LEUKAEMIA & MYELOMA RESEARCH UK LTD

Leukaemia & Myeloma Research UK was founded in 2015. Our mission is to prevent people dying from blood cancer through prevention, research and more effective treatment.  Blood cancer is the 3rd biggest cancer killer, claiming more lives than breast or prostate cancer each year. It is the most common type of cancer in children and young people – in fact everyday in the UK 27 people are diagnosed with Leukaemia and sadly 12 people die.

Our goal is to become the leading UK blood-cancer charity specialising in stem-cell therapy by: - 

1)    Actively supporting stem-cell research into blood cancers.

2)    Raising awareness of stem-cell therapies.

3)    Offer support and advice to blood cancer patients.

4)    We want to protect those who are vulnerable to cancer through genetic predisposition by offering a free or heavily subsidised stem-cell storage service for qualifying families, which we call the Model Cell Biobank (MCB).

Our Structure – Leukaemia & Myeloma Research UK’s funding comes from a combination of donations, legacies and charitable activities. We actively promote and advertise funding events, such as a clothes recycling initiative; we provide fundraising materials; network with other like-minded organisations; and raise awareness around cancer treatments. We are now appealing to Trusts and Foundations to support the funding for our innovative stem-cell project.

Project – ‘Saving Lives Through Stem-Cell Extraction’ 

We are seeking funding to pay for cord blood stem-cell storage for qualifying families who have a history of cancer, are in receipt of welfare or on a low income and would therefore be unable to afford the cost of private bio-banking. The goal is to offer vulnerable families the opportunity to store their baby’s cord blood for twenty-five years, which will be available should the child or another member of the family require them. These cells are taken from the umbilical cord at the time of birth.

Why the project is needed 

Leukaemia & Myeloma Research UK has developed the first free stem-cell storage (or MCB) service to promote ‘biological insurance’ - where a child’s cord-blood stem cells are stored at the time of birth, these can then be used by the child, or another family member, to treat disease. Stem cells are currently being used to treat over 80 diseases including leukaemia and bone-marrow cancers. Clinical trials are also ongoing to treat childhood diseases such as cerebral palsy, diabetes, and Parkinson’s disease. The MCB offers the life-saving option of a transplant for the child, or an immediate relative, and avoids the invasive, painful and expensive procedures of other stem-cell collection, such as bone marrow. 

Our work differs from the service offered by public banks, such as Anthony Nolan and the NHS Cord Blood Bank, in that the cord-blood stem cells are stored on behalf of the family and the service will be widely available throughout the UK. Currently, the public banks can only collect cord blood when the baby is born in one of seven hospitals (situated in Leicester, Manchester or in and around London), which is extremely limiting. Where private storage is offered in the UK, expectant parents must meet the full cost for the collection, processing and storage – which is often inhibiting. Consequently, there is a huge shortage of stem cells being collected from BME communities - leaving them vulnerable and without a choice of treatment should they fall ill with blood cancer or another disease. Those from a minority ethnic background have only a 37% chance of finding a bone marrow match from an unrelated donor, whereas someone from a white Caucasian background has a 72% chance.

Our service will be offered free of charge to any family claiming welfare and will be heavily subsidised for low-income families. This expenditure includes the cost of the stem cell kits, the travelling to maternity wards by the phlebotomists, the cost of transporting the cord cells to the bio-bank, and the cost of storage.

Who it will help 

The cord-blood banking service is free to qualifying expectant mothers who live in the UK. We are working hard to reach out to BME communities to let them know about this service and to share information relating to stem cell treatments. To qualify, they must economically disadvantaged and in receipt of Housing Benefit, Council Tax or Universal Credit, or on a low income and must meet the following criteria:

• The stem cells will be used to treat the child, or another member of the family, for a medically attested treatment. 
• There is a history of cancer in the immediate family.

In the long term this sort of preventative approach will not only save lives, but also save the NHS expenditure on medicinal treatments.

Children with many types of cancer have seen huge improvement in survival rates over the last 40 years. Acute Lymphocytic Leukaemia, the most common children's cancer known, has a 5-year survival rate of around 92%, up from 50% in the 1970s. Despite improvements in treatment, some rarer types of children's cancer have seen little or no improvement in survival rates, with a number still classed as untreatable.

One of the biggest issues faced by survivors of childhood cancer remains late effects of treatment, due to the harmful nature of many traditional treatment routes for children. Late effects of treatment leave many former patients with long-lasting physical vulnerabilities, like the risk of heart disease, development of secondary cancers, lack of fertility, and gradual loss of mobility. Certainly, childhood cancers can bring opportunities for psychological growth, but some long-term survivors also live with learning disabilities and other neuropsychological long-term side effects such as post-traumatic stress disorder. These In turn impact on relationships, employment opportunities, and overall wellbeing.

At long last there is now a more profound acknowledgement and understanding of the harmful late side-effects that the survivors of childhood cancer face as they move on with their lives. These late effects are a direct result of the damage caused by conventional radiotherapy and chemotherapy that ultimately takes their toll on the rapidly developing child. There have been great advancements in the treatment of adult cancer, but this has not always been the case for children and young adults.

The benefits of cord blood stem cells

Cord blood stem cells are undifferentiated, allowing them to be used in all parts of the body, giving them the potential to cure hundreds of diseases. They also reduce the need for animal testing. Although not our primary objective, we are aware of the huge potential of having a bank of stem cells which can be used to treat blood cancers, as well so many other diseases and illnesses. The longevity of these cells has proved they are as good 30 years later as on the day they were first extracted and stored. This alone offers huge potential for treatments and cures well into the future, saving the NHS money and resources.

Procedure - The cord-blood stem cells are stored on behalf of the participant for 25 years. The mother is the legal guardian of the cells until the child reaches the age of majority, at which point, ownership transfers to the child. After 25 years, the cells can be privately stored, donated for research, offered to a public bank, or destroyed. Consent from the child will be sought at this point and we would strongly encourage the donation of any remaining cells to public banks or for research purposes. 

What it will cost 

Each extraction costs £1,925.90. Over the next financial year, we are aiming to reach achieve 27 extractions at a total cost of £51,999.