The MJA this month also brings us Mary Lander’s story: “The fight for a life-saving drug: a personal perspective”.
Mary Lander has a relentlessly-growing meningioma adjacent to her brainstem. This is a non-cancerous tumour of the lining of the brain. She has already suffered a hearing loss, and the tumour involves three facial nerves and her carotid artery. The usual treatments – surgery and radiotherapy – carry dramatic risks. There is another treatment option, a hormone antagonist medication. But her access to this treatment has been hampered by people claiming to be “pro-life” activists.
While doing some research on the subject, I came across references indicating that a high percentage of meningiomas contained progesterone receptors, and there was mention of a drug that could halt the growth of the tumour. The drug was RU486 (mifepristone), the most effective progesterone antagonist available. In overseas clinical studies, it had been successful in some meningioma patients. In my view, a trial of the drug was a better option than the 50% risk of irreparable damage to my vision through surgery. The uncertainty of the long-term prognosis after stereotactic radiotherapy was also unappealing.
Mifepristone has a number of medical uses, including its utility in non-surgical termination of pregnancy. Access to the drug in Australia has been hampered by the now-deposed theocon government who were afraid of women’s access to reproductive medicine. Lander contacted Senator Lyn Allison about her problem, and Allison informed her that the medication could be obtained through a little-known importation loophole scheme, the Special Access Scheme of the Therapeutic Goods Association. Lander’s general practitioner initially obtained a permit to import mifepristone – but then withdrew from being involved in the prescription, citing “medical indemnity insurance issues”:
My GP gave me a copy of the letter which accompanied the permit. It was signed by a “delegate of the Secretary” and dated 8 September 2005. It stated “All parties involved need to recognise the practice may carry medico-legal risk, and there may be implications regarding indemnity”. Why did the TGA wait until they issued a permit before providing that advice? Clearly, no consideration was given to the impact on the patient who had the rug pulled out from under her feet in an instant.
Lander didn’t quit. She became involved in parliamentary and media lobbying and two 2005 Senate Inquiries. From her submission to the Senate Inquiry into services and treatment options for persons with cancer
It is of concern that although TGA approved the use of RU 486 years ago, the Commonwealth Government has not, to date, supported its use as a treatment for the conditions noted above, conducted clinical trials, encouraged or funded any research into this area or established a program whereby people with these medical conditions can obtain access to this medication. I note that only recently a spokesperson for the Minister for Health Tony Abbott “declined to comment any further on the subject of RU 486 (Mifepristone).”
Declined to comment? I would like to whether the Minister for Health, Mr Tony Abbot has any moral or philosophical reasons for denying people with these debilitating, and in some instances life-threatening medical conditions, their ‘Right to Life’?:
Lander also worked with the Feminist Majority Foundation of the USA, who placed a further submission to the Senate Inquiry into the repeal of Ministerial responsibility for approval of RU486. You can read that submission [PDF] and others here at the APH site.
Senators Lyn Allison, Judith Troeth, Fiona Nash and Claire Moore: co-sponsors for mifepristone availability [image source: SMH]
After a cross-party private Member’s Bill (including National Fiona Nash and Liberal Judith Troeth who defied their party lines), and a conscience vote, special Ministerial responsibility for mifepristone was finally removed in 2006. Responsibility was handed over to the Therapeutic Goods Association. In August 2007, approval was granted [PDF] for the use of mifepristone in medical abortion. Tony Abbott resisted all the way, claiming that he was more “accountable” than the TGA – which regulates all other drugs in Australia.
This is what we risk losing by no longer having any Democrats in the Federal parliament. The Dems, particularly Lynn Allison and Natasha Stott-Despoja, have been eloquent, tireless feminist voices. I hope the ALP will step up. Gillard has spoken out for reproductive justice in the past, but without a “minor” party constantly putting the pressure on, can the ALP keep it up?
It took a year and nine months, and an oncologist prepared to take a risk, before Mary Lander could obtain treatment for the tumour slowly growing at the base of her brain. The drug remains unsubsidised; she pays out of pocket for this essential treatment. What are we going to do about it?