As a recipient of Human Pituitary Hormones, Human Growth Hormone (HGH) or Human Pituitary Gonadotrophin (HPG) or other at risk person:
Can i donate blood?
No. Currently the Australian Red Cross Blood Service questionnaire identifies and defers recipients from donating blood or blood products.
Can I donate organs?
Yes. You can register as an organ donor. Registration forms can be collected from any Medicare office or you may register online at www.hic.gov.au/organ
The Australian Organ Donor Register (AODR) does prefer that you register as an organ donor only (no tissue), or flag that you are a hPH recipient. Any organs donated to a organ recipient would be offered on a informed consent basis.
Can I become a bone marrow donor?
Not as this stage. Criteria for a bone marrow donation involves the ability to donate blood. We are hopeful that this may be changed in the future.
Can my children donate blood and organs?
Yes. There is absolutely no reason why children of hPH recipients cannot donate blood, organs or tissue. Children of hPH recipients are at no greater risk of CJD than the general public.
What is my health risk status?
“Low risk” of CJD.
Have there been any more deaths of recipients of human pituitary hormones in recent years?
No – the last case was in 1991.
What is a Medical In-confidence Letter (MICL) and how do i receive one?
The Medical In-Confidence Letter (MICL) is available for hPH recipients either by requesting a copy from the department of Health and Ageing (1800 802306) or contacting your support group coordinator. The MICL is just to assist you if you want to advise a medical practitioner of your low risk status. It is personalised and gives details of treatment and contact numbers for health workers so more information can be obtained.
The use of a MICL should not be necessary for general surgery or routine dental procedures- only operations involving high infectivity sites.
High infectivity sites for low risks patients are the brain, pituitary gland, spinal cord, eye (retina and optic nerve). In dentistry they include maxillofacial surgery or endodontic procedures (root canal therapy).
There is no obligation to carry or provide this letter. If you have a MICL but are unsure if it is current contact the department of Health and Ageing 1800 802306.
How do I join the CJD support group network?
Ring or email us if you are a recipient of human pituitary hormones or are at risk of CJD and would like to join our network.