Lord Fowler: HIV policy successes to date

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The Rt Hon the Lord Fowler, Lord Speaker, House of Lords, discusses how the United Kingdom has achieved its successes in HIV policy, and sets out priorities for future policy.

This presentation was recorded at our conference on The future of HIV services in England on 25 April 2017.

Transcript

Well thank you very much indeed. I’ve been slightly preoccupied for the past several months having taken on the job of Speaker in the House of Lords.  We of course are the Junior House, the elected Commons rightly takes precedence so here I am after almost fifty years of toil in Parliament, ending up as the sidekick to John Bercow and I can claim at any rate, one thing, I am the third Speaker in the history of the House of Lords, both my predecessors of the last ten years were women, Helen Hayman and Frances D’Souza so at least I can claim to have broken through the glass ceiling of female domination. 

There’s one advantage for coming back after a period away, and that is that you can look at a familiar subject with new eyes and so as far as HIV is concerned, what are my impressions?

I have basically four. The first is, and I’m surprised at how little attention HIV Aids gets in the mainstream media in this country.  It’s as if it is falling off the public policy agenda.  It’s as if we’re all too well accustomed to the messages.  At one point last year I was rather encouraged.  BBC said they were going to do a programme on HIV to coincide with World Aids Day.  It was to be shown on BBC 1, the breakthrough that we had been waiting for, and you may be saying to yourself “I wonder why I missed that?”.  Well don’t worry, so did everybody else.  The programme was cancelled and in its place was inserted a challenging programme, taking us behind the scenes of The Apprentice, and of course such apathy is not because of problems have all melted away. 

We have over 100,000 men and women living with HIV. We have thirteen and a half people who are undiagnosed, and therefore causing harm to themselves and capable of spreading the virus, and we have 30,000 women living with HIV.  I well remember, when I was Health Secretary, being told back in the 1980s that my public education campaign was far too general because it affected only gay men. Well I hope that the people who said that now look at the position.

By any standards, HIV remains a substantial public health problem and thank God in this country we are past the stage which I remember so well, when HIV was so often a death sentence. We now have the drugs which enable people to live full and normal lives, but of course that doesn’t mean that there are not health problems for them to overcome.  Problems like those set out in the excellent report that you are publishing today.

The challenges our health service face now and will face increasingly as the years go by, deserve much better public understanding. For drugs are not an easy panacea, life is preserved but problems continue.  It remains a matter of profound consequence.

My second observation is more in the nature of a question: Do we really attach the importance we should do to public health? I remember when we were introducing a clean needles for drug users, we had particular opposition in Scotland which was ironic because the problem was greatest as it happens in Scotland.  If we are to give out clean needles, we would be condoning crime said the Edinburgh Police and Edinburgh press in unison.  The Scottish Health Department, to their credit, set up an expert committee and their finding has relevance I think to this day.  They said “the prevention of the spread should take priority”, and that I think has a resonance today. 

In the end of course, we did introduce clean needle exchanges with dramatic results. The route of HIV caused by dirty needles was effectively closed and the policy was followed by a range of countries around the world, and incidentally there was absolutely no evidence of drugs crime increasing as a result.

Today we face different issues but leading to the same question: How much priority do we place on public health, given that the policy will be attacked by some?  PREP is a prime example.  There is no sensible argument against the introduction of PREP if your aim is to prevent the spread of HIV, it would be an undoubted aid to public health, you don’t need another trial to establish that that is the case, nor should we be deterred by arguments that this is simply enabling “promiscuous behaviour”.  As the Scottish Committee said on clean needles, the prevention of the spread should be the priority. 

As an outsider let me say, I never really expected to see a voluntary body being forced to go to court to argue that the health service had the power to provide such drugs. Even more, I never expected the argument to be put forward that treatment should be withheld because there were more desirable conditions for money to be spent upon. We were taken back to the days of good illness and bad illness and we all know that conditions like HIV are not automatically popular.  We all know that as with sexual diseases, there were issues of shame that prevent people coming forward for testing and treatment.  That is why we have this long tradition in this country of confidential treatment.  It is all the more reason why we should be cautious about the arguments we employ and the language that we use.

And my third impression is this: compared with many other countries in the world, our problems are obviously not as vast. They are not on the scale of many African countries like Uganda and even to this day South Africa.  A country like Russia which ignores all sensible evidence on the treatment of drug users and it is not on the scale of some of the problems in the United States, where far too many people do not adhere to their treatment. 

Just to eliminate any trace of complacency that there may be today, let us remember that we still have a worldwide position where well over 1 million people die each year from aids. Where 35 million people around the world live with HIV and where around 15 million people with HIV are undiagnosed and obviously that can spread the virus further.  But you may ask, and if you don’t other will, what has this got to do with us?  And the answer to that question depends on what you believe your duty is to others. 

We speak about the tragedy of the 1980s in countries like our own and the United States. We perhaps forget that the tragedy has not ended in many, many countries around the world where contracting HIV can still very much be a death sentence.  And attitude also depends upon what you want our role in the world as a country to be, and I would argue that our role is to pass on our experience and knowledge, in partnership.  We’re not forcing it down other countries throats, but then it happens, compared with many other nations our record is good.  Helped now by the pledge on international aid which appears to indicate that this is no longer an issue of party political controversy.

When I was Health Secretary, my ambition was to make this country a model in tackling the aids issue. Over the last thirty years, we’ve not done everything right, but we have done much which has been to the public good.  It would not take much to get us back on course.  I believe there is a position for a country like ours.  Our approach should be in explaining our experience to the world of what works and perhaps a bit of what doesn’t work as I leave you to fill in that bit. 

And that brings me to my fourth observation. As I went round the world a couple of years ago, looking at the HIV position in different countries, it was clear to me that the one barrier that so often stood in the way of proper public health and proper treatment was the stigma attached to HIV and the clear and explicit discrimination against gay people in so many countries.  In over 60 countries homosexuality is illegal and people can be and are prosecuted and imprisoned and worse.  In Russia and Chechnya there’s clear evidence of discrimination. 

In many countries you find blame and ostracism placed on women for their husband’s condition when it is quite clear that this is not the case. But again, you might say what possible relevance has this got to the United Kingdom.  Surely attitudes have dramatically changed here?  We are after all a nation which has progressed from prosecuting gay people like Alan Turing in the 1950s to today where equal marriage is the law of the land.  We are introducing a more effective sex and relationship education system in schools.  And all that is true, but as this report shows only too clearly, that does not mean that all the public go along with these changes when it comes to HIV.

As the report states, stigma continues to be a major issue thirty six years into the epidemic, affecting the psychological and emotional wellbeing of people living with HIV. In national surveys of people living with HIV, around half of all respondents found feelings of self-stigma.  Even worse, the evidence that experience of stigma in health care settings was common.  One in eight in this stigma survey of 2015 avoided seeking clinical care because of an expectation of being treated differently.  The focus groups used to guide this report said that many of the participants could, and I quote, really given examples, many of which were shocking and frequently occurred in health care settings.  They included examples of people being prepared to disclose their HIV status without being able to control how the information was communicated.

I give just one example which came out to me from the report and it was a respondent who said this: When they found out that I’m HIV that lady came to me, and this was in the health setting, the lady came to me and looked at me and said “oh are you HIV?” and I said “Yes”. She said “No I don’t believe it”.  I said “Why?” “Because of the way you look and because of the powder” and the makeup which I’d put on.  And she says, “Yes I look on you and you’re not HIV” I said “I’m HIV positive”.  So she went and told the other colleagues and they came, four of them and they looked at me. 

I mean that’s an extraordinary story for Britain in the 21st century. So, again it takes us back to the beginning of the last century, when a royal commission recognised explicitly the need for confidentiality when confronted with sexual disease.  It would be both unfair and unjust if stigma was to get in the way of the advances that have undoubtedly taken place, and frankly there is only one body able to confront this adequately and that would be the Department of Health of themselves, under whatever government is in power.  It is not a matter of party politics, but there is an undoubted responsibility there. 

So, there is no conceivable doubt ladies and gentleman, that we’ve made progress and dramatic progress at that. Treatment inside clinics has been transformed.  We now have the advantage of drugs which in the 1980s we could only dream of, the specialist consultants, the doctors, the nurses who have helped to prevent death which was all too often the outcome in the past, they are the real heroes of this transformation, but as the report shows, there is still a distance to go.  Yet, compared with so many other countries around the world the progress has been formidable. 

I hope I will not be considered party political if I end by quoting Winston Churchill. Winston Churchill reflecting back at the beginning of the 1950s on a narrow election defeat, “One more heave” he said.  I’m not sure that one more heave applies to policy here, but perhaps with three or four more pushes and shoves, then we could become even more the world leader that I believe we are capable of and in many ways are.  I think that is the challenge to us and a challenge which I very much hope this country will take up.

Thank you very much.

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