Michelle's story
So, here's the thing. My name is Michelle Tolley and I am 52 years old. I married the love of my life who I met through work on the 27th of October 1984. Our first son was born in September 1987; he was a big baby and weighed 10lb exactly. I needed a blood transfusion and received four pints of blood.
Michelle Tolley
Just Treatment patient activist Norwich
Photo credit Simon Finlay
Sadly, a year later I had a miscarriage. We found to our delight in 1989 we were expecting another baby. After the scan we were informed we were having a boy, but to our delight a little girl appeared instead. The pregnancy was full of sickness and I was admitted into hospital many times. I had some routine blood tests later in the pregnancy and was told that I had gestational diabetes - another letter from the Blood Bank advised me that I had antibodies in my blood. I still have the card to date. It recommended that should any future transfusions be needed they would need to be carefully cross matched.
Later again, in February 1991, I gave birth to twins. They were born by emergency cesarean section and I needed to have a further blood transfusion.
Fast forward now to the end of November 2015: I was ill, and I mean ill. By chance and due to a diabetic test, I was called in to see my GP. My liver results and some others were not right. I am not sure why, but I mentioned to the GP that I had two blood transfusions after childbirth and the last was February 1991.
It’s important to mention here that back in the 1990s, TV adverts warned about the risk of receiving contaminated blood and hepatitis C through blood transfusions. At this point I was a young mum of four and, having had several transfusions, I decided to phone the number for advice. I also approached my GP at the time to ask for a hep C test on the basis of having received these transfusions. Sadly I was sent away and he left me feeling like I was completely stupid. He sent me on my way telling me that it wasn’t possible I could have hep C!!
The past two years have been a very big learning curve and journey for me.
I was finally diagnosed with hep C at the end of November in 2015 after years of health complications, and having never known what the root of the problem was.
By the time I finally received my diagnosis, I already had cirrhosis of the liver. I was very ill. The effective new direct-acting antiviral (DAA) drugs for treating hep C were rationed because of the high price, but I was told that I could access them as my situation was so severe. However the following week the hospital rang me to tell me that the number of patients they could treat was being reduced and I’d have to wait for treatment!
“Having waited 28 years and suffering untold health problems, I was now being told that I couldn’t access treatment!”
I was furious. Having waited 28 years and suffering untold health problems, I was now being told that I couldn’t access treatment! I went to the local radio station and kicked up a huge fuss. In the end they agreed to treat me and I received the treatment within two weeks. I think it is disgraceful that pharmaceutical companies are allowed to monopolise the price of drugs. It is also very wrong that where you live can determine if you are eligible to be treated.
At the same time, I know that I’m one of the lucky ones - so many people have died waiting to be diagnosed or to access treatment. And although I was grateful to be treated I felt guilty that others in similar situations were being forced to wait. Why are we put in that situation? This should never be the case.
I’m really angry about the way that the contaminated blood scandal has been dealt with, and am campaigning to make sure an enquiry finally happens and that we get answers. I wanted to get involved with Just Treatment because we also have to fight the pharmaceutical companies and their high drug prices to make sure that people like me can access these life saving drugs when we need them and I will help in any way that I can.
“Although I was grateful to be treated I felt guilty that others in similar situations were being forced to wait.”
Media has been a blessing and I have been very fortunate to be on Panorama in May 2016 and other media sources along my journey. This has allowed me to try and help raise awareness in what has been called the worst tragedy in the history of the NHS. It is time for the government to ‘right this horrific wrong’.
I am now clear of hepatitis C, but because I was so ill at the time I was treated then I had to undergo a long course of treatment which led to other health complications. So my journey continues with ongoing medical problems...
Thank you for allowing me to share my story. I hope that by sharing it, more people will understand why it’s so important that we bring down the price of drugs so that everyone can access the treatment they need, when they need it.