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The New Zealand Ministry of Health is not paying for SCT treatment of primary amyloidosis at this time. Their decision is based on the experience of three patients, two of whom died, and the third of whom is having an especially long and difficult recovery. Though the recovering patient, her family, and those of us who have been down this road all agree that the poor results are likely on account of delaying the initiation of treatment, our opinion has not so far carried much weight with the New Zealand Ministry of Health, who have chosen, in our view, to be part of the problem rather than being part of the solution.
Leukaemia Foundation of Australia - "This site has been designed to provide information and for people living with with leukaemia, lymphoma, myeloma and related blood diseases. " Amyloidosis, as it is a blood disease, is therefore covered under their charter.
"The Leukaemia Foundation has a national team of trained patient support staff who are available 365 days a year for patient care, family counselling, friendly advice, practical help or just simply understanding and personal empathy when it's needed most.
Please call 1800 620 420 (freecall) to speak to your local Support Service Officer, or to find out more about the services offered by the Foundation. Alternatively, contact them via the web site at http://www.leukaemia.com/leukaemia-foundation/web/index.asp
Services offered by the Leukaemia Foundation to people living with Leukaemia and related disorders include:
- Information, education and support
- A telephone service is on hand for anyone wanting to learn more about these
- Illnesses or the Leukaemia Foundation. This service includes counselling
- Information and education about diseases, treatments and their effects
We have information booklets and run courses and group workshops for people living with these illnesses. We can also give talks to schools, community groups and places of work.
Accommodations
Accommodation and other housing arrangements close to hospitals are available; these offer a 'home away from home' for you and your family while you are having treatment.
Transport
Courtesy cars and other forms of transport support are available in some areas to transport those who are at risk to and from treatment.
Practical Assistance
These illnesses can affect your normal way of life and there may be practical things we can do to help. By working with you, your doctors and social workers, we can find out the best way to care for you and your family.
Everybody's experience with blood disorders is different. They are more than happy to talk to you about how they can help. Living with a blood disorder is not easy, but you don't have to do it alone.
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