Haemophilia, HIV and women

HIV has had a significant, but still largely unrecorded impact on women in the haemophilia community. Women with bleeding disorders often find it difficult to have their conditions taken seriously because of the pervasive belief that haemophilia can only affect men. As explained above there are women with bleeding disorders and for those seriously affected they may have received blood products as part of their treatment and six were infected with HIV, many more with hepatitis C.

Over 60 women partners of people with haemophilia were also infected through sexual intercourse, some prior to the availability of the test for HIV over twenty years ago.

Historically in society the burden of caring has been taken up by women and this will have been the case in haemophilia. There may also have been feelings of guilt for mothers of children with haemophilia A or B from the genetic inheritance of haemophilia, the ineffective blood clotting gene coming from the mothers chromosomes and not the fathers, compounded if they were also the primary injector of treatment in children with haemophilia.

Mothers, wives and partners and siblings have often provided the care of men with haemophilia and took up the burdens of HIV as well. With HIV, this burden was exacerbated - not only by the illnesses associated with HIV infection, but also the culture of secrecy that grew up around it. It was no longer possible to discuss with friends and family - the normal sources of informal support - the reasons for and nature of the illness affecting their family member. It often had to remain a secret, even after the death of the infected individual. (Latimer).

Support for families and individuals living with haemophilia and HIV

For many, the main source of support in all areas remains the Haemophilia Centre. Many have helped establish and run support groups, provided counselling, etc. However, the nature of the transmission of HIV to the haemophilia community has also made it difficult for some to trust their centre, or feel comfortable receiving anything but the most basic medical support from them.

The Haemophilia Society continues to offer advice, support, information and services to people with haemophilia and affected by HIV, and continues to advocate for access to the best possible treatments, both for haemophilia and for HIV and Hepatitis C. The Society is involved in networking with other disabilities organisations, including HIV organisations, to campaign and advocate for the rights and needs of all those living with disabilities. However, the organisation is not HIV specific, and is necessarily geared towards the wider needs of the haemophilia community.

Birchgrove, initially a self-help group of people with haemophilia and HIV in South Wales has provided advocacy, advice and a regular national newsletter since 1990. In 2005 it changed its services, discontinuing the newsletter, but it still provides a website with back issues and news items. The group also sponsored the planting of 1200 trees and an inscribed rock at Stratton Wood near Swindon to celebrate the lives of the people infected with HIV through blood products. Details of how to visit the wood can be found on the Birchgrove website.

The Macfarlane Trust is the body set up to administer the recompense payments and the hardship fund set up by the Government for all those infected and affected by HIV within the haemophilia community. The Government were very specific in stating that it was not compensation because that would imply fault and there was no admission of negligence when the case was settled out of court. It was initially set up to administer a hardship fund and was then used as the vehicle to make the out-of-court settlement payments. The Trust provides regular payments to those with haemophilia and HIV and partners who were infected. The dependants and those who have been bereaved are entitled to some specific grants from the Trust and may apply to the hardship fund for help. In addition, the Trust makes one-off grants to those with particular needs and organises events for people with haemophilia and HIV to meet up, share experiences and look toward the future. Its website also provides a bulletin board restricted to recipients of the Trust's regular payments allowing people to communicate and share feelings with one another.

Conclusion

Haemophilia is a genetic condition and so it was not unusual for more than one person in a family to have been infected with HIV. This had a devastating effect on families and many of those who have survived saw and helped care for other family members who died. Anyone who had friends amongst other people with haemophilia, attended the boarding school that specifically catered for people with bleeding disorders or got involved in Birchgrove may well have dealt with multiple bereavements similar to those experienced by gay men infected in the 1980s and 90s. As of January 1^st 2000 over 800 of the 1246 originally infected had died (UKHCDO).

The infection of the haemophilia community with HIV through contaminated factor concentrate is one of the most devastating post-war health care disasters. The lurking fear is that it may have been a catastrophe that could have been avoided or minimised at the very least. The failure of governments worldwide to address the AIDS epidemic contributed to the high death toll amongst people with bleeding disorders. Had AIDS been taken seriously in 1981, it is probable that significantly fewer people with haemophilia would have been infected. If governments and drug companies had considered seriously the risks posed by viral hepatitis in the late 70's, even fewer would have contracted HIV infection.

Politicians have paid their price. What was perceived as a heartless approach to the issue of compensation certainly did not help Mrs Thatcher prior to her resignation as prime minister; the Irish Government collapsed over their inability to deal effectively with the problem of infections in blood products; criminal prosecutions were brought against bureaucrats in the French health service, whilst the former French Prime Minister, Laurent Fabius, and two of his ministers were unsuccessfully tried in 1999, accused of delaying the introduction of screening measures for HIV in blood and plasma during 1985. In Canada, scandals have rocked both former government ministers and the Canadian Red Cross as a result of the Krever Report into the use of contaminated blood and blood products.

Throughout the world governments have been forced to make payouts to HIV-positive people with haemophilia, some larger and some smaller. As ever, the haemophilia community has had to fight tooth and nail with drug companies and governments to have their case recognised and litigation continues even today with over 2000 people with haemophilia, HIV and/or HCV from the UK and other countries, taking legal action in America against the companies that produced blood products during the 1970s and 1980s. Where there has been financial recognition, such remuneration is a scant recompense for the ruin of lives and the thousands of deaths.

Contacts

The Haemophilia Society
First Floor
Petersham House
57a Hatton Gardens
London
EC1N 8JG
020 7831 1020
http://www.haemophilia.org.uk/

Birchgrove
http://www.birchgrovegroup.org/

The Macfarlane Trust
Alliance House,
12 Caxton Street,
London,
SW1H 0QS,
020 7233 0057
http://www.macfarlane.org.uk/