Bill Speech: Access to Medicinal Cannabis Bill 2015

Ms SPENCE (Yuroke) — I am very pleased to speak on the Access to Medicinal Cannabis Bill 2015. As we have heard from many speakers today, the bill implements our election commitment to legalise access to locally manufactured medicinal cannabis products for use in exceptional circumstances.

We have heard that from 2017 the first patient group, children with severe epilepsy, will gain access to this product, and it is important to understand that there will be a phased approach to patient eligibility. It simply will not be possible for all patients identified as potentially benefiting from the use of medicinal cannabis to access it on day one. But what the parents of these patients, for which other treatments have been ineffective, will have is hope, and that is something that many patients have given up. The bill reinstates some hope that this treatment may be available to potentially alleviate the often debilitating symptoms of their condition where other treatments have been ineffective.

The bill will enable the manufacture of quality-controlled medicinal cannabis products, license cultivators and manufacturers of medicinal cannabis products, authorise medical practitioners to treat patients as part of the medicinal cannabis scheme and authorise medical practitioners to treat patients on a case-by-case basis when those patients have exceptional circumstances that are outside of specified conditions and symptoms.

It is this last point that I want to focus on today, and in doing so I want to share with this place the story of my constituent, Caitlin Caruso. Caitlin has a very rare disease. It is Ataxia-telangiectasia, or A-T, which is estimated to occur in less than 1 in 40 000 births. A-T is an incurable, degenerative disease that affects a variety of body systems, including the immune system and the nervous system. Degeneration of muscle control begins in early childhood, usually before the age of five years, and children typically develop difficulty with walking, balancing, and coordination. As a result, movement problems typically mean that wheelchair assistance is needed by adolescence. The symptoms of A-T are quite varied and not consistent between individual cases. Further research is required to gain a better understanding of this disease.

Caitlin displayed symptoms of A-T from a very early age. However, she was initially misdiagnosed at 18 months with cerebral palsy. Later when Caitlin was in grade 1 at the age of seven years and her symptoms had widened and worsened over time, the correct diagnosis was made. Caitlin is now 18 and requires a wheelchair for mobility. She started her education in a mainstream school but then went to specialist schools and she graduated with the Victorian certificate of applied learning.

From a very early age Caitlin was unsteady and found it difficult to balance, but she loved to dance. She is no longer able to do that. She cannot walk or dance now because the systems are too far progressed to allow that to happen and the treatment available today provides her with no relief. It is the lack of mobility that is the most debilitating aspect of this disease for Caitlin. Caitlin simply wants to do the things that the rest of us take for granted, like simply getting a drink from the kitchen, but she is not able to do that without her wheelchair.

On 6 October last year this government announced that it would legalise access to locally manufactured medicinal cannabis products for use in exceptional circumstances from 2017. This announcement was widely reported in the media, and before that day’s end Caitlin’s mum, Pam, had contacted me to get further information and to find out how this treatment could possibly benefit Caitlin. As with many rare diseases, those affected and their families tend to form networks where experiences and support are shared. Pam had seen videos of children with A-T in the United States who had benefited greatly from medicinal cannabis treatment, particularly in regard to improved independent mobility. Pam had hoped that this treatment could also benefit Caitlin, and I too hope that this treatment will one day benefit Caitlin.

Pam understands that access to medicinal cannabis will not be immediate, and there is still a way to go as patient eligibility is determined. However, this bring me to the very important provision in the bill which provides hope for Caitlin and her family as well as the many others who may benefit from this treatment. The bill provides that patients will be able to access medicinal cannabis if they meet the eligibility criteria and are authorised by their medical practitioner. Initially, as we know, this will be children with severe epilepsy. However, the bill allows for the development of regulations to define other eligible patient groups.

Patient eligibility will be considered by the Independent Medical Advisory Committee and future changes to regulations are to be made based on best available medical research and following consideration of the committee’s advice. As a starting point, the Independent Medical Advisory Committee may consider the other patient groups that were recommended in the Victorian Law Reform Commission’s Medicinal Cannabis report. These include patients with severe symptoms associated with epilepsy, including adults; multiple sclerosis; cancer; HIV/AIDS; and chronic pain. The bill also allows medical practitioners to apply for a patient medicinal cannabis authorisation for patients whose circumstances are outside of specified conditions and symptoms and who do not otherwise meet the eligibility criteria. These applications will be considered on a case-by-case basis. It is through this process that it may be possible for Caitlin and patients in circumstances such as hers, which are outside the specified conditions and symptoms but where current treatments are ineffective, to have access to this treatment.

This is an important bill. It provides a comprehensive scheme to provide eligible patients access to a product that is safe, that is legal and that is reliable. It will have a profound impact on patients, on carers and on families. Its reach will continue to grow as trials are undertaken and eligible patients are identified. I am very proud that this government has taken such a strong lead to legalise medicinal cannabis, and I am sure that the other states will follow. I am glad that Cooper Wallace’s parents are in the gallery today. I commend the bill to the house.