Colette Wintle is one of a rare group of female haemophiliacs living with a bleeding disorder. On July 22, Colette and I met with Anne Milton, Parliamentary Under Secretary of State For Health to discuss how the contamination of haemophiliacs with HIV and hepatitis C (HCV) through NHS treatment had specifically affected women in our community. (Haemophilia is an inherited condition usually associated with men). Rowena Jecock from the Blood Policy Team at the Department of Health (DOH) and civil servants were also present at the discussion.

Political scientist Anne Marie Goetz defines gender justice as “the ending of and the provision of redress for, inequalities between women and men that result in womens’ subordination to men.” We both felt it important that female voices were heard as over the years, patriarchal attitudes still persist. This has resulted in a poorer quality of patient care for Colette as a female haemophiliac suffering from hepatitis C.

There has also been a lack of recognition for carers and bereaved partners of haemophiliacs (predominantly female) to be assessed in their own right rather than as an appendage of their husband. Government trusts set up were negotiated originally by men and the financial provision has been grossly inadequate. The rights of women were sadly neglected with some widows whose husbands had died of hepatitis C related complications not receiving a penny in compensation; therefore existing on the poverty line.

"We both felt it important that female voices were heard as over the years, patriarchal attitudes still persist. This has resulted in a poorer quality of patient care for Colette as a female haemophiliac suffering from hepatitis C."

Colette was able to secure a meeting through her long standing contact with Earl Howe and we were informed that Anne Milton was “immediately receptive” to our request, and indeed expressed an interest in learning more about the particular issues for women. We welcome the Coalition Government’s positive move to review the situation of the haemophilia community. The minister recognises the “unique” situation of those infected and wants the matter “sorted by Christmas”. Our main aim was to promote the full implementation of the Archer Public Inquiry which included an initiative my late husband and I first set up in 1996 (and which was adopted by Lord Archer) - compensation on a parity with haemophiliacs in Ireland.

Colette relayed her personal circumstances as a female “bleeder” wife and mother, and the importance of women contributing to the medical profession’s understanding of her condition and the specific nursing care provision required. She also gave an example of the extra costs of funding alternative treatment. For example, oestrogen based Hormone Replacement Therapy for the menopause available on the NHS impacted on a failing liver already compromised by hormonal imbalance due to HCV, so alternative non oestrogen therapies had to be bought.

I presented the importance of assessing a woman’s losses as a haemophiliac’s partner, carer and widow. What price can be put on losing your loved one, not having children through fear of infecting them with HIV/HCV, loss of career (women were often the main wage earners with haemophiliacs on disability benefits), loss of wages, pension rights, partners unable to get life insurance so no financial security and sometimes having to sell the family home to make ends meet...? Many of the bereaved had suffered both physical and psychological problems such as depression and Post Traumatic Stress Disorder. I argued the case that any compensation awarded should not be means tested and should reflect multiple losses and financial need as in Ireland.

The dialogue was helped by the fact that Colette, Anne and I all have a nursing background and one of the first issues we tackled was the government’s repeated reference to the “worst medical treatment disaster in the history of the NHS as an “inadvertent infection”. Colette presented the Minister with a quote by haematologist Charles Rizza which my late husband Pete discovered in a book - AIDS: HIV The Myth by Jad Adam.

Rizza said, “We recognise in the mid 70s that all of the concentrates (haemophilia treatment) were infected with non-A, non-B hepatitis” and that “factor VIII is still very impure, it could be called a crude protein concentrate contaminated with Factor VIII”! Anne stated that the Department of Health’s language would now be changed to reflect this (a major step forward). She was also presented with a copy of my research into contaminated blood providing a chronological history of the “bad blood” disaster. The dissertation identified serious safety violations in blood policy and will now be read by a DOH virologist. I suggested that learning about the blood tragedy should also be on training programmes for medical students.

The government is now “sorry” for what happened. Alongside haemophiliacs the minister was also asked to consider a government apology to Lord David Owen for the shredding of his documents as Health Minister when he supported the haemophilia community, an act which he said was unprecedented. We feel an apology must also go to the family of deceased virologist Spence Galbraith whose warnings to withdraw contaminated American prison blood because of the serious risk of AIDS were ignored in 1983 when many lives could have been saved. Dr Galbraith went to his death without resolution.

I shared with Anne and Rowena a phone call I received from the former DOH advisor who had ignored Galbraith’s warnings and who phoned me one Saturday morning, speaking for over an hour admitting he had made a terrible mistake. He also said “sorry” which was so important and admitted that “treatment was not so ethical then”. (I am withholding his name from publication as I accepted his apology and he must live now with the consequences of his actions)!

The Minister stated she could not make any promises as any proposed solutions are not her decision alone but she requested that we send in written proposals with suggestions as to how a satisfactory outcome might be achieved. Campaigners are already working with MPs to ensure supportive politicians call for a backbenchers’ full debate on contaminated blood in the Commons. The fact that the government are now acting will hopefully bring “closure” to many within the haemophilia community in the near future after years of fighting for justice. The hope is too that women will now be awarded justice on an equal scale to men.

Words: Carol Grayson

Photos: First pic - Female haemophiliac, Colette Wintle, and widow of a haemophiliac. Carol Grayson, both campaigning outside the Department of Health with " bad blood" t-shirts
Second pic - Colette Wintle and Carol Grayson with fellow campaigner who is about to hand in wreath to the DOH to remember deceased haemophiliacs.
Both photos courtesy of Adrian Goodyear and Hass Efe Hussein
Third pic – Anne Milton, by Flickr user Fitness Industry Association

Disclaimer: This article has been written by Carol Grayson (from an individual’s perspective), and is not necessarily reflective of Christian Aid/Ctrl.Alt.Shift views.