Senate Standing Committee of the 38th Parliament of Australia on Community Affairs, Current recommendations 30 May 2003

RECOMMENDATIONS The Committee recommends: Chapter 3 Recommendation 1: That the decision not to proceed with an epidemiological study be reconsidered. However, any future study should not be limited only to the Allars recommendation that it be undertaken in the context of monitoring past and possible cases of CJD in the recipient community. Recommendation 2: That the following areas of concern relating to the implementation of the Allars recommendations be addressed: Counselling Ensure that the revised arrangements introduced in October 1996 to assist all recipients and their families who need counselling, are understood and are able to be accessed by all recipients. In particular, that these arrangements are quite distinct from, and alleviate the difficulties associated with, those which previously operated. In addition, that counsellors who may have been providing a service to the satisfaction of particular recipients are not precluded from assistance under the revised arrangements; Epidemiological study That the decision not to conduct an epidemiological study be reconsidered, though any future study should proceed with broader objectives. (This is the subject of a separate recommendation); Tracing recipients That renewed efforts be made to identify and trace remaining approved and unapproved recipients, with due sensitivity in recognition of the time which has elapsed since the Program concluded. (This is also the subject of separate recommendations); Access to information That treatment records and other information requested by recipients be provided directly to them without adopting a restrictive interpretation of s.135A of the National Health Act; Index to Allars Report That an index to the Allars Report be prepared and made readily accessible for all recipients and other interested parties; NPHAC Ensure that NPHAC's processes and procedures are sufficiently open and flexible to enable it to receive views and opinions from all members of the recipient community on issues under consideration by the Council; and that all recipients are kept informed of decisions taken by NPHAC and their outcome; Statement on Human Experimentation That the review of the Statement on Human Experimentation which is not due to be finalised until late 1998 be expedited. To ensure that this review is not delayed, the Committee urges the Minister to finalise the appointment of members to the AHEC as soon as possible; Amendment of s.135A of the National Health Act That s.135A of the National Health Act be amended to ensure that personal information can be disclosed directly to the people about whom the information relates (such as in the case of people who received hormone treatment) and that the Attorney-General's Department broader review of existing secrecy provisions, which includes s.135A, be expedited; and Amendment of s.100 of the National Health Act That the ALRC review which includes consideration of the Allars recommendation to repeal and replace s.100 by a provision which specifies clearly the circumstances where by reason of physical and similar factors associated with the distribution of a pharmaceutical benefit special arrangements' are appropriate, be expedited. Chapter 4 Recommendation 3: That should legal action proceed, the documentation requested from the Commonwealth through a discovery or further and better discovery process be complied with in a more expeditious manner than has been the case to date. In complying with such discovery processes the Commonwealth should refrain from adopting a restrictive interpretation of s.135A of the National Health Act. Recommendation 4: That the process whereby a Department, being a defendant in a legal action taken against the Commonwealth, is placed in the situation of advising on the release (or refusal) of documents to a plaintiff - yet having full access to all documents themselves - is reviewed, so that procedures may be implemented to ensure that the process is transparent and that any conflict of interest, perceived or otherwise, is avoided. Chapter 5 Recommendation 5: That the settlement offer should not preclude a plaintiff making any future claim in relation to: other physical illnesses contracted by recipients which may be proven to be related to long term side effects of HPH treatment; and liability should the transmission of CJD, or other illnesses relating to HPH treatment, to immediate family be proven. Recommendation 6: That, without conceding the likelihood or otherwise of a legal action on psychiatric stress succeeding, in addition to the current settlement offer, the Commonwealth: (a) make an additional allocation of funds to the existing Trust Account and that its purpose be widened. The amount of additional funding should, as a minimum, be equivalent to the cost of defending potential litigation; (b) widen the purpose of the Trust Account to permit one-off payments to be made to recipients who provide evidence that they have suffered psychiatric injury as a result of treatment under the AHPHP. This payment be made on a sliding scale relating to the level of psychiatric injury suffered by the recipient. This payment would be regarded as a form of ex gratia payment and would not constitute any precedent for similar action; (c) consider extending this offer of payment to include recipients who have suffered psychological stress or significant life disturbance; and (d) appoint an independent governing Board to authorise payments from the Trust to replace authorisation by the delegate of the Minister. The Board would be responsible for receiving and assessing applications for recompense. Recommendation 7: That recipients who have already accepted the settlement offer would also be eligible for the additional offer as outlined in Recommendation 6, providing they have evidence of psychiatric injury, psychological stress or significant life disturbance. Recommendation 8: That unapproved recipients, who are formally identified and accepted through the process outlined in Recommendations 2 and 14, be eligible for the settlement arrangements already offered to recipients as well as those outlined in Recommendations 6 and 15. Recommendation 9: That the Commonwealth formally acknowledge: (a) the deficiencies in the operation and oversight of the AHPHP; (b) the experimental nature of aspects of the treatment under the Program; and (c) the anxiety and stress that has been caused to hormone recipients. Chapter 6 Recommendation 10: That the current eligibility guidelines for the provision of legal aid be revised to ensure that cases, particularly test cases, involving issues of public interest such as those raised in APQ's case be eligible to receive legal aid assistance in the future. Recommendation 11: That, in future, the determination of legal aid applications should be made in accordance with the guidelines operating at the time the application was submitted. Thus, any variations to eligibility criteria would only apply to applications submitted after such variations had been introduced. Chapter 7 Recommendation 12: That the Department review all possible tracing methods in an attempt to identify the remaining 190 or so untraced approved recipients. Recommendation 13: That the coding system being developed for lists of recipients distributed to Blood Banks and organ and tissue agencies be completed as a matter of priority. Recommendation 14: That the Department allocate resources to tracing unapproved recipients of human-derived pituitary hormones. Recommendation 15: That once it is established that a person did receive hPG or hGH from the AHPHP, the recipient's status should be of no difference to that of approved recipients. In the event of a dispute between the Department and a person who claims to have received human pituitary derived hormone, the matter should be referred to an independent arbitrator for resolution. Recommendation 16: That the Department put in place protocols to ensure sympathetic early intervention so that information and assistance is provided to a recipient suspected to have contracted CJD as soon as the recipient's condition becomes known, rather than await official confirmation. Recommendation 17: That the Department inform the recipient community of the steps to be taken to make an application to the Department for assistance, including the persons to be contacted and the information required, in the event that it is suspected that a person may have contracted CJD. Recommendation 18: That, in view of the availability of further information (much of which is conflicting in its nature) which may not have been considered by the Allars Inquiry, Professor Margaret Allars be invited to review, with the necessary independent scientific advice, this further information on scientific matters concerning the AHPHP which has become available since the Allars Inquiry reported. If Professor Allars is unavailable, another suitably qualified independent person be invited to undertake the review.