGBT sector — but mainly because it does not include in the equation the vital issue of the pre-exposure prophylaxis medication, commonly known as PrEP. I therefore ask the proposer of the first amendment to consider allowing it to fall to allow the issue to be advanced in order to demonstrate that the Chamber is not just about words but action.

Last year, 103 people were diagnosed with HIV in Northern Ireland. That is 103 people and their families who did not know how their lives — their relationships, friendships, employment prospects and life chances — were to be affected.

We can reduce that number. One way of doing that is through medication designed for people who do not have HIV but who are at a very high risk of getting it. That medication is called pre-exposure prophylaxis (PrEP), a daily pill that has a very high efficacy in preventing infection.

We need to be realistic. People who have contact in certain circumstances with people who are HIV positive, not least those who are in relationships with them, are at risk. I strongly support the belt and braces mantra of Brook — a voluntary health and well-being association — that PrEP should not be seen as a replacement for the need for condoms to prevent the spread of sexually transmitted infections (STIs) and, obviously, crisis pregnancies.

I will give a bit of background on, and UK context to, PrEP. It was established in the courts in August this year that NHS England has the power to commission PrEP and that it would cost about £15 million a year. In Northern Ireland terms, that means that the cost would be about £500,000. The average lifetime cost of treating someone with HIV is set at around £300,000, so even if people do not like the thought of this in moral terms, I ask them to look at it in economic terms and the cost to the public purse.

Supporting our amendment does not mean that PrEP will become available immediately. Work has to be carried out into pilot projects in England to assess how it can be commissioned most effectively and most appropriately. That, essentially, takes away any risk that might incline people to be cautious at this juncture, as there will be time to see how it could be implemented in the overall transformation of health and social care services in Northern Ireland.

I will make two points on how the amendment ties in neatly with that reform. First, PrEP is a classic case of prevention in action and is exactly in line with the Bengoa report and the Minister's road map. We cannot claim to be moving towards prevention being a fundamental part of our health service if we do not stand proactively at the forefront of issues in support of preventative medication such as this.

Secondly, the Minister could be proactive. Indeed, she may even be able to fulfil one of her innovation projects over the next few years by offering to get involved with NHS England's assessment process. I do not know how viable that would be at this stage, but if we wish to take that idea forward I cannot see NHS England not agreeing to it.

With regard to the motion, which we have left intact in our amendment, I re-emphasise that the rise in the number of people being diagnosed might indicate that more people are coming forward. Whatever it indicates, it shows that more people would benefit from a prevention programme that includes appropriate medication. That is a point that our amendment reinforces.

I also warmly welcome the emphasis on the need to remove the stigma, an issue mentioned by my colleague on the DUP Benches. Perhaps we are still victims of the advertising campaign of the 1980s, which had such a significant impact but which no longer reflects the reality of the condition. An awareness campaign, recognising that the stigma can be quite marked in Northern Ireland, would be very helpful.

The amendment serves to reinforce the motion and ties in with the themes highlighted by Professor Bengoa, and I hope that the Assembly gives it its full support.

Photo of Catherine Seeley Catherine Seeley Sinn Féin

I welcome the motion, which we will, of course, support.

World Aids Day takes place this week, so the motion is timely and will, no doubt, be welcomed by those impacted by the disease and organisations such as Positive Life and the Rainbow Project. The number of people living with HIV has reached its highest ever level: almost 1,000 people in the North know that they are living with HIV. However, what is most concerning is the high number of people who are unaware that they have HIV. We need to tackle the stigma and misunderstanding that surround HIV, such as the belief that HIV is a virus that solely impacts on gay and bisexual men, which, of course, is not true.

Those suffering often do not share the fact that they are living with a life-changing condition that has an ability to impact on their mental well-being and overall quality of life, but we must also increase awareness of the causes, symptoms and living with HIV. That is an obvious area for cross-border cooperation because HIV, as with many issues, does not recognise borders and impacts on men and women North and South equally.

In response to a question for written answer regarding departmental actions in tackling the stigma, the Minister of Health informed me of a recent workshop to consider key sexual health issues; HIV awareness training in health and social care trusts; and the funding of a number of voluntary organisations that raise awareness and provide information and support to those living with or affected by HIV. All this is positive, and evidence that the Minister is committed to tackling the stigma and supporting those living with HIV. However, as with many issues, this issue spans other Departments. I recently submitted a question to the Minister of Education to ask what provision was made for the teaching of sexual health in schools. Education in schools around sexual health, sexually transmitted infections and the prevention of HIV is key. Through education and increased awareness, we must encourage people to look after their sexual health — in particular, young people.

In the North last year, 9,600 people were diagnosed with STIs — further evidence that we need to educate to ensure that all of us, including young people, make positive choices about our own sexual health. Sexual health information should not depend on the ethos of the school or opinion of individual teachers.

We need to further encourage testing. Whilst I welcome the introduction of home HIV testing kits, they undoubtedly require improvement to ensure ease of use. I recently met Positive Life. I commend its work in not only supporting those living with HIV but increasing awareness and shining a light on the fact that so many people are totally unaware that they have HIV. I also commend the sterling work of the Rainbow Project.

As a society, we must respond to this and develop services and information to meet the needs of those living with or affected by HIV, as well as those living unaware. Finally, to those suffering from HIV but too afraid to speak out: talk to someone. Support services are available, and people are willing to listen and help.

Photo of Jo-Anne Dobson Jo-Anne Dobson UUP 12:45 pm, 29th November 2016

I welcome the opportunity to speak on this motion. I appreciate and agree with the call in the motion:

"for a new campaign to promote awareness and prevention", of HIV. Indeed, a renewed and refreshed campaign has been long lacking.

In supporting that, it is important to look at the work already undertaken, led by the Public Health Agency (PHA), and what can be learned from that. The RQIA has, since 2013, been calling for the development of a regional clinic network to drive improvements in outcomes for patients and service users. No one is denying the need for a clear strategic direction to be set for sexual health services and agreed standards for service delivery. I hope that this motion brings closer that ambition called for in 2013.

In April 2012, the Health Committee received a briefing from the PHA on the sexual health promotion strategy and action plan for 2008-2013. I understand that the strategy was subsequently extended until the end of December last year. The strategy's fifth key priority area was HIV and STI prevention, and I understand that involved important work with high-risk subgroups.

As the motion states, cracking the stigma around seeking help is one of the major challenges, if not the major challenge, for any strategy. I pay tribute to those working in the trusts to deliver HIV awareness training, which contributes greatly to addressing that stigma. Bearing in mind, however, that one of the key objectives of the strategy was to reduce the incidence of STIs, including HIV, in the 10 years since 2004, we have seen a 47% increase in new HIV diagnoses. That is on the back of an overall reduction of 20% across the United Kingdom. That said, the prevalence of HIV diagnoses in Northern Ireland remains lower than the other regions of the UK.

I want to take a few moments to focus on the RQIA's October 2013 review of specialist sexual health services in Northern Ireland.

The report made 16 recommendations in total. It concluded:

"Recent indicators for sexual health in Northern Ireland show concerning rises in sexually transmitted infections (STIs), including HIV."

Amongst its recommendations were the development of standards for services; the development of a managed clinical network; improvements in what they termed, "fragmented" commissioning arrangements; and workforce planning to address staffing levels that were:

"impacting on the ability to provide more locally accessible and integrated services."

These are all issues that warrant consideration in looking to future services to prevent the continued rise in the number of people diagnosed with HIV in Northern Ireland.

In conclusion, I appreciate that the Minister acknowledges that the PHA, along with stakeholders, undertook a major sexual health workshop last month and that she will consider the outcome of and proposals from it. However, I hope that, in response to today's motion, she will acknowledge the clear need for a renewed and refreshed sexual health promotion strategy that takes on board the recommendations made by the RQIA in 2013 and recognises the need to address the concerning rises in diagnoses in recent years in Northern Ireland. It would also be helpful for us to receive a timeline within which such a refresh and renewal could take place.

Photo of Trevor Clarke Trevor Clarke DUP

I support the motion. As already noted by one of the Members who spoke today, Thursday is World AIDS Day. I should put on record that we tabled the motion as close to Thursday as possible in order to give the topic the most impact. When I came here in 2007, I would have dismissed the possibility that I would speak about HIV today, because I was one of those who did not understand the stigma attached to it.

I am not trying to get a rise out of Mr McCann when I say this, but I feel that his amendment, had he moved it, would have been unhelpful to people who, like me, were ignorant of the fact that this disease can affect heterosexuals. I have to put on record my thanks to Jacquie Richardson from Positive Life. Meeting her for the first time was a turning point for me, having been ignorant of the fact that the disease also affects heterosexual people. For that reason, I have no difficulty supporting what the motion calls for. The work that Positive Life did in changing my opinion — not only my opinion but that of many others — helped to remove the stigma.

Mr McCann's amendment would have added to the stigma. Maybe those who are bisexual or gay do have a statistically higher risk, but his amendment brought that into the equation and amplified it. I think that we should talk about all who suffer with this condition; not just those who have the highest risk. For that reason, I support the work that Positive Life does, and I support the call for a centre of excellence. The work that the organisation does helps to dispel the myths. My colleague referred to the 61% of people who feel ashamed — nobody should feel ashamed because they have this condition. They need the support of us and others to try to overcome that so that they can live as long and normal a life as possible.

I do not want to stir things, but there was an interesting TV programme on last week about the end days of Freddie Mercury and his battle with the disease. When it came on, I thought, "I am not going to watch this", because the stigma of what the disease is about was starting to come back, but I watched it to its conclusion. I know that Freddie Mercury died relatively recently, but one of the things that struck me — this came across in what Paula said about drugs — was how what can be done to help people who suffer with HIV has moved on. We should be giving people hope that things can be done to extend their life. Not one of us in the Chamber today knows how many days we have. Not one of us knows what illness we might have as we stand here today. We should look to the future and try to live as long and as healthy a life as possible. For me, whether it be through drugs or other support, we should support people with HIV, give them a better quality of life and remove that stigma because, as I say, no one should be ashamed because they have this condition. Many of us could have life-limiting diseases of other sorts, and we will not feel ashamed about that. We will want to live our life to the fullest. The work that Positive Life has done will make it easier for people who have the condition to live a fuller life, and they will know that they have support mechanisms in that organisation. I support the motion.

Photo of Ian Milne Ian Milne Sinn Féin

Thank you, Mr Speaker, for the opportunity to speak on this very important motion. While noting the concerns expressed by those who tabled the motion about the level of stigma experienced by people living with HIV, I put on record my support for any new campaign that promotes awareness and prevention and, more importantly, that is tailored to our local needs. I also commend the good work being carried out in this field by organisations such as Positive Life and Rainbow.

It is important that we place on record our support to show that we care for people living with HIV. Making all efforts towards the development and improvement of the service to help people living with HIV is part of this. How we organise our health service matters, including how we better resource HIV prevention. We also need to support those people in our community who are living with HIV on quality-of-life issues, including social protection and positive mental health.

We must not understate the importance of testing for HIV to ensure an early diagnosis. As stated by the Public Health Agency, people respond better to treatment when they are diagnosed at an early stage of disease. The agency also stated that knowing your HIV status is the key to effective treatment and the prevention of onward transmission. HIV stigma is a key obstacle to HIV treatment, prevention and support. Sixty-eight per cent of respondents from the North of Ireland who contributed to the 2015 HIV stigma index stated that they had a negative self-image, so it is most important that we create an effective public awareness campaign in an effort to tackle the misconceptions around HIV. I support the motion.

Photo of Robin Newton Robin Newton Speaker

Members, the Business Committee has agreed to meet at 1.00 pm. I propose, therefore, by leave of the Assembly, to suspend the sitting until 2.00 pm. The first item of business when we return will be Question Time.

The debate stood suspended. The sitting was suspended at 12.57 pm.

On resuming (Madam Principal Deputy Speaker [Ms Ruane] in the Chair) —