INTRODUCTION

  1.  Kidney Cancer UK was founded in January 2000 by Keith Taylor and Dick Williams, two kidney cancer patients. It is the first support organisation for kidney cancer patients and carers to be established in the UK. It aims to provide improved access to reliable information about the disease and its treatment, to establish a network of individuals and groups capable of offering mutual support, and to raise public awareness of the needs of kidney cancer patients and carers. It organises quarterly national meetings and occasional educational lectures, publishes a bi-monthly Newsletter, provides an informative web site, and uses Internet technology to provide an online discussion forum for discussion among all KCUK members wherever they live. Although the main purpose of KCUK is to assist patients and carers in the UK, it receives an increasing number of requests for information from abroad and does what it can to respond positively to such enquiries.

KIDNEY CANCER RESEARCH NEEDS

  2.  Kidney cancer is one of the rarer forms of cancer (about 5,000 new cases are diagnosed each year in the UK) and therefore it has tended to attract insufficient attention in discussions of cancer research priorities. There are also only a small number of kidney cancer specialists in this country. As a result, many patients do not have the opportunity to consult with an expert. In some cases they are never told about, let alone offered, access to promising clinical trials and innovative treatments.

  3.  There are two major aspects of kidney cancer which have direct implications for decisions about a research strategy. The first problem is late diagnosis. The vast majority of patients are diagnosed when their primary tumour is already quite large and the disease has spread to other parts of the body. Therefore, there is an urgent need to apply scientific knowledge more effectively to the early diagnosis of kidney cancer. If kidney cancer is detected before it metastasises, there is a real chance that the patient can be cured.

  4.  The second problem is that kidney cancer does not respond well to conventional cancer treatments, and therefore more research is needed into innovative approaches, especially immunotherapy. After a patient has had his or her kidney and primary tumour removed by surgery, it is often necessary to deal with metastases that have appeared in other parts of the body. In general, chemotherapy and radiotherapy have little impact on metastatic kidney cancer. This means that if doctors do not have the knowledge or resources to apply biological therapies, then the prognosis for any kidney cancer patient with metastases is poor. Relatively few such patients survive more than five years and many die within the first year or two.

IMMUNOTHERAPY AND THE ROLE OF CANCER VACCINES

  5.  In previous evidence to the Committee, Professor Peter Selby expressed the hope that in the next ten years there will be more research into biological cancer therapies, including the use of vaccines. This is a vitally important issue for kidney cancer patients. The development of scientific knowledge in these areas and its translation into clinical practice will undoubtedly be of benefit not only to kidney cancer patients but also to other cancer patients for whom conventional treatments prove ineffective or inappropriate. The concept of stimulating the patient's own immune system to recognise and eliminate cancer cells—or at least to inhibit the further progression of the disease—has a long history, and if we could follow through this approach to fruition it would reduce our dependency on the use of chemotherapy and radiotherapy, with all their unpleasant and potentially harmful side effects.

  6.  For patients with metastatic kidney cancer, immunotherapy offers the only hope of long-term survival. However, access to immunotherapy, including vaccine treatment, is still very limited in this country. Interferon-alpha has become the most widely used form of immunotherapy for metastatic kidney cancer, but patient response rates remain disappointingly low. Kidney Cancer UK believes that there is a strong case for making Interleukin-2 (IL-2) more widely available than it is at present in the UK in order to assist patients who do not respond to Interferon-alpha. It seems odd, to say the least, that IL-2 has been approved by the Food and Drug Administration in the United States as the recommended treatment for metastatic kidney cancer, but in Britain there has been no such endorsement. In many European countries, too, IL-2 is generally available to kidney cancer patients with metastases. Interestingly, the most experienced kidney cancer specialists (and researchers) in the UK do offer patients IL-2 in appropriate circumstances, but there remain many health authorities in the UK which do not make the drug available, even in cases where Interferon-alpha has failed to help a patient.

  7.  There have been promising results internationally from experimental trials with kidney cancer vaccines of various kinds. In some cases, vaccines are made using material from the patient's own primary tumour and/or metastases. Kidney Cancer UK believes that this area of research needs to be strengthened, and that in general research into cancer immunology needs to be integrated more fully into the UK's cancer research effort.

ANTI-ANGIOGENESIS

  8.  Another promising approach to the management of kidney cancer is the use of various anti-angiogenesis agents, for example thalidomide, which seek to inhibit the growth of tumours by suppressing the development of their vascular blood supply. While recognising that this research is in its early stages, Kidney Cancer UK believes that since metastatic kidney cancer is usually deemed "incurable", there is every reason to support further research into anti-angiogenesis. This is a good example of an area of cancer research which seems to have developed much more slowly in the UK than in the United States and some other European countries.

ACCESS TO CLINICAL TRIALS

  9.  The UKCCCR renal cancer group has expressed concern that many patients who would qualify for clinical trials are not given the necessary information and support to join those trials. In some cases, it seems that the doctors themselves do not have this information. This is why, increasingly, patients are doing their own research and presenting their doctors with information that they have obtained from libraries and the Internet. There is an urgent need for more clinical trials for kidney cancer, since the pace of improvement of treatment for patients is extremely slow at present. Furthermore, information about clinical trials needs to be more widely disseminated among patients and medical professionals.

CENTRES OF EXCELLENCE

  10.  Because kidney cancer is one of the rarer forms of cancer, the average UK hospital does not see many kidney cancer patients each year, and most oncologists dealing with kidney cancer combine this specialisation with the treatment of other forms of cancer. They simply do not have the time, resources or support staff to devote themselves to kidney cancer research, and they do not see enough patients to develop their practical understanding of the disease. Thus, for many kidney cancer patients, going to their local hospital will not lead them to the best information or the best treatment. What we need is a small number of centres of excellence for the treatment of kidney cancer, and a system that ensures that all patients can gain access to these centres.

INTERNATIONAL COLLABORATION

  11.  Because kidney cancer is one of the rarer forms of cancer, it is especially important for researchers to collaborate internationally. In this way, a much greater range of experience and specialist knowledge can be pooled than is possible within a single country. There are, for example, many more kidney cancer patients and more medical specialists dealing with kidney cancer in the United States than in Britain, and therefore the results of kidney cancer research in the US need to be studied carefully by scientists and medical professionals in the UK. Similarly, opportunities for European-wide research should be developed to supplement national research efforts. Using the latest computerised information technology, it is much easier than ever before to gain access to details of research activities in other countries, to foster international collaboration, and to share information. Everything possible should be done to encourage this process as part of a cancer research strategy.

THE INVOLVEMENT OF KIDNEY CANCER PATIENTS AND CARERS

  12.  Until Kidney Cancer UK was established in January 2000, there was no kidney cancer patients' organisation in this country. As a result, there seem to have been no opportunities for kidney cancer patients and carers to be involved in the decision-making processes of cancer research organisations. Kidney Cancer UK fully endorses the view expressed by Cancerlink in its Memorandum of evidence that "Cancer patients and carers should be involved in decisions about research at every level—from deciding on research priorities to application and dissemination". Hitherto, kidney cancer patients' own assessment of their needs have not been taken into account within the cancer research process. Kidney Cancer UK believes that this situation should not be allowed to continue and that, for example, a national kidney cancer conference involving scientific researchers, medical professionals, patients and carers should be held every year—as it is in the United States—to establish an institutional basis for constructive debate and the exchange of views and information. Kidney Cancer UK is willing to help in any way to organise such a conference.

SUPPLEMENTARY MATERIAL

  13.  A range of supplementary material accompanies this Memorandum. This provides further information relating to the various concerns expressed above, and in particular to promising areas of kidney cancer research that, in the opinion of Kidney Cancer UK, must be strengthened if the treatment of this disease is to be improved. If this is not done, then it seems likely that for most kidney cancer patients their prognosis will remain poor.

21 June 2000