I am so often focused on the problems with hemophilia in the developing world, it often still comes as a surprise to hear of problems with patients in developed countries, where hemophilia treatment is abundant and considered the world’s standard. Canada, Western Europe, Australia and New Zealand enjoy not only a high level of hemophilia care, but most have socialized medicine– which means everyone gets factor. But not all is perfect. While in the US we are battling tightened insurance coverage for the product and delivery company of our choice, in some countries patients are also battling compensation for blood infections from 30 years ago! Lately Scotland has been making the news, and just secured a landmark decision. Read below to see what is happening there.
The irony for the developing world is this: as most did not have access to factor concentrates during the 1970s and 80s, most were not infected with HIV or hep C. However, HIV is on the rise in developing countries through other means, not concentrates, and as patients often rely primarily on plasma for treatment, HIV and hep C rates there could potentially soar. This is why so many of us work to get factor concentrates to as many people as possible in the developing world. Later this year, I’ll be traveling to Africa, which has among the highest rates of HIV in the world, to assess care in several countries. Whether we live in developed or developing countries, our problems are not exclusive: we are all fighting for better care, greater compensation, and justice. In most cases, for simply the right to live.
by NICHOLAS CHRISTIAN
A PUBLIC inquiry examining how patients [with hemophilia] were infected with hepatitis through contaminated blood products is to be held, it was revealed yesterday. Hundreds of people in Scotland, including haemophilia sufferers and other patients, were given contaminated blood in the 1970s and 1980s. But the previous administration had resisted calls from victims and their families for a public inquiry.
The revised decision comes two months after an independent inquiry concerning the deaths of nearly 2,000 haemophilia patients who were exposed to HIV and or hepatitis C through contaminated NHS blood and blood products began in London.
Former Solicitor General Lord Archer of Sandwell, who is heading the public inquiry, said its purpose was to investigate the circumstances surrounding the supply of contaminated NHS blood and blood products to patients, the consequences for the haemophilia community and others afflicted.
At the time that inquiry was announced, former health minister Andy Kerr said there were no grounds for such an investigation in Scotland – although he added he would reconsider if fresh evidence came to light.
He said in February that there would be “no further practical lessons” to be learned from a government-led inquiry, arguing there had already been several probes into different aspects of the “unfortunate events”.
The full remit and timing of the inquiry have still to be decided by ministers. An Executive spokesman said: “The Scottish government believes in a more accountable health service, and a public inquiry in Scotland to find out why people were infected with hepatitis through NHS treatment is the best way forward.”