Advocacy Contaminated Blood Events Factor 9 Hepatitis C HIV News Penrose Inquiry Scottish Government Scottish Parliament

MSPs raise the contaminated blood disaster while debating Hepatitis C

Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Kevin Stewart MSP - Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Kevin Stewart MSP – Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

Last night’s Scottish Parliament debate about Hepatitis C was well attended for a debate of its type with over 20 MSPs in the chamber. The debate’s main focus was the progress which has been made to irradiate Hepatitis C in Scotland and the opportunities offered by the new, interferon-free, treatments.

Kevin Stewart MSP (SNP) who had secured the debate, made the opening statement. His remarks included,

Scotland has been hailed as a world leader in tackling hepatitis C; we have been really successful in tackling the virus and we must recognise the work of successive Scottish Governments of various political hues for their handling of the issue. However, we know that nearly 40,000 people in Scotland are infected with the hepatitis C virus, a blood-borne virus that can cause fatal liver damage and cancer if it is left untreated. We know that about 45 per cent of folk with hep C in Scotland remain undiagnosed and that only about 3 per cent of those with the virus receive treatment each year. We know that hepatitis C affects people from our poor communities much more than those from richer airts and pairts, with some 75 per cent of sufferers coming from the lowest two socioeconomic quintiles.

A recent Hepatitis Scotland and HIV Scotland report found that welfare changes had resulted in 58 per cent of people surveyed with hepatitis C and HIV experiencing poorer mental health, 48 per cent suffering poorer physical health, 45 per cent struggling to pay fuel bills and 39 per cent struggling to buy food.
He then gave some moving case studies of how Hepatitis C has affected people in Scotland.

Malcolm Chisholm MSP - Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Malcolm Chisholm MSP – Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

When Malcolm Chisholm MSP (Lab) spoke he followed his remarks on the wider situation by turning the debate towards the contaminated blood disaster and Penrose Report.

Many people with hepatitis C contracted it through injecting drugs, which is why a lot of the prevention activity is around that, but we cannot forget the several hundred people who have contracted it from blood products. That issue was of great concern in the early years of the Parliament, and it led to ex gratia payments being made, which was started by the Scottish Parliament then copied by the UK Parliament.

We all know that the Penrose Inquiry will report in March, and we must be mindful of the issues around that very complex situation. We all look forward to reading the conclusions of that report, and I believe that it will lead to demands for further payments. Constituents of mine are still contacting me about that. We must not forget that there are still a large number of people who contracted hepatitis C in that way, and we must do all that we can to meet their specific needs and circumstances.

During the debate his lead was followed by Anne McTaggart MSP (Lab) who highlighted the case of her consituents and raised the need for those affected by the contaminated blood disaster to have access to the best possible treatment.  She also highlighted the difficulties faced in accessing life insurance and suggested a scheme, similar to the one in place in the Republic of Ireland, would be appropriate.

I have recently been contacted by two constituents who have haemophilia and have contracted hepatitis C as a result of their having been given contaminated blood products by the national health service. The hepatitis C has left them with cirrhosis of the liver. My constituents are concerned that treatments that are currently available on the NHS are less successful than some that are available abroad, and they believe that all haemophiliacs in this country should be entitled to the most effective drugs and treatments, regardless of cost and the country in which they are administered. The Scottish Government should seek negotiations with the pharmaceutical companies on the cost of those drugs.

My constituents also state that sufferers of haemophilia are unable to secure life insurance because of their medical condition and expected shortened lifespan. They believe that the Scottish Government should take responsibility for payment of life insurance policies that would after their deaths offer stability and security to their families. I have written a letter to the Cabinet Secretary for Health, Wellbeing and Sport about each of the cases that I am dealing with and I am still awaiting her reply.

Johann Lamont MSP - Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Johann Lamont MSP – Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

The next speaker to refer to the contaminated blood disaster was Johann Lamont MSP (Lab) who praised the joint Haemophilia Scotland / Hepatitis C Trust parliamentary reception last month hosted by Richard Lyle MSP (SNP).  In particular the powerful performance of some of Factor 9 by Dogstar.  She said,

However, as Malcolm Chisholm and others reflected, it is inevitable that we also think about the impact of the use of contaminated blood and the consequences for those who then contracted hepatitis C and other conditions. We know how important it is to tackle the disease, but I trust that the Presiding Officer will permit me to add some thoughts specifically on contaminated blood.

One of the many helpful briefings that we received for the debate states:

“Anyone who looks dispassionately at the issue feels that the state has a moral duty to the infected.”

As someone who was elected in 1999 and was here in the first session of Parliament, I know that the issue has been politically live since the Scottish Parliament opened. A lot of time and energy has been used in addressing the challenge, but too many of those who have been affected still feel that insufficient progress has been made. All members in the chamber will know those who are still actively campaigning on the issues. The reality is that many questions and significant issues remain unresolved.

At a recent presentation in the Parliament, which I think was hosted by Richard Lyle, we had a powerful presentation by those who are campaigning on the impact of contaminated blood on people’s lives. We could be in no doubt about the degree to which anger and passion remain or about the determination to have the questions addressed.

Even more powerful was the direct meeting that I had with a constituent who wanted to talk about the impact on her and her family of losing a family member—a loved one—as a consequence of his contracting hepatitis C. He was a haemophiliac, and he was given contaminated blood as a child. I want to share my constituent’s thoughts and give voice to the desire, which is held not just by her but by others, to ensure that the really significant questions are answered.

My constituent outlined the reality of the stigma that was associated with being found to have hepatitis C, or HIV for that matter, in the 1980s and 1990s. I know that we have made huge progress, but more still has to be done. At that time, the consequence was that her loved one could not share the truth of his condition with the broader family or with friends. They could not speak to anybody else, and inevitably the pressure on them as a couple became immense. The person who was suffering was silenced and the immediate family could not share their anxieties or fears with anyone else.

It was therefore not just a physical condition, as emotional distress came with it, too, and that lived out for as long as the person lived. There was anger at not getting action but possibly also a sense of guilt about being a parent who had sanctioned the transfusion in the first place. Those are all immensely powerful consequences for people’s lives.

There is now huge hope and expectation around the Penrose inquiry. The significance of the question of compensation has been highlighted. That is absolutely right and it is understandable, but what my constituent wants more than anything is answers. She wants to know how this could have happened at all and why, even when problems were recognised, the system continued to be reckless, with consequences for many people.

Specifically in relation to the Penrose inquiry reporting, I ask the minister the following questions. How will families be briefed on the findings? What will the Scottish Government do to ensure that they know quickly what the recommendations are? What will be the timescale for implementing the recommendations? How will the compensation issues be pursued? Centrally, I hope that the minister can give an assurance that the Government will address the anger. The state must have a responsibility to those who suffered so grievously. So many people continue to live with the condition or with the pain of having lost somebody in these circumstances.

I am sure that members throughout the chamber want to see massive progress on addressing hepatitis C and, in particular, hope that the findings of Penrose will come as a comfort to those who have been campaigning for so long.

We were particularly please that she used a line from our briefing to illustrate the moral dimension in the case of the contaminated blood disaster.

Maureen Watt MSP (SNP), Minister for Public Health, responded to the debate on behalf of the Scottish Government.  She only touched briefly on the contaminated blood issue saying,

I am not going to get into the Penrose inquiry during this members’ business debate; that is for another day. When the report is published, I am sure that it will be brought to the chamber and dealt with specifically.

Overall, it was a very good debate and we are grateful to Kevin Stewart MSP for his work to secure it.  We are particularly pleased with the cross party support for maintaining Scotland’s world leading efforts to irradiate Hepatitis C in Scotland and the understanding of the serious side affects of interferon based treatment.  We are also grateful to all the MSPs who raised the need for a fair and just settlement for those affected by contaminated blood.  You can read the full transcript of the debate on the Scottish Parliament website.

It is vital that this issue is debated, in its own right, after the publication of the Penrose Inquiry Final Report on March 25th.  Richard Lyle MSP (SNP) has continued his record of strong support on this issue by tabling a motion calling for a debate which is already attracting strong support from all parties.

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