I saw a letter on the BBC website written by a number of neurosurgeons. They were writing to Patricia Hewitt the Health Secretary asking her to reconsider providing certain drugs for recently diagnosed brain tumour sufferers on the NHS. They said trials showed the drugs were extremely effective and beneficial. One of them was Temozolomide. I know it. It was prescribed to my husband in December 2000. For him it was a miracle drug. I think everyone who needs it should have it. Not enough attention is paid to people who suffer “minority illnesses” – but something so effective must be worth every penny. Not just in the regained economic productivity of the individual, but in the extra length and quality of life it gives to sufferers and their families. It meant my husband lived long enough for his youngest daughter to know him.
It hadn’t been around when he was first diagnosed in 1986 with mixed grade astro cytoma and some type glioma with a long name I forget. He’d had had surgery and radiotherapy. He seemed OK then for 5 years but then started to lose something – not easy to determine as it was slow. He had been articluate and started to “lose words”, he lost his emotional responses and avoided conversation. In 1997 he had more surgery – another large tumour was removed. This time no more radiotherapy – he’d previously had a maximum does – and there was no suitable chemotherapy. We were told it was now a matter of “when” and not “if”. They were very sorry – there was nothing else they could do. He’d probably be OK for three years, five if he was very lucky – but then it would be the end. We didn’t believe it. There would be a breakthrough in medical technology.
He went downhill rapidly from September to November 2000 – so fast that one Saturday we rushed him in to A and E. He walked in with severe head pains, sickness and blurred vision. Two days later he needed two nurses to move him around. By the end of the week he was in a wheel chair, could hardly speak and was loosing his sight. His doctor showed us the pictures. The tumour had returned, swelled and the pressure was distorting his brain. Hopefully the symptoms were caused by the pressure and not permanent damage. There was a new drug we could try. Temozolomide. It was supposed to be very good. We had insurance didn’t we. Why didn’t we give it a try. The doctor sent for the forms for me to sign. It was nearly 5pm and he was leaving for holiday in 20 minutes. He couldn’t prescribe the drug if I didn’t sign. He’d be back in a week. I looked at Andy. A week might be too late.
The form arrived. I couldn’t really understand it – my brains were in a whirl and the words wouldn’t stay in focus. I asked the nurse question – what excatly did it say I had to pay for? It looked like everything – not just the drugs. How expensive were they anyway. She didn’t know. She went to find someone else. The lights were turned out. The doctor was waiting to leave. Everyone else had gone home. I looked at Andy and I signed the form.
Andy was wheeled back to the ward. The ward he had just left. The bed he’s just been taken from – the same sheets. He’d been treated on the NHS for years. Now the bed in the ward was costng us. I can’t remember how much – maybe £200 a day – but I didn’t realise until I got the first bill in January 2001: something in the order of £16,000. Most people don’t realise. My GP didn’t realise. If you pay for the drugs you pay for everything else too: the bed, the nuring care, the consultations with the doctor, the pharmacist dispensing the drugs, the administrator arranging the appointments with the doctor, the use of the consulting rooms.
My insurance did pay – and it continued to pay between £1700 and £2000 per month for the next 13 months. How much do you pay for a life? In December 2000 we were warned Andy had about three months to live unless the drugs worked. The doctor didn’t tell us that – the nurses did when they suggested we should try to cope with him at home for his last few weeks. But the drug did work. By the middle of January he could walk and talk again. In May we took him on holiday and he got fit and well again. In June he went back to work. He stopped taking the drug in Feb 2002. It was chemo after all and was beginning to affect his blood count. He worked full time until August 2002 and part time until Jan 2003. He continued to live an independant life and join in family activities until July 2003. Then he started to get worse again. He was deteriorating rapidly and again losing his ability to speak and walk. In September 2003 he went back on the Temozolomide. It halted the rapid deterioration. He regained his mobility but his speach continued to worsen although more slowly. In March 2004 he took the drugs for the last time. By agreement, none were prescribed in April. By mid April he was totally dependent on us and im May he died.
I always wondered what it would have been like if the drug had been available when he was first diagnosed – or even after his surgery in 1997. I read the web sites and followed the research. The new medical technology gave us nearly four more years. Our youngest daughter was 8 when her father died. She remembers him. She nursed him. If it had not been for the drugs she would probably have been too young to understand and too young to remember.
I had to pay for my husband’s drugs (at least from 2000 – 2002). They saved his life – but what if I hadn’t had the insurance? Why should people with less money or less generous employers be denied such life saving treatment? There may not be enough in the NHS budget to pay for everything but how is the cost benefit worked out? Does it have as much to do with the number of voters affected as it does with the cost and efficacy of the treatment?