Diffuse Intrinsic Pontine Glioma

Jim Shannon Excerpts

Tuesday 14th November 2017 Commons Chamber

[Ian Murray (Edinburgh South) (Lab)]

I thank Mr Speaker for granting me this important Adjournment debate on diffuse intrinsic pontine glioma, a rare form of childhood brain tumour.

I applied for this debate to raise awareness of DIPG, to highlight the need for more research and development, to try to get better treatments and to bring to this Parliament the heroic story of seven-year-old Luke Stewart, his mum, Jennifer Ure Stewart, his dad, Mark and his grandfather, Robert Ure. DIPG is an aggressive form of tumour on the brain stem. Fewer than 40 children a year in the UK develop them, but they account for 10% to 15% of all brain tumours in children. In October 2017, it has been reported officially that 38 children died of DIPG, and there is no cure.

Although rare, DIPG is actually the second most common type of primary, high-grade brain tumour in children. It originates in the area of the brain stem called the pons, the area of the brain that is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure. Not all cases of DIPG are identical, and it can affect each child differently, including through pressure on the cranial nerve, long tract or cerebellum. Childhood brain tumours are classified according to the type of cells—whether they are diffuse or focal—and the grade of aggressiveness. These particular tumours are high-grade, aggressive and relentless, growing extremely quickly, often spreading throughout the brain stem and into the spinal cord. Sadly, this means that they are very dangerous, difficult to treat and have a poor prognosis. Although it is not yet known what causes DIPG tumours, there is currently ongoing research aimed at discovering their genetic causes, which could help early detection and the development of future treatments.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this important issue to the House at such a late hour. DIPG is one of those diseases for which there is no treatment, no cure and no survival rate, but if we are to find a way forward, we need research and development. I hope that the Minister will respond positively to the hon. Gentleman’s request. Does he feel now is the time for that research and development to take place?

[Ian Murray]

I thank the hon. Gentleman for his intervention. I shall come on to the subject of research and development. I have been in the House for seven years, and I live in hope of receiving a positive response from the Treasury Bench. Perhaps tonight we will get that far; indeed, I am sure that we will.

I welcome the research that is being done, but the current lack of sufficient research, available information, awareness of the condition and effective treatments can make DIPG all the more distressing for those diagnosed with it, as well as their extended families.

When it comes to treating the tumours, patients are usually offered courses of radiotherapy over three to six weeks. Because of the dangers of operating on such a critical area of the brain, surgery for some is simply not an option. In the UK, various studies show that chemotherapy is ineffective in treating childhood DIPG, although it is used in innovative ways in other countries, such as Mexico. I shall say more about that shortly.

Because the treatment options are extremely limited, the prognosis for children diagnosed with DIPG is poor. Although each child’s condition is unique, 70% of children with DIPG are not likely to survive for more than a year after diagnosis, and 90% do not survive for two years. The lack of knowledge of the condition means that children and their families are living from day to day. Greater investment in research on the condition might bring us one step closer to finding out more about the specific genes and molecules involved in DIPG tumour formation. That vital research could go on to create innovative new treatments, meaning that 40 more children each year—those who are struck down by the disease—could go on to become the doctors, scientists and even politicians of the future. It is important that we give those children the opportunities that they deserve, and give their families the hope that they need.

The famous astronaut Neil Armstrong’s daughter Karen died of DIPG 40 years ago at the age of just two, yet to date there have been very few advances in the treatment offered, which is devastating for parents. One such story is that of Luke Stewart. Luke is a seven-year-old boy who is happy, healthy, active, kind and caring. He comes from a loving family—mum, dad and two little brothers: Lewis, who is five, and Lochlin, who is just one. In January this year, their world was blown apart when Luke was diagnosed with DIPG. Doctors advised Luke’s mum and dad that he could survive for six to nine months if he received radiation treatment, the only option offered by the NHS in the UK. I cannot imagine what that kind of news does to a parent.

The family were informed that radiation treatment would prolong Luke’s life by only a few months, and that, although it would make him more comfortable, he would not survive. They were advised by the NHS that there were no other treatments available worldwide, or any clinical trials, that could help their son, and that on completion of the radiation treatment he would receive only palliative care. They were broken by that news, but they knew that they had to keep fighting for Luke, so they began to search for hope elsewhere. That was the start of their incredible journey to Mexico to save their son’s life. The journey to Monterrey began when, during a visit to the Chelsea football club training ground, they met a family from London whose daughter had the same condition. They had known of each other from Facebook conversations, but were totally unaware that both families would be at the venue at the same time. The London family were leaving for Mexico within days so that their daughter could receive a new, ground-breaking treatment.

That gave the Stewart family renewed hope. They researched the entire programme, which is called intra-arterial chemotherapy. Catheters are placed in the basilar and femolar arteries, and systematically deliver drugs approved by the Food and Drug Administration into the brain stem. The treatment has also been combined with intrinsic and T-cell immunotherapy. The Stewart family left for Mexico at the beginning of May, when they witnessed Luke’s condition deteriorating rapidly. This was the only hope that they had to offer him at that time: it was their last hope. Not only were they in emotional turmoil, having to deal with such a devastating situation, but they had to fundraise continually to secure money for the treatment.