Baroness Randerson's visit to the Royal Free

Baroness Randerson, Co-Chair of the All-Party Parliamentary Group on Liver Health, hears from hepatitis C patients and health professionals about the impact of NHS England’s cap on treatment.

On World Hepatitis Day 2016, Baroness Randerson paid a visit to the liver unit at the Royal Free London NHS Foundation Trust, in her role as Co-Chair of the All-Party Parliamentary Group on Liver Health. Visiting the service alongside The Hepatitis C Trust, Baroness Randerson spoke directly with consultants, nurses, pharmacists and with people waiting to access the new anti-viral treatments, some of whom have resorted to buying the drugs themselves from foreign countries as a result of NHS England’s unprecedented cap on treatment access.

Reflecting on the visit, Baroness Randerson commented that “my discussions with hepatologists and other health professionals about the difficulties they face in treating a rising number of patients for liver disease, including that caused by alcohol and obesity, has further opened my eyes to the urgent need to adopt a coordinated strategic approach in England – from prevention through to treatment and care - for tackling all major causes of liver disease. I was also moved by my discussions with patients about their struggle in trying to access new hepatitis C treatments on the NHS, and the challenges that clinicians and other health professionals are up against in working within the bounds of the ‘run rates’ for treatment that have been set by NHS England.”

Dr Douglas MacDonald, Clinical Lead for North Central London ODN and Chair of all London ODNs, fed through to Baroness Randerson that “…we had designed a hepatitis C patient charter here at the Royal Free, but this is now redundant; with the current run rate situation, it is impossible to give patients any certainty. Many have gone to four or six different appointments, each time to be told they will receive treatment at the next, and we have no choice but to let them down again and again…”

Whilst at the Royal Free, Baroness Randerson met with Barbara Saunders, who described her experiences of living with hepatitis C for many years whilst working full-time, until rheumatoid arthritis and other symptoms relating to the disease became too much to cope with, causing chronic physical and mental exhaustion that impacted on her family and work life. Speaking to Baroness Randerson, Barbara expressed her wish to “add my voice to why NHS England is letting people down through its decision to limit access to the new, highly successful treatment for chronic hepatitis C infection.”

Barbara is one of a growing number of people with hepatitis C in England who are buying generic versions of new curative drugs via the internet after having their access restricted by NHS England, despite the National Institute for Health & Care Excellence (NICE) approving them as cost-effective for use on the NHS. Speaking to Baroness Randerson and the Trust, Barbara relayed how “Finally, at aged 60, my desperation led me to a completely terrifying option…I bought a generic version of the drugs through fixHepC, an Australian / Tasmanian website. I was obviously worried that at best they would be fake but harmless, and at the worst something toxic. So far so good: the drugs seem to be genuine and the first blood test results have been good.”

Considering the wider implications of NHS England’s cap on treatment access, Barbara argued that ‘these drugs cost me approximately £1,300. Clearly not everyone will be able to afford this, nor will many wish to accept the risk of buying over the internet…”

The desperate situation that Barbara found herself in, driven to buy drugs online due to suffering from a range of different symptoms relating to her hepatitis C, echoes the experiences of other patients Dr MacDonald has cared for: “…the economic benefits of treating hepatitis C have been wildly underestimated: We have come across a number of patients who have had to stop working because of the impact of the virus on their lives. What is often not understood is that hepatitis C is not just about liver disease; it’s about a whole panoply of other symptoms – including neurological problems such as ‘brain fog’. The burden of stigma experienced by people with hepatitis C is also not a trivial element.”

On behalf of people affected by hepatitis C, many of whom are among the most disadvantaged in society, The Hepatitis C Trust is currently waiting for permission to be granted for a judicial review against NHS England’s unprecedented national cap on treatment.

Are you experiencing uncertainty and delays in accessing new all-oral, anti-viral treatments for hepatitis C? Support The Hepatitis C Trust’s campaign by donating to here.

The Hepatitis C Trust runs the secretariat for the APPG on Liver Health, a cross-party group of MPs and Peers who have come together to tackle the growing problem of liver disease and its major causes. The APPG holds meetings and events and publishes reports to raise awareness of liver disease in Parliament. Find out more about the work of the group here.