A patient who has had to wait for treatment through delayed appointments, misdiagnosis, lack of awareness, financial circumstances or lack of capacity is the best person to tell you what difference it made to be deprived of early access to drugs and therefore, treatment. Unfortunately, there are too many patients who fall into this category and I am one of them.

I was misdiagnosed for six years so what could have been a simple operation to remove a single tumour in my ascending colon ultimately became a high risk and expensive stage four operation. By that time, it was necessary to remove my entire ascending colon, my entire left liver and to treat my lymph.

It is essential to find a strategy that works and to have early diagnosis firmly in place across the board. What does it take to work out that early and correct treatment does not only save lives but also saves immense cost for the health system?

The effects of denying early access to drugs can clearly be seen in the effects of late diagnosis. Today, we have the knowledge to test and to treat the individual. Incorrect treatment is just as bad as a misdiagnosis.

We know that for every country:

• We need a screening plan
• We need to spread awareness to detect early signs of illness
• We need to acknowledge and respect younger patients when they have symptoms
• We need to order the right tests
• We need to explain all options of treatment
• We need to encourage patients to be involved in making decisions on their own lives
• Access to early treatment should not be a battle

Apart from medical costs, we have to consider other costs related to poor or late diagnosis:

• Cost of extra time in hospital
• Cost of the carer’s time, and time away from work
• Professional training and experience lost
• The emotional cost to the family: children losing a parent, partners losing a lover; lives changed forever. Cancer affects the whole family, not just the patient.

We need to think long term. We need to urgently review the way in which our whole health system works. Perhaps, rather than focusing on the cost of early access to drugs, we should consider the cost of denying it.

Barbara & Mark Moss
Patient Advocates Inspire2Live