Guest blog: How frequent testing changed my life

Guest blog by Philip Baldwin:

I am always struck by the diversity of people diagnosed with hepatitis C. As a community of patients we are very varied and we can learn a lot from each other.

I have attended several sessions of the Infected Blood Inquiry, where I heard powerful stories of people whose lives were impacted forever through blood transfusions or clotting agents. I was inspired by their bravery in confronting not just hepatitis C, but multiple institutional challenges and health inequalities.

The victims of infected blood have fought not just the virus, but also to have their voices heard, which many of us across the hepatitis community can relate to.

At other events I have often felt deeply saddened when listening to accounts of people living with hepatitis C who, despite complaining to medical professionals about pain, headaches or other maladies, were undiagnosed for decades. Because of this, sometimes due to the ignorance of General Practitioners, they have gone on to develop fibrosis, cirrhosis or even liver cancer.

My own story is very different. I am a gay man and was 24-years old when I was diagnosed with both HIV and hepatitis C in January 2010.

I reflected on what aspect of my story is most relevant to the many people who have been impacted by hepatitis C and the campaigning we are engaged in today. We now have the potential to eliminate hepatitis C by 2030, or earlier, in the UK, as long as we identify the tens of thousands who are unknowingly living with the virus, or who fell out of the treatment pathway.

From my own experience, one of the most valuable lessons which can be learned is the importance of routine sexual health screening. I first visited a sexual health clinic when I was 17. A kind nurse took me to one side and spent 15 minutes filling in some of the many gaps in the Sex and Relationships Education I was receiving at school.

She recommended that I should come in for a full STI screen every six months and also that I should be vaccinated for two viruses called hepatitis A and hepatitis B. At the time I knew nothing about hepatitis at all. The hepatitis A and B vaccinations, she explained, were administered as a series of injections and, as I was already at the STI clinic, I might as well have the first of these straight away.

I followed the nurse's guidance and continued to attend sexual health clinics at least twice a year, as I progressed from school to university and then when I moved to London.

It was a horrific moment when I found out that I had both HIV and hepatitis C. I had started my first job in August 2009 and was right at the beginning of my career. It would be impossible to exaggerate the pain, grief and profound sense of loss triggered by my diagnoses.

However, in retrospect, I was in some ways fortunate. My HIV and hepatitis C were picked up early on. As the viruses could, back then, take up to three months to appear in tests, I had probably become HIV and hepatitis C positive from a sexual partner between April and November 2009 (my previous test having been in April 2009).

I was assigned an HIV and hepatitis C specialist straight away. He became a rock in my life. He made sure I was really informed about treatment options and suggested that I should stop drinking alcohol, as this was now in his view the greatest danger to my liver. I stopped drinking alcohol completely for about four years.

My hepatitis C was treated with direct-acting antiviral drugs at the end of 2016. The course of pills was taken orally and lasted 12 weeks. I found it to be side effect free. In 2017 I was declared clear of hepatitis C. Because of my early diagnosis, my liver was not damaged at all.

This World Hepatitis Day, I encourage everyone to test more regularly for STIs and blood-borne viruses, including hepatitis C. That was how my hepatitis C was picked up so quickly and is why I have no long term liver damage. I would also encourage everyone, whatever your circumstances, to consider vaccinations for hepatitis A and B.

Follow Philip's journey on Twitter and Instagram: @philipcbaldwin