People with sickle cell disease and thalassaemia must not be forgotten when the government review prescription charges, according to the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia.

The APPG on Sickle Cell and Thalassaemia met for the first time last week to address the health inequalities faced by sickle cell and thalassaemia patients in the UK. Following the government’s recent move to make cancer patients exempt from prescription charges, the group agreed that sickle cell and thalassaemia must be included when a government commissioned review looks at abolishing prescription charges for other patients with long term conditions early next year.

Chair of the APPG on Sickle Cell and Thalassaemia, Diane Abbott MP, said “It is alarming that people suffering from sickle cell disease and thalassaemia have to pay for prescriptions. Health professionals tell us the average sickle cell patient needs up to six prescriptions a month, with thalassaemia patients needing up to eight prescriptions a month. While Prescription Prepayment Certificates are available to reduce the cost (£102.5 for 12 months), those unaware of this benefit could face annual prescription costs of up to £681. This could mean some patients are unable to purchase the treatments that are essential to keep symptoms under control. It is unfair these charges put further pressure on people who are already living with a debilitating disease.”

Dr Lorna Bennett, Trustee of the Sickle Cell Society said: “Patients with sickle cell tell us they are struggling to pay for their prescriptions. Other people with long-term conditions such as diabetes get prescriptions free of charge, so why should sickle cell patients, who have a long term condition, have to pay for theirs? Patients believe this to be discriminatory and it is time that sickle cell patients got a fair deal.”

Dr. Chris Sotirelis, Vice President of the UK Thalassaemia Society (UKTS) said: “Until recently, thalassaemia patients did not survive past childhood. While medicine has advanced to ensure thalassaemia patients live well into adulthood, the charges for prescriptions are outdated. Patients with thalassaemia face many challenges, but paying for their prescriptions should not be one of them. ”

Sickle cell disease and thalassaemia are both lifelong inherited blood disorders. Both diseases are caused by inherited genes that create defective red blood cells. People with sickle cell have sickle-shaped blood cells that can build up and cause blockages in small blood vessels, causing severe pain known as a sickle cell crisis.1 People with thalassaemia have low levels of haemoglobin in their blood which means they do not receive enough oxygen, resulting in anaemia.2 They require blood transfusions every 3-4 weeks.3

People with sickle cell can require various treatments including pain relief, folic acid and antibiotics4 while thalassaemia patients can need antibiotics, bone strengtheners and hormone replacements.3 There are approximately 12,500 people with sickle cell1 and the UKTS estimate there are around 1,000 transfusion dependent people with thalassaemia in the UK.

References

1. NHS Choices Health A-Z. Last accessed on 11.12.08 from
nhs/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx?url=Pages/what-is-it.aspx.

2. NHS Choices Health A-Z. Last accessed on 11.12.08 from nhs/conditions/Thalassaemia/Pages/Introduction.aspx?url=Pages/What-is-it.aspx

3. Standards for the Clinical Care of Children and Adults with Thalassaemia in the UK 2008. Blood transfusions, page 12; antibiotics, page 41; Bone strengtheners and hormone therapy, page 57.

4. Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK. Page 23 Section 2.3.2.1: Roles and responsibilities of the GP practice.

The All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia exists to reduce the health inequalities that are faced by sickle cell and thalassaemia patients in the UK, by improving standards of care and by addressing other critical issues, as recommended by the key stakeholders. Members will achieve this aim by engaging with Parliamentary colleagues, the Government, health professionals, and community and patient groups to raise awareness relating to the conditions and the needs of patients.

Political Intelligence is paid by Novartis Pharmaceuticals to provide secretariat services for the APPG. The preparation and distribution of this press release by Red Health has been supported by an unrestricted educational grant from Novartis Pharmaceuticals.

For more information on the Sickle Cell Society, visit sicklecellsociety

For more information on the UK Thalassaemia Society, visit ukts

Source:
Melanie Strutt
Sickle Cell Society