Caroline Nokes – 2022 Speech on World AIDS Day

The speech made by Caroline Nokes, the Conservative MP for Romsey and Southampton North, in the House of Commons on 1 December 2022.

It is a pleasure to follow the hon. Member for Brighton, Kemptown (Lloyd Russell-Moyle), who speaks with such passion, knowledge and indeed experience. I vividly remember being in the Chamber four years ago when he spoke of his own diagnosis, and of how he had coped with the emotional stress and trauma and the physical challenges. Of course it is always a privilege to follow any Member who speaks with such a depth of knowledge.

I apologise for the fact that my speech will focus almost exclusively on women. As Chair of the Women and Equalities Committee, I am very conscious that some of the people who are diagnosed at the latest stage, and some of those who are afraid of going for a test, are women. It has always been a humbling experience for me, in my role as Chair of the Committee, to meet those women living with HIV who have spoken of the barriers that they felt prevented them from taking a test. That is why I commend the work done by organisations such as the Terrence Higgins Trust and, indeed, the all-party parliamentary group, which has always led the way in trying to break down the stigma associated with testing.

There should be no such stigma. After all, there has been no stigma attached to covid tests over the past two years; and making oneself aware of one’s own HIV status is actually one of the most empowering actions that an individual can take. That is why, as Chair of the Select Committee and indeed before that—I was about to say, “I have never been afraid”, but that is the wrong term to use. I have always been keen to ensure that I use my role to emphasise to others that it is perfectly okay to go and get a test, and it is also much easier to do so nowadays than it used to be.

I was going to say that I had never been afraid, but I vividly recall that Simon Kirby, the hon. Gentleman’s predecessor as Member of Parliament for Brighton, Kemptown, used to arrange in this place, every year, a testing session for Members. I remember Simon telling me, years ago, “Nokesy, you have to go along and get a test”, and I remember rolling my eyes and saying, “I don’t really fancy that.” I was rather terrified of the prospect of going. However, I also remember coming away after the test and thinking, “That was the right thing to do. I now know that I don’t have HIV, so I can relax about that, but I also know how important it is to talk about it.”

I remember, too, the grief that I was given on social media from the ill-educated, ignorant and—to be frank—bigoted people who used that as a stick with which to beat me: “Ooh—why did she need an HIV test?” Why did I need one? First, to know, and secondly, to be a voice for everyone else who felt anxious about getting an HIV test. I wanted to tell them, “There is nothing wrong with it; there is no stigma attached to it; you are doing it for your own wellbeing.” That is why I now act as a champion for all women, telling them how important it is to go and get a test.

The hon. Member for Brighton, Kemptown made a very important point—I dwelt on it a little when I was thinking about what I wanted to say—about the prevalence of online and postal tests. I think that they are great innovations. Earlier this year, however, I received a little package through the post with the message “Give HIV the finger”—which was a wonderful message, but it was hard to get the required amount of blood out of my finger, and I felt slightly concerned about whether it was enough. I thought, “Will this be effective? Who knows?” For me, much of that process was about being photographed proudly holding up the box, having taken an HIV test. However, another part of it was to do with the fact that we need these testing programmes to be effective, we need people to be confident enough to use them, and we need them to be available in all sorts of locations.

That brings me to my next point. We need people to be culturally competent and aware. We know from statistics that a third of the people living with HIV are women, and we know that 25% of the new diagnoses are in women, but we also know of the prevalence of HIV in black African communities. Covid taught us—and I am an absolute advocate of this—that we must learn the lessons of really difficult experiences. We learnt through covid about the importance of speaking to people in languages that they understand, in a way that they can relate to, on the media channels that they instinctively use. It is no good broadcasting our public health messages exclusively on the BBC; we have to find different channels in order to communicate with the audiences who are most at risk, where the prevalence is highest, and where people might not be engaging with the traditional forms of media that you and I, Madam Deputy Speaker, might use. That is a really important message that I would like to give to NHS England and the Department of Health and Social Care. We must keep up the pressure, and talk to communities in which there is high prevalence and where there might be barriers, cultural or otherwise, to getting a test.

I have an important wider point on research. It was crucial that a great deal of the research on HIV and AIDS be done on those who were most likely to be affected by them, so of course, a massive wealth of research has been done on men. I absolutely acknowledge that that was right, but there are knowledge gaps when it comes to women with HIV and which drugs might be most effective for them. There is certainly still a barrier to women accessing PrEP; that is borne out by the numbers. They are simply not using it. We have to understand why that is, and how effective that drug and indeed other HIV drugs may be on women. We have to make sure that the DHSC and NHS England not only have sufficient data, but disaggregate it, so that it can be broken down by gender and ethnicity. Often when I talk about health, I find myself complaining and browbeating others about the lack of data that is relevant exclusively to women, the lack of women coming forward in drug trials, and the lack of research done on women. Those things are true when it comes to HIV.

I turn to what we have been good at. The action plan for HIV talks about the successes on vertical transmission; a tiny number of children are now born with HIV in this country. A big part of that is down to opt-out testing of pregnant women; the take-up has been absolutely enormous. The figures show the result: of the 60 people diagnosed in 2019 who acquired HIV through vertical transmission, only five were born in the UK. That is a huge step forward, and we have done brilliantly on vertical transmission, but it is crucial that we never let up on that, and that we get the message out that effective drugs taken during pregnancy can prevent HIV transmission to a baby. The mother has to be mindful of risks to do with the method of birth, be that natural delivery or via caesarean, and there is a risk factor involved in breastfeeding. All those pieces of information can effectively and easily be communicated to expectant mothers, and they absolutely should and must be.

I am conscious that my knowledge is not as great as that of other Members in the Chamber, so I have deliberately kept my comments relatively brief. We need to keep up the pressure. The hon. Member for Brighton, Kemptown referred to approaching the finish line. When I do anything that involves running, there is definitely a slowdown, usually due to exhaustion, as I approach the finish line, but we cannot afford a slowdown here. We must accelerate to the finish. We can now see a UK without HIV. He made important points about the developing world and the efforts that still need to be made there, but the end is in sight, and it is absolutely crucial that we reach it and see a world that is free of HIV.