hPH Frequently Asked Questions

As a recipient of human pituitary hormones, human growth hormone hGH or human pituitary gonadotrophins: Can I donate Blood?

No. Currently the blood bank 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 at all Medicare offices or you may register on line by visiting www.hic.gov.au/organ

The Australian Organ Donor Register (AODR) does prefer that you register as an Organ donor only (not tissues), or flag that you are a hPG recipient. Any organs donated to a organ recipient would be offered on a informed consent basis.

Can I be a bone marrow donor?

Not as this stage. A criteria for being a bone marrow donor is that you are able 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 tissues. Children of recipients of hPH are at no further 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 recipients of hPH by either 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 to be able to obtain more information.

A new copy, in line with the new Infection Control Guidelines will be available early 2005 and automatically forwarded to all recipients who have a current copy.

The use of 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 Brain, Pituitary gland, spinal cord, eye (retina and optic nerve) and in dentistry maxillofacial surgery or endodontic procedures (root 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 become a member of the CJD Support Group Network?

Ring or email us if you are a recipient of human pituitary hormones or at risk of CJD and would like to become of member of our Network.