Melanoma

Pauline Latham Excerpts

Wednesday 18th January 2012 Westminster Hall

[Pauline Latham (Mid Derbyshire) (Con)]

It is a pleasure to serve under your chairmanship, Mr Hood, and I am grateful to Mr Speaker for selecting this important topic for debate. According to the British Journal of Cancer, the incidence of the most serious form of skin cancer, melanoma, is expected to rise by 52% in both men and women by 2030. One of the many tragic aspects of advanced melanoma is that, compared with other cancers, it disproportionally affects younger people. Indeed, more than a third of all cases of melanoma affect people who are under the age of 55. With such a high incidence, combined with the aggressive nature of melanoma, treatment options are very important.

I want to draw attention to the new and innovative drug, ipilimumab, also known under the trade name of Yervoy. Ipilimumab works in a new and unique way through a form of immunotherapy. It encourages the immune system to produce more cancer-killing cells. The drug is significant, and it has not been available to patients before.

In July last year, ipilimumab was launched in the UK with a licence approved by the European Medicines Agency. This is the first major advance for treatment of this cancer in 30 years. However, to the disappointment of patients and stakeholders, the National Institute for Health and Clinical Excellence announced on 14 October that it would not be recommending ipilimumab for the treatment of advanced melanoma on the NHS. I was profoundly disappointed to discover that the chief executive of NICE, Andrew Dillon, had deemed that this treatment was not

“a cost effective use of NHS resources.”

In response to that news, I held a stakeholder investigation in the Houses of Parliament and invited patients, carers, clinicians, charities—they included the patient support group, Factor 50, and the Karen Clifford Skin Cancer charity, also known as Skcin—and parliamentarians to come together and discuss their personal concerns about the negative preliminary guidance that was given by NICE.

[Rehman Chishti (Gillingham and Rainham) (Con)]

My hon. Friend mentioned that this disease affects younger people to a greater extent. One of my constituents, who is young and has young children, needs the drug Yervoy, which is expensive. Does she agree that we need to do everything that we can to ensure that those young children can see their mother for a longer period and that her last days are not lost days?

[Pauline Latham]

I completely agree with my hon. Friend, and I will come on to some cases in a moment. It is a very important point.

As well as coming together to share our concerns, the meeting was held to create a report that was submitted to NICE in response to the appraisal consultation document, in anticipation that it would be considered ahead of the NICE technology appraisal meeting, which took place on 16 November. We have had no response so far.

When holding the meeting on advanced melanoma, I was given the opportunity to hear first hand from melanoma patients, who are desperate to receive the drug. Melanoma often strikes at the younger end of the population. More than a third of all cases of melanoma occur in people below the age of 55, and it is the second most common form of cancer in the UK for those aged between 15 and 34. What those statistics on advanced melanoma in the younger population do not show is that many people in that age group will have children and so will face a very aggressive cancer, alongside the knowledge that they face leaving behind their children and family.

The patients whom I met at the meeting all echoed a simple and profound point: they are desperate to stay alive, so that they can be with their children, husbands, wives, partners and families. Given that treatment options for the disease have not advanced for three decades, how can it be fair not to release the drug for use by those patients who could have more time with their families? One young patient—a lady aged only 30—said at the meeting:

“I need to live. I have to live for my children. I just want a few more years so that my boys will remember me.”

Richard Clifford, the founder and trustee of the Karen Clifford Skin Cancer charity—Skcin—said at the meeting that

“median overall survival time after diagnosis is six to nine months. This is tragic because people have little time to prepare themselves and their loved ones for what is inevitably going to occur.”

I could not agree more with his sentiments. There is clearly an unmet need in the treatments available, and I believe that ipilimumab has a place in today’s treatment options, which are already scarce for cases of malignant melanoma. An experienced oncologist from Leeds who has used ipilimumab echoed that view at the meeting:

“It is the first drug that can help people live longer or make them more likely to be active for a meaningful period of time.”

I add a personal plea for help: my brother died from a malignant melanoma 11 years ago this month at the age of 54, one week after his birthday, leaving his wife and two teenage children. I know how debilitating this form of cancer is and how quickly it can spread. Apart from radical surgery, he had very few options in terms of the drugs on offer. As a result of Michael’s illness and death, I see my GP regularly, and I have had several pre-cancerous areas removed before they had the chance to progress to malignancy.

[Jeremy Lefroy (Stafford) (Con)]

I congratulate my hon. Friend on raising this important issue. As someone with very fair skin, I have had to have skin removed and examined, so I understand the potential consequences and the worry that people go through. Does she agree that we need more education about the consequences for fair-skinned people and, indeed, everyone of too much exposure to the sun and the overuse of sunbeds?

[Pauline Latham]

Yes, and I thank my hon. Friend for bringing that up. Sunbeds are still a problem, particularly among young women who think that having a tan makes them look healthier.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter before the House. Skin cancer is the deadliest cancer in Northern Ireland, and that is very worrying. The hon. Member for Stafford (Jeremy Lefroy) mentioned sunbeds. People under the age of 35 who use sunbeds increase their possibility of getting skin cancer. What does the hon. Lady think can be done? Does she think that councils need to do more? Councils have control of sunbeds, so perhaps they need to say, “No more.”

[Pauline Latham]

Yes, I would like that to happen. Looking tanned does not mean that someone is healthy. In fact, tanning increases the risk of malignant melanomas, which are rapid killers, and I would like councils to have the strength to say, “No.”

It may be expensive to prescribe the drug, but it is the first advance in treatment for a long time, and if used, may offer the opportunity of more trials to refine it, which could lead to its becoming even more effective. For young people with melanomas, it is a lifeline, even if they only survive for a relatively short time. Let us not forget the possibility that agencies, such as social services, and welfare benefits can cost the country huge sums if the remaining parent has to give up their career to look after a young family. Patients with this aggressive disease are expected to have a median overall survival time of six to nine months, but in trials, 46% of patients taking ipilimumab were still alive after a year, and in some cases, patients can live even longer.

At the stakeholder’s meeting on 8 November, we heard from a patient called Ian. He seemed well, spoke eloquently and raised many important points on access to treatment, which I urge hon. Members to read in the report that we submitted to NICE—I am happy to provide a copy. Sadly, before 21 December 2011, Ian became very unwell and was ultimately bedridden. The short time between Ian attending the meeting in November and his death a week ago demonstrates the aggressive nature of advanced melanomas.

Lack of access to the drug is still a major concern to all melanoma patients and, of course, to their families and friends. It is very distressing for them to know that there is a drug on the market that has been proven to prolong the lives of sufferers, if even for only a few months or years, yet they cannot access it through the normal channels. I acknowledge that ipilimumab is available in some parts of England through the cancer drugs fund, but it is not available in all areas, and the fund does not even exist in Wales—yet another example of inequality from the cancer drugs fund and another illustration of a postcode lottery.

[Chris Skidmore (Kingswood) (Con)]

On my hon. Friend’s point about a postcode lottery and regional variation, I think that she will be interested in figures that I recently obtained through a parliamentary question. They break down the number of registrations of newly diagnosed cases of melanoma—skin cancer—by local authority and region. I would happily give her a copy. In my region of Avon, Somerset and Wiltshire, there has been an explosion of newly diagnosed cases of skin cancer, from 254 in 1999 to 455 in 2008—an increase of 79%. The huge variation across the country shows that this is not just about the future, but that we have a problem now that we must urgently tackle.

[Pauline Latham]

Yes, I agree. I thank my hon. Friend for raising that point, because although we are talking about a big increase by 2030, he is right that melanomas are affecting more and more people, particularly the young, and they are usually a death sentence.

What will happen to those patients in areas covered by the cancer drugs fund who can access ipilimumab through the fund when funding ends in 2014? That further illustrates why it is imperative that NICE recommends ipilimumab, so that it is available across England and Wales to all patients who could benefit from it. The Minister knows that my concerns about access to treatments for other cancers—for example, Avastin as second-line treatment for bowel cancer via the cancer drugs fund—are well versed through parliamentary questions and speeches in the Chamber. I remain equally determined to ensure the availability to cancer patients of other life-prolonging drugs, such as ipilimumab.

Alongside Factor 50 and Skcin, I urge in the strongest possible terms that the Department of Health, the manufacturers and NICE work together, so that ipilimumab is available to appropriate patients across England and Wales. There are huge concerns that, without a positive decision on ipilimumab, patients will lose out on a lifeline to have those extra months or even years with their loved ones.