Peter’s Hospital Diary

I spent yesterday up in London – not a check up this time, but part of a ‘patient advocacy’ team from LeukaemiaCare visiting Portcullis House (the offices of Parliament) to meet with some MPs who have an interest in health issues.

I have mentioned LeukaemiaCare in other posts (and I suppose I should do an “About..” page) stressing the support functions of the charity, but one of its other roles is as a a patient advocate for new treatments of Leukaemias and Lymphomas.

Some background… There are many side effects of chemotherapy, including nausea, hair loss and fatigue caused by anaemia. Nausea is well controlled by anti-emetic drugs, and hair loss can either be lived with as the Yul Brynner/Sinead O’Connor look, or by using a wig, but the effects of fatigue caused by low haemoglobin (Hb) are usually counteracted by blood transfusions, and only when Hb drops below about 8 (normal minimum level is about 12).

The effects of anaemia induced fatigue is insidious, and it is not until you recover that you realise how bad it was. It is more than general listlessness – everything seems to be an effort, and even the thought of doing something trivial seems daunting. Even climbing a flight of stairs can be a major effort.

The standard treatment for severe anaemia is a blood transfusion, and while they work well, blood is expensive and there are risks associated with blood transfusions (although the majority take place without any side effects). Repeated blood transfusions for the treatment of chemotherapy induced anaemia can also lead to iron poisoning (one unit of blood contains about 250g of iron). Iron poisoning can adversely affect the kidneys and other organs.

There is an alternative treatment using an artificial hormone called Erythropoietin (EPO) which is to red blood cells what GCSF is to stem cells – in other words it stimulates the production of red blood cells which counteracts the anaemia. Needless to say it is expensive, but has many advantages such as conserving expensive blood stocks for those procedures where only blood will do, and has the potential to improve the quality of life for many cancer patients, especially those whose cancer is chronic and may need many blood transfusions over a long time.

EPO is available through the NHS for some conditions, but not yet approved for use in treating chemotherapy induced anaemia. It has been referred to the National Institute for Clinical Excellence (NICE) but has not been approved. Yesterday’s meeting was to raise the issue again, and to maintain LeukaemiaCare’s presence as a patients’ advocate organisation.

The wheels of bureaucracy grind slowly (but finely!) and the meeting was really a briefing session, which may lead to an appeal against NICE’s decision and/or a parliamentary question to The Secretary of State for Health about NICE’s remit and the use of EPO. Unfortunately it isn’t a ‘sexy’ subject and is unlikely to grab media attention, but the object is to keep on chipping away!

And perhaps one day it will become standard support therapy…