When we are ill we expect to be given the medication or surgery that will be the most effective at making us feel better. But how would you feel if you knew that your doctor would not prescribe you the right medicine simply because it was too expensive? For some groups of patients, this is the worrying reality they are facing.
I have been working with patients who suffer from primary immunodeficiencies, which means they don’t have a properly functioning immune system. The conditions are mainly genetic, and about 1 in 500 people will be born with one. I am campaigning for the most serious disorder, SCID, to be screened for at birth, because if it goes undiagnosed the child will die in their first few months of life. If diagnosed the child can be cured for life.
For those living with an immunodeficiency it is vital that they receive the right treatment for them. Without it they will suffer from constant and serious infections. The good news is that with appropriate immunoglobulin therapy most patients can lead a normal life. The bad news is that some of these therapies could be deemed too expensive.
Medical treatments are subject to something called Health Technology Assessments, which should take into account the social, ethical, and economical benefits of using a certain treatment. However, in the current climate it seems that sometimes the only real consideration is how much the treatment costs. There are some really worrying outcomes from these assessments, including one in France that recommended not screening blood donors for Hepatitis C because it would be cheaper to just treat the people who found themselves infected with the disease after a blood transfusion.
Not only does this kind of approach disregard the human element of medical treatments, which should be at the heart of healthcare, but it is economically short sighted too. Healthy people can go to school, university and work and contribute fully to society. It may be true that you can reduce the amount of immunoglobulin that an immunodeficient patient receives by half and the patient will remain alive. However their quality of life will be severely worsened as they fight of repeated infections and have to struggle every single day with their condition.
I will be working on the EU’s new Health for Growth Programme to make sure that Health Technology Assessments always take the view of the patient into account, and not just the costs of treatments.