Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
 Download Current HansardDownload Current Hansard   

Previous Fragment    Next Fragment
Thursday, 24 March 1994
Page: 2201

Senator KEMP (1.48 p.m.) —I rise to speak about a matter which is of personal concern to not only many members of the Jewish community but also to the wider community. Last Sunday week I attended a video launch at the Beth Weizmann Community Centre in Melbourne. The video had two purposes: first, to escalate a worldwide search for the one person who could save one man's life; and, second, to educate people on the need to join the established data bank of potential bone marrow donors.

  The occasion was sponsored by the Keren Hayeled Committee, an Australian-Jewish volunteer group which assists those who are facing life threatening illnesses and assists where funding is lacking. The video was very well and movingly produced by Harry Mehlman, of Hi-Key Productions. The video has been translated into French and Hebrew and the committee would like to have it translated into other languages. The well-known Melbourne radio personality Neil Mitchell, who has taken a particular interest in the issue of bone marrow transplants, hosted the occasion.

  Each year some 400 young Australians are diagnosed as suffering from a kind of leukaemia that will respond only to a bone marrow transplant. The video told the story of one of these people. It was about a friend of my family, Yehuda Kaplan, who is 32 years old and a father of a 19-month-old daughter.

  Yehuda is a most likeable person. Working as a journalist at the Special Broadcasting Service on the Hebrew program, he was exceedingly popular among his colleagues. He is an ambitious, intelligent, hardworking and courageous young man—by any measure a man who is determined to make a success of his life. He has everything to live for—above all, a devoted wife and daughter.

  At the Sunday briefing to launch the video Mr Albert Haddad, a scientist from the Red Cross tissue typing laboratory, and Dr Max Wolf, set out clearly the nature of the challenge facing Yehuda. A couple of years ago, Yehuda Kaplan was diagnosed as having contracted a rare and dangerous form of lymphoma, a cancer of the lymphatic system. After having intensive chemotherapy and other treatment, including a transplant of his own bone marrow, doctors decided that an unrelated bone marrow transplant was the best hope for Yehuda Kaplan. Matched bone marrow transplants in such cases provide a strong chance of combating the disease.

  In effect, only people with an identical immune system genetic structure to the patient can be considered as possible donors. Yehuda Kaplan is Jewish. Therefore, the chance of finding a fully matched bone marrow donor is likely to be highest within a subgroup of the Jewish community. The most suitable donor for such a transplant is a fully matched brother, sister or other close relative, but only one in three patients are lucky enough to have such a donor. Where there is no compatible family member the search commences to find someone whose immune system can be perfectly matched with the recipient. Yehuda Kaplan must find a perfectly compatible unrelated donor.

  Allen Feiglin, the coordinator for the committee, has called on the Jewish community to volunteer to register with the Australian bone marrow donor registry. There are currently some 57,000 people on the register and about one million worldwide. Allen Feiglin pointed out that the chances of finding an unrelated matched donor in an ideal circumstance, that is, within Yehuda Kaplan's subgroup of mixed Tunisian Sefardi and Polish Ashkenaz ancestry, is about one in 10,000, possibly less.  The Jewish community has been called on to assist in this search for a donor. At present there are only about 1,000 people on the register who are Jewish. The search is continuing not only in Australia but worldwide.

  The video calls on Jewish communities around the world to register with the international bone marrow donor registry. There are a number of issues raised by this video and the case of Yehuda. First, there is the need to greatly expand the bone marrow register, especially in a multicultural society such as Australia. Comparatively few donors are from ethnic communities. This problem must be addressed if the bone marrow registry is to provide an adequate service to the whole Australian community. I congratulate the leadership role that the Keren Hayeled Committee is taking in encouraging members of the Jewish community to take the simple blood test to be registered. This example could be followed by other ethnic communities.

  Second, as is so often the case in medical cases, there is a constant need for additional funds. The federal government is partially funding the testing of donors until the registry reaches an arbitrarily determined quota of 100,000. The process of bone marrow transplantation is becoming more widely used for treating many other forms of cancer, including breast cancer. With this increase in need far beyond the patient numbers of leukaemia and lymphoma, the database of only 100,000 will be most inadequate in providing a good cross section of genetic types.

  The Australian bone marrow registry is a national body with its hub in Sydney at the blood bank. The funding for this work is a joint federal-state arrangement which is to be renewed for the next three years from June 1994. A funding review has just taken place to ascertain the real costs of running the registry. I hope that the government will be able to give a high priority to providing funds to support the important work of the registry. I note that Senator Herron, who is in the chamber, has taken a particular interest in these matters and I know that the remarks I am making would have his strong support.

  Finally, and most vitally, there is the need to assist patients in every way possible. As the Bone Marrow Donor Institute has indicated, only approximately 25 per cent of those needing a transplant will find an Australian donor; the remainder have no option but to search for an overseas donor. Searches of overseas registers can cost an average of $5,000 to $6,000. The costs leading to a bone marrow transplant are very substantial. An international search for a compatible donor now requires the patient to fund any cost beyond the first $5,000. Commencing a few months ago, the initial $5,000 is now provided by the Australian Bone Marrow Donor Registry. Prior to this, the patient had to find all the funding.

  Approximately 90 overseas searches are commenced each year. Inevitably, this will mean the need to raise money by public appeal. In the case of Yehuda Kaplan, the Keren Hayeled committee has paid out $10,000 to date, with a further $5,000 called for this week. Medicare and private insurance do not cover the costs and there are loopholes which leave the patients to fend for themselves. My brother Dr David Kemp, the honourable member for Goldstein, has also taken an interest in the case of Yehuda Kaplan and has written to the health minister, Senator Richardson, about the high costs of searching overseas for compatible donors. Senator Richardson has indicated, among other things, that act of grace payments may be provided in certain circumstances.

  But the problem is that if the search is not successful, or the patient dies prior to transplant, no refund is made for the cost of the search. Families can be left with huge debts and a serious financial problem—apart from their having to cope with the agonising loss of one of their loved ones. Families should not be prevented from searching overseas because they cannot afford the costs involved. The Bone Marrow Donor Institute argues that the federal government should fund all overseas searches to a cut-off point of at least $6,000 per patient, even if the searches do not lead to a transplant. I strongly support this proposal. I understand my colleague Senator Herron has written that he also supports this proposal.

  I have brought this matter to the attention of the Senate today because, as a friend of Yehuda Kaplan, I am anxious that the work of the doctors involved with this case will meet with success. The case of Yehuda Kaplan raises the wider issue of how we can upgrade the activities of the bone marrow registry to ensure that other patients in the future have an increased chance of a successful bone marrow transplant. I am sure all senators will join with me in praying that Yehuda Kaplan will be restored to full health and live a long life.

Sitting suspended from 1.58 to 2.00 p.m.