Mesothelioma: Research Funding

Lord Bishop of Newcastle Excerpts

Thursday 16th January 2014 Grand Committee

[The Lord Bishop of Newcastle]

My Lords, I, too, am very grateful to the noble Lord, Lord Alton, for initiating this short debate. I speak to support him and to encourage the Government to enable the establishment of a mesothelioma research funding scheme as urgently as possible. Research into this form of cancer is very much the Cinderella of cancer research in the UK, and there is an urgent need for us to do more and to do better.

I knew very little about mesothelioma until I became aware of its effects, not least through the early death in 2009 of the former Bishop of Peterborough, who some Members may recall. The knowledge that the cause of this cancer has been working away unknown and undetected in one’s body for 20 years or more suggests to me that much more research into detection and treatment is absolutely vital.

It is reckoned that this year over 2,000 people will die of the disease in the United Kingdom. We have the highest rate of the disease in the world, and a similar rate to those dying of myeloma and melanoma. However, the problem is that the funding for mesothelioma research lags far, far behind; it is only about one-tenth, from the figures that I have seen. If it is true that every single week an average of 20 tradespeople in the UK die from diseases such as this which are linked to exposure to asbestos during their working lives, then that is a tragedy.

I know that the Minister is sympathetic to the needs of all those who suffer from this terrible disease, and that he is sympathetic to the need for more research. If I may, I urge him to be really proactive in his work with his colleagues, academics, the NHS and the insurance industry to establish a sustainable research funding scheme. It is self-evident to me that more and sustainable funding will attract greater quality research to an area that has been neglected and underresourced for so long.

Health and Social Care Bill

Lord Bishop of Newcastle Excerpts

Wednesday 7th December 2011 Lords Chamber

[Baroness Gould of Potternewton]

My Lords, I am very pleased to support the amendment. I was also very pleased to see that, in the response to the HIV Select Committee report, the Government are reviewing their current policy, which excludes some people from HIV treatment. The HIV Select Committee was absolutely right to say that it is wrong to charge anyone with HIV treatment and care.

For me, it is not only a question of health, it is a question of humanity. I find it incredible that this position survives. I have to say this with great regret, because I spent a long time trying to persuade my Government that something should be done about this, with little success. The argument was made very much in the way that my noble friend said about health tourism. I hope, although I am not clear from the words of the Minister in replying to the debate in December, whether that is still in their thinking. She said,

“we must avoid creating any incentive for people to come to the UK for the purpose of free HIV treatment”.—[Official Report, 1/12/11; col. 492.]

As my noble friend Lord Fowler said, there is no evidence to support the claims of HIV health tourism if the charging is ended. In 2008, the National Aids Trust produced a report on the myth of HIV tourism, demonstrating that such claims are wholly unfounded. Data from the Health Protection Agency show that the average time between a migrant arriving in the UK and an HIV diagnosis is almost five years. That is an awfully long time for someone coming on the basis of health tourism. For me, it is the absolute clincher as to why this is all such nonsense. Further, government reports have suggested that asylum seekers have no prior detailed knowledge of the UK's asylum policies, welfare benefits or entitlement to treatment. That would apply equally to HIV.

HIV charges, as the noble Lord, Lord Fowler, said, are not applied in Scotland, Wales or Northern Ireland. We would have seen some movement from London or anywhere in England to those nations if people wanted to access free treatment. If individuals do not move from London to Edinburgh to access free treatment, it is difficult to believe that they move from, say, Harare to London, for that reason. Another reason makes that claim somewhat ludicrous. A report published yesterday by the HPA shows that 5.9 per cent of TB patients are HIV-infected. TB treatment is free for those people; but the HIV treatment is charged. I do not know how one differentiates between those treatment costs, and, again, it just shows how stupid the position is.

In addition, since 2004, when the charges for HIV treatment were first implemented in England, there has been a 13-fold increase in access to anti-retroviral treatment in low and middle-income countries around the world, with sub-Saharan Africa seeing the greatest increase in the absolute numbers of people receiving treatment. ART coverage of all those who need it now stands at nearly 50 per cent in those regions and continues to increase. It is most unlikely that those able to purchase a flight to the UK will be unable to purchase ART in their own country. Having HIV does not in itself prevent removal from this country if a person is in breach of the Immigration Rules, as was established at the European Court of Human Rights in the case of N. Therefore, there is no reason for someone who knows they have HIV to migrate to the UK believing that their HIV-positive status will secure settled residence and ongoing access to treatment.

However, there is another criterion which, again, I had not appreciated until yesterday. A situation arises from the new Immigration Rules that have just come into force which further entrenches the way that HIV treatment charges deter African men and women in particular from finding out about their HIV status or going for treatment. Now, anyone with an unpaid NHS debt of over £1,000 will routinely have further immigration-related applications, whether to remain or for re-entry, refused. In the past, it was possible to encourage people coming forward for testing and treatment on the basis that it would have no impact on their immigration status. That is no longer possible as, if you are not entitled to free HIV treatment, your immigration status can be affected. As the noble Lord, Lord Fowler, said, these people are destitute and do not have the money. As a consequence of this change, they could now be removed from this country, which is something that never happened before.

There is also the whole question of costs. It seems to me that not removing charging continues to increase the cost to the NHS arising from HIV treatment charges. Ending charges for HIV treatment will actually save the NHS money by preventing new HIV infections and by identifying HIV early, when it can be effectively treated, so reducing the need for hospitalisation and other costly care when people with HIV become seriously ill. Reducing the level of undiagnosed HIV and increasing the proportion of people with HIV on effective ART will reduce the number of HIV transmissions occurring in the UK. I think that the noble Lord, Lord Fowler, said that preventing one onward transmission of HIV saves between £280,000 and £360,000 in treatment costs over a lifetime. People who are diagnosed late or who do not access treatment become seriously ill and will often require expensive in-patient care—a week’s stay costing between £15,000 and £25,000, and there may be many repeat visits to hospital. Surely it is cheaper to provide no deterrents to early testing and treatment.

It is sound common sense to remove this costly and inhumane restriction from the NHS (Charges to Overseas Visitors) Regulations. I hope that perhaps, not today but when the review is over, we will hear sound common sense from the Government.

[The Lord Bishop of Newcastle]

My Lords, I strongly support the amendment, and I shall be very brief. I believe that it is high time to put an end to the singling out of HIV as the only infectious disease which is subject to treatment charges. I believe that exempting HIV from charges is necessary to save lives, to protect public health and to safeguard NHS resources. Ensuring that everybody who needs treatment receives it is the key point. Charges deter people from accessing treatment and from testing for HIV. Why is it that HIV is the only serious communicable disease for which treatment is not provided free of charge? It is inconsistent and confusing, and undermines efforts to prevent further infection. Removing the charges will prevent many premature deaths in the United Kingdom, and will reduce long-term costs and transmission of HIV. This is why I hope the Minister will look very kindly on this amendment.

Genomic Medicine: S&T Committee Report

Lord Bishop of Newcastle Excerpts

Wednesday 9th June 2010 Lords Chamber

[The Lord Bishop of Newcastle]

My Lords, I, too, am pleased to have the chance to contribute to this debate and I want to thank the noble Lord, Lord Patel, and his colleagues for the excellent work set out in this report. I am pleased to be here not only because of the importance of the rapid advances in genomic medicine in recent years, but also because it enables me to pay tribute to some of the groundbreaking work that is being undertaken in my home city of Newcastle upon Tyne at the university, in the Centre for Life and in our NHS hospitals.

The links between genetic make-up and the diseases that afflict us are clearly established and I for one, as a non-specialist, am becoming much more aware of the possibilities that advances in molecular genetics seem to offer for the understanding, prevention and treatment of a wide range of complex diseases. I am aware of the advances that are being made so rapidly despite the very considerable complexities involved. I am also aware of Professor Sir John Burn and his work in identifying people with the gene that causes an inherited form of colorectal cancer, and of the clinical trials to test aspirin and a form of starch as inhibitors of the disease. That opens up the possibility of using simple food additives to prevent the development of that particular type of cancer.

Another area of research in Newcastle has been into a degenerative brain disease which it was previously assumed was a form of Parkinson’s or Huntingdon’s disease. Only by studying in great detail the individual genetic make-up of a large family was it possible to determine the cause of the disease and identify the genetic markers for it. Other research at the Centre for Life in Newcastle has involved the use of highly sophisticated genetic analyses of a large number of families to identify how genetic variability between individuals contributes to the risk of developing cardiovascular disease both in childhood and adulthood. None of those would have been possible without the DNA technologies that have been developed in the past 20 years, and I cannot help but wonder what the next 20 years will bring.

The advances in our understanding have been little short of extraordinary in the first years of this century, and rightly these advances have given rise to much excitement and enthusiasm. But they also give rise to a number of important issues which are addressed in this helpful report, so I will make a few points about some of the recommendations. First, I turn to the recommendation that the Office for the Strategic Coordination of Health Research should be tasked to,

“take the lead in developing a strategic vision for genomic medicine in the UK with a view to ensuring the effective translation of basic and clinical genomic research into clinical practice”.

That is a really good recommendation, but in the current climate of the culling of quangos, it is necessary to ensure that this body or any other is adequately funded for that purpose. Money spent on getting the strategic vision right is likely to save many times that amount in both waste and application in the absence of such a strategy.

The report also recognises the variety of stakeholders and institutions that are already active in the field of genomic research. It is essential for the public good that we,

“should identify the barriers to collaborative working between academia and the pharmaceutical and biotechnology industries”—

and the NHS—

“and ways of removing them”.

The first part of that task will be much more easily achieved than the second, but barriers to collaboration will have to be overcome. The recommendations that identify the changes required to incorporate genomic medicine into mainstream NHS are good, but they, too, inevitably will require an increase in personnel and resources if we are to obtain the best possible outcomes.

For genomic medicine to achieve optimum effect, it is important that a large database is established which is reflective of the population of the United Kingdom. Individuals agreeing to their genetic information being stored and used for research purposes must, of course, give their informed consent. Since, however, the potential uses to which their genetic information may be put are impossible to identify, unless the consent agreement is restricted to immediate and specific research, that raises a number of key questions. How informed is an individual’s consent if he or she does not know how the information is to be used? Is it right to ask for broad or blanket consent unless the individual is aware of the range of possible research projects? For example, information may be used to help research into cancer treatment, but it may also be used to aid antenatal diagnosis of disease that may provide the basis for an abortion. While some people may not have a problem with this, others most certainly will. And yet, at the same time, to restrict consent to certain types of research programmes may be overly prescriptive and impractical to police. We need a fuller debate in this area.

The report goes on to suggest that it is not necessary to introduce legislation to ban genetic discrimination. I remain to be convinced about this because if discrimination is rightly banned on the grounds of race, gender, disability or sexual orientation, then why not here? It would be possible for an employer to seek genetic information on current or future employees and then to make employment decisions based on that information. Can that be right? For people who have, for example, the gene for familial colorectal cancer or a gene which contributes to the likelihood of developing cardiovascular disease, this could lead to employers not wanting to employ—or certainly not wanting to invest in the training of—people who have those genes. Each of the genes would give a different risk of developing the disease and, in one case, there is a lifestyle contributory factor too. Would an employer be able to distinguish between some of the subtleties and the nuances? Surely it is too complex an area not to regulate through legislation.

Similarly, the recommendation that companies supplying direct-to-consumer tests should self-regulate rather than be subject to statutory regulation is highly questionable. Self-regulation has already been found wanting in other areas of public life; what leads us to think that commercial companies would be any good at it here? The potential for misinformation is too great to be left to companies, whose main aim, after all, is to make a profit.

When the first draft of the human genome was published in 2000, President Clinton described it as,

“the most wondrous map ever produced by mankind”,

and Prime Minister Tony Blair hailed it as a,

“revolution in medical science whose implications far surpass even the discovery of antibiotics”.

While of course, as we have heard, some genetic sequencing still remains to be completed, the past 10 years suggest that Clinton and Blair were not overengaging in hype. That is why I welcome the report. Although I am not sure about all the recommendations within it, it is an important step as we embark on the next stage of the exciting developments in genomic medicine.