Life-saving Spinal Muscular Atrophy medicine to be made available to Australian babies

Access to a life-saving and life-changing medicine will soon be expanded for Australian children and infants with Spinal Muscular Atrophy (SMA), thanks to a breakthrough medicines listing on the Pharmaceutical Benefits Scheme (PBS).
From 1 December, subsidised access to the life-changing medicine Spinraza® (nusinersen) will be expanded to include children and infants genetically diagnosed with the most severe types of SMA before the onset of symptoms (pre-symptomatic).
SMA is a rare inherited genetic muscle wasting disease characterised by a loss of motor neurons. It causes progressive muscle weakness and wasting, and its most severe forms can cause paralysis and death.
Without the subsidy, families would pay more than $367,000 a year for treatment. From 1 December families and their children will be able to access this life changing medicine for $41 or $6.60 per script with a concession card.
Approximately 18 children and infants, and their families, are expected to benefit from this expanded PBS listing per year.
The expanded listing of Spinraza will allow infants and children, diagnosed with SMA through a genetic test, to start treatment prior to the onset of symptoms.
This means children and infants diagnosed with SMA will be able to commence treatment with this medicine from birth and up to three years earlier, which is so critical to address the impact of this debilitating condition.
The least amount of damage to a child’s motor neurons occurs when they are pre-symptomatic.
The medicine works by slowing progression of the disease. In many cases, it can halt the progression of the disease or significantly improve motor function.
Starting treatment early is critical to halting the impact of this significantly debilitating and life-threatening condition, and preventing irreversible impacts.
Left unaddressed, infants with SMA struggle to meet the simplest of development milestones such as holding their head up, sitting up by themselves, walking and standing.
One in 10,000 live births in Australia are affected by SMA and the disease is the number one genetic cause of death of babies under two in Australia. There is no known cure for SMA.
One in 35 people in Australia unknowingly carry the faulty SMA gene. Being a carrier does not mean you are affected by the condition.
Spinraza is the first and only treatment of its kind to be listed on the PBS for SMA. It was first listed on the PBS in June 2018, and so far over 160 Australians per year are being treated with this medicine.
This PBS listing was recommended by the independent Pharmaceutical Benefits Advisory Committee (PBAC).
Since 2013, the Government has approved more than 2,500 new or amended listings on the PBS. This represents an average of around 30 listings or amendments per month – or one each day – at an overall investment by the Government of $11.8 billion.
The Government’s commitment to ensuring Australians can access affordable medicines when they need them, remains rock solid.
The independent medical experts on the PBAC have been considering an application to expand the listing of Spinraza for the treatment of adults. An update on these deliberations will be provided on 18 December on the PBS website at: https://www.pbs.gov.au/pbs/home.
Further information on SMA can be found at: https://smaaustralia.org.au/wp-content/uploads/SMA_2020_A4_Information_Guide-compressed.pdf

New $4.57 million clinical training facility expands healthcare access in Bega

A new clinical training facility at the Bega Hospital will expand healthcare access for residents across the region, following its official opening today.
The training facility will support medical, nursing, midwifery and allied health students to learn directly from health professionals and pursue their careers in Bega.
Minister for Health, Greg Hunt, said the new training facility will ensure people in Bega and the surrounding region have better access to healthcare in their community, where and when they need it.
“On average, we know Australians living in our regions may experience poorer access to health services, leading to poorer health,” Minister Hunt said.
“The innovative clinical service hub brings providers under one roof, making it easier for people living in Bega to access health services.”
The Australian Government invested $4.57 million to construct the training facility, and an additional $2.95 million to build short-term, residential student accommodation on the hospital grounds in Bega.
Minister for Regional Health, Mark Coulton, said the new facility was another example of the Government’s commitment to providing Australians with world-class healthcare no matter where they live.
“Evidence shows that students who train rurally are more likely to live and work rurally, and this is fundamental to the Government’s approach to building the rural training pipeline for doctors and health professionals,” Minister Coulton said.
“We want to make rural Australia a career destination of choice for young health professionals, and that’s why we are committed to training more medical professionals in the regions to improve access to health services for rural, regional and remote Australians.”
Senator Jim Molan AO DSC attended the official opening of the training facility and said it would not only attract trainees to the region, but also boost the economy and create jobs.
“Local construction projects like this are a great way to grow the local economy, and create and maintain local jobs,” Senator Molan said.
“It’s great these important skills will be retained in Bega and bring about a real improvement in the quality of life of residents and visitors to the region.”
The Government invested a total of $17 million in 2015, under the Health and Hospitals Fund, to build clinical training facilities and accommodation on the hospital grounds at Bega, Cooma and Moruya.
The funding was provided to the University of Canberra and the Australian National University.

RESEARCH SHOWS WHY LABOR’S CHILD CARE PLAN IS NEEDED

Research out today by the Chifley Research Centre provides further evidence of why Labor’s cheaper child care plan is urgently needed for families, educators and the sector.
The report states that early childhood education and care (ECEC) should be seen as a key part of Australia’s social and economic infrastructure.
It notes Australian families contribute 37 per cent of ECEC costs, compared to the OECD average of 18 per cent.
The report states that improving affordability so more children are participating and workforce participation is boosted will generate economic and social benefits.
The analysis finds there are significant gaps in the data and transparency, and makes recommendations to improve our understanding of the sector.
In addition the report stresses the importance of quality in early learning, which has always been a central pillar of Labor’s approach to ECEC.
This report highlights the importance of Labor’s plan to task the ACCC to bring more transparency to the sector and examine the relationship between funding, fees, profits, and educators’ salaries.
Labor’s child care plan will also provide immediate relief to families through our Cheap Child Care for Working Families, which will leave 97 per cent of families using childcare better off.
Labor will also task the Productivity Commission to conduct a comprehensive review of the sector, with the aim to implement a universal 90 per cent subsidy for all families.
There are a chorus of calls from experts across the country to invest in our early education and care system.
Labor, families, business leaders, economists and the sector know affordable, high quality child care is vital to ensure children receive an early education, parents can work when they want, and educators are employed.
The Morrison Government are the only ones who don’t get it.

National Cabinet

The National Cabinet met today for the 31st time to discuss Australia’s COVID-19 response, the Australian COVID-19 Vaccination Policy, the Framework for National Reopening by Christmas, helping Australians prepare to go back to work in a COVID-safe environment and getting the economy moving again.
National Cabinet continues to work together to address issues and find solutions to the health and economic consequences of COVID-19.
The Acting Chief Medical Officer, Professor Paul Kelly, provided an update on the latest epidemiological data and medical advice in relation to COVID-19.
There have been more than 27,600 confirmed cases in Australia and, sadly, 907 people have died. There are now around 80 active cases in Australia. Most notably, National Cabinet noted the significant reduction in community transmission, and that there have been only a small number of cases of community transmission in the last fortnight. More than 9.2 million tests have been undertaken in Australia.
Australia has done well on both the health and economic fronts compared to most countries around the world. National Cabinet noted the significant increase in COVID-19 cases in many countries and the comparative strength of Australia’s effort in addressing COVID compared to most other developed economies. Globally there have been over 52 million cases and sadly over 1.2 million deaths. Today there have been more than 500,000 new cases reported.
National Cabinet endorsed the Australian COVID-19 Vaccination Policy, which sets out the roles and responsibilities of the Commonwealth, states and territories in rolling out COVID-19 vaccination. National Cabinet welcomed the Commonwealth Government’s announcement that Australia had secured access to 134.8 million doses of four leading vaccine candidates.
National Cabinet adopted all recommendations in the National Contact Tracing Review, presented by the Australian Chief Scientist Dr Alan Finkel. While vaccines are being developed, and treatments for COVID-19 are being improved, an important means to bring about a return to normal economic and community activity is rapid testing, contact tracing, isolation and outbreak management. These measures back up the ongoing need for COVID-safe behaviours such as social distancing and good hygiene.
National Cabinet will meet again on Friday 11 December 2020, when the National Federation Reform Council will also meet, with a focus on mental health.
Framework for National Reopening – A COVID Normal Australia
The Commonwealth, New South Wales, Victoria, Queensland, South Australia, Tasmania, the Australian Capital Territory and the Northern Territory agreed to a new ‘Framework for National Reopening Australia by Christmas’ (document attached), subject to local health advice and building on and enhancing the 3-Step Framework for a COVID Safe Australia developed in May 2020.
Western Australia did not agree to the National Framework for Reopening, specifically the domestic border and international arrival proposals.
The Framework provides the Australian community and businesses with a way forward where Australians can live and work in a COVID Normal Australia, recognising that the highly infectious nature of COVID-19 means that it will be present until a COVID-19 vaccine is found.
The Framework underscores the need for continued health vigilance while providing a path to easing the physical and mental burden on Australians.
The Framework establishes an updated Common Operating Picture based on the advice of Australia’s Chief Scientist Dr Alan Finkel AO, with strengthened criteria to ensure that health systems are prepared and detailed information is publicly available on COVID-19 conditions.
The Commonwealth and seven states and territories agreed that reopening by Christmas under the Framework sets a pathway for the removal of domestic border restrictions where it is safe to do so, and with free movement of people and freight consistent with National Cabinet’s strategy of suppression with a goal of no community transmission.
Review of state and territory contact tracing and outbreak management systems
National Cabinet endorsed the review led by Australia’s Chief Scientist Dr Alan Finkel of the contact tracing and outbreak management systems in each state and territory and agreed to adopt all 22 recommendations.
All states and territories were assessed as now having strong contact tracing and outbreak management systems in place. The review provides characteristics of an optimal contact tracing and outbreak management system and recommends that every state and territory regularly stress test their systems.
The review found that patient testing, contact tracing and case management should be fully digital end to end. However while a fully digital system dramatically improves efficiency of contact tracing, it will never replace the need for well-trained contact tracers and expert public health oversight – states and territories should employ a permanent workforce for tracing and outbreak management, with senior public health leadership and should have an additional surge workforce trained and at the ready. Contact tracing must never fall behind. In the event of an outbreak, every effort should be made to go hard and go early.
The review recommended the creation of a digital data exchange so that states and territories can easily access and transfer information about cases and contacts where people have crossed borders. Commonwealth, NSW, Vic and ACT will work to develop a data exchange system.
The review found that states and territories should share new and emerging technologies, such as electronic venue and workplace attendance registration systems, smartphone apps to monitor self-quarantine, new diagnostic tests and wastewater surveillance.
Further details are available at: www.health.gov.au
Australian COVID-19 Vaccine Policy
Australia is well positioned for early access to a breakthrough COVID-19 vaccine in 2021. The Commonwealth Government has secured early access to 134.8 million doses of four leading vaccine candidates worth over $3.2 billion, in addition to up to 25 million vaccines candidates through the global COVAX facility.
Vaccines, should they be deemed safe and effective, are expected to be available by March 2021.
National Cabinet endorsed the Australian COVID-19 Vaccination Policy (the Policy). The Policy sets out how the COVID-19 pandemic vaccination program will be rolled out – one of the biggest exercises in health logistics Australia has ever seen. The policy sets out clear lines of responsibility and clear plans for delivering on these responsibilities will be crucial. The Commonwealth will purchase all vaccines, leading logistics and distribution and will manage significant centralised national oversight and coordination in order to manage continuing complexities and critical unknowns, as well as to track the movement of doses and uptake of vaccination and oversee future surveillance. Immunisation administration will be managed jointly between the Commonwealth and the States and Territories.
The key principles and assumptions for the vaccination program include:

  • Free of charge for all Australian citizens, permanent residents, and most visa-holders
  • Not mandatory, but strongly encouraged
  • To be rolled out on the basis of identified priority populations, linked to delivery schedules, with scope for redirections to outbreak response
  • Centralised Commonwealth oversight, with defined responsibilities for the Australian and State and Territory governments

The initial priority groups for COVID-19 immunisation identified by the Australian Technical Advisory Group on Immunisation (ATAGI) are:

  • People who have an increased risk, relative to others, of becoming very sick or dying from COVID-19 should they contract it.
  • People who are at increased risk of exposure and hence being infected with and transmitting SARS-CoV-2 to others at risk of severe disease or are in a setting with high transmission potential.
  • People working in services critical to the functioning of our society, including select essential services staff and people working in supply and distribution of essential goods and services.

Further details are available at: www.health.gov.au
Australians returning home
National Cabinet agreed to continue to prioritise the return of Australians.
Since the beginning of the pandemic over 414,000 Australians have returned to Australia on commercial flights, and 69 flights facilitated by the Department fo Foreign Affairs and Trade.
Since 18 September 2020, around 10,900 Australians registered with the Department of Foreign Affairs and Trade have returned to Australia. However, since 18 September 2020 the list of registered Australians has grown from 26,200 to 35,637. Between now and Christmas, we expect to bring an additional 27,000 Australians home. Further places will become available once Melbourne Airport reopens to international arrivals.
National Cabinet agreed international air passenger caps have played an important role in ensuring jurisdictions’ quarantine systems can protect Australians at home. The Commonwealth will be extending the international air passenger caps till 31 January 2020 for Sydney, Brisbane, Perth and Adelaide, with further increases to be made if and when additional quarantine places become available.
National Cabinet welcomed progress on plans by the Victorian Premier to reopen Melbourne to international travellers.
The Commonwealth and Northern Territory Government are finalising arrangements to increase capacity at the Howard Springs Quarantine Facility. Both the Australian Capital Territory and Tasmanian Governments have agreed to facilitate the return of 360 and 450 Australians respectively before Christmas.
Leaders agreed that, wherever possible, existing surge capacity for quarantine will remain in place for vulnerable Australians. The Queensland Government agreed to continue to surge above their weekly 1,000 passenger cap, and will now allow an additional 300 vulnerable Australians per week.
National Cabinet agreed a range of measures to support efforts to maximise the use of available seats to further boost the number of Australians who can return before Christmas. Going forward, caps and other arrangements will be implemented on a weekly basis and, in consultation with the relevant jurisdiction, an overallocation by up to 10 per cent above caps will be allowed.
The Commonwealth will continue to work with states and territories to facilitate the arrival of additional facilitated flights, carrying registered Australians and prioritising vulnerable Australians.

Jurisdiction Arrangements
Australian Capital Territory 360 passengers over two flights before Christmas
New South Wales a weekly cap of 3,000 passengers into Sydney
Northern Territory finalising arrangements with the Commonwealth to increase capacity at Howard Springs Quarantine Facility from the current 500 per fortnight
South Australia a weekly cap of 600 passengers into Adelaide
Queensland a weekly cap of 1,000 passengers into Brisbane, and increased surge efforts to 300 vulnerable Australians per week
Tasmania 450 Australians over three flights before Christmas
Western Australia a weekly cap of 1,025 passengers into Perth

International Students
The National Cabinet agreed to continue prioritising returning Australians. Quarantine space must be prioritised to Australians, including vulnerable Australians, seeking to return home. While we look forward to welcoming international students back and will continue planning for their return, we cannot progress the broader entry of international students at this time.
Royal Commission into National Natural Disaster Arrangements
The National Cabinet noted the Commonwealth Government’s proposed response to the Royal Commissioner into National Natural Disaster Arrangements and agreed to work collaboratively on the recommendations that require joint government action.
The National Cabinet further agreed that a National Emergency Management Ministers Meeting will be initially responsible for driving and coordinating implementation of the Royal Commission’s recommendations, including design of ongoing governance mechanisms. This Meeting will work closely with other relevant Ministers who have responsibilities relevant to recommendations of the Royal Commission.
The Commonwealth’s response to the Royal Commission can be found at: https://www.pmc.gov.au/resource-centre/pmc/national-approach-national-disasters
National Cabinet Infrastructure and Transport Reform Committee
The National Cabinet agreed to establish the Infrastructure and Transport National Cabinet Reform Committee (the Committee), which will be chaired by the Commonwealth Minister for Infrastructure, Transport and Regional Development the Hon Michael McCormack MP.
The National Cabinet tasked the Committee with coordinating efforts to deliver infrastructure investment stimulus between jurisdictions, and presenting opportunities to improve freight transport connectivity across all transport modes by mid-2021. The National Cabinet also tasked the Committee with developing proposals to streamline planning and approval processes at all levels of government to support faster and more efficient delivery of infrastructure projects.
Automatic Mutual Recognition of Occupational Licences
The National Cabinet agreed in principle to establish an Intergovernmental Agreement on Automatic Mutual Recognition of Occupational Licences, with that agreement to be signed by the end of the year following further work by the Council of Federal Financial Relations. To give effect to this, draft legislation to amend the Commonwealth Mutual Recognition Act 1992 will be released by the end of the year to facilitate automatic mutual recognition commencing by 1 July 2021.

Senate Inquiry into Media Diversity established

The Greens have successfully established an inquiry into media diversity with the support of the Senate today.
Greens Spokesperson for Media and Communications Senator Sarah Hanson-Young who is chair of the Environment and Communications References Committee which will conduct the inquiry said:
“The Senate has today agreed to the Greens motion to establish an inquiry into media diversity in this country.
“It’s clear from the half a million signatures on the record-breaking petition for a Royal Commission into media diversity that Australians are very concerned about the concentration of media ownership and the power and political influence of Murdoch. As a Parliament it was right that we acted on those concerns.
“The media landscape in Australia has been changing rapidly. We need to ensure we have a strong and independent public interest news industry to support our democracy.
“We are losing the diversity of media voices across the country and access to news and public interest journalism in some regions altogether. The loss of media outlets and the increasing pressure faced by small and independent publishers is bad for our democracy and should be given the attention it deserves.
“The dominance of Facebook and Google has been ever increasing and this inquiry will also provide an opportunity for a proper consideration of how that is impacting media diversity.
“The US election has highlighted the need for truth in journalism and the need to call out unsubstantiated and false claims. Before we head into another election period in Australia we can now take a proper look at the state of media diversity here and help protect a pillar of our democracy.”
The inquiry will open for public submissions soon with details available on the Environment and Communications Committee website.

Greens Call for Parliamentary Standards

Greens Senator Larissa Waters moved to bring on her Parliamentary Standards Bill this morning to address Parliament’s appalling ineffectual complaints process for staff suffering workplace bullying and harassment.
The move follows the Morrison Government’s refusal to even acknowledge there is a problem, following Monday’s Four Corners investigation into sexual harassment within the Liberal Party.
Senator Waters, Greens Leader in the Senate and Spokesperson on Women, said:
“This is Parliament’s Me Too moment.
“The existing complaints process is little known and far too weak, with no consequences for MPs or MOPS Act staff found to have breached the code.
“Instead of trying to silence the ABC and downplaying his ministers’ behaviour, the Prime Minister must act decisively to fix Parliament’s reporting processes so women feel encouraged to come forward, without fear of reprisal.
“The only people in Parliament facing repercussions for workplace harassment and bullying in this place are the complainants. We need to change that.
“Morrison is more interested in saving face than taking action, so the Greens have stepped up to ensure Parliament is a safe and respectful workplace for all women.
“The Greens Parliamentary Standards Bill would create an independent parliamentary standards commissioner to investigate complaints, and, where complaints are upheld, censure, fine, or suspend offending MPs from Parliament.
“We want women to know that if they come forward with allegations of workplace harassment and bullying here, they will be heard and there will be consequences.
“We are bringing this bill forward so the Prime Minister cannot continue to sweep these issues under the carpet.”

GREENS UPDATE MP GUIDELINES

The Australian Greens Party Room has agreed to strengthen rules for Senators and MPs, making explicit a ban on sexual relations between any Federal Greens MPs and any Federal Greens staff members.
The Australian Greens and the Party Room already had very strong and extensive policies on sexual harassment and bullying and this update further strengthens those rules. These rules conform to community expectations and what is in place in workplaces around the country.
The rules go further than other parties, in that they apply to all MPs (not just Ministers or Shadow Ministers) and apply to staff of other Greens MPs (not just the MP’s own staff).
Sanctions for any breach of the rules would be determined by the Party Room, and could include loss of leadership roles, portfolios, or committee membership.
The Greens have called on other parties to update their rules so that there is uniformity for all staff working for elected representatives in Parliament.
“Women have a right to a safe workplace. The Greens have always been leaders in Australian politics on issues of workplace relations, integrity and Parliamentary standards, and this further strengthening of our rules continues our commitment to safe workplaces,” said Greens Leader, Adam Bandt.
“After the 4 Corners report on Monday night, the Prime Minister’s response has been to blame others, refuse to investigate and fail to put in place a clear way for people to raise complaints without fear of reprisal. It’s not good enough. We need to lift standards across the board so that everyone working in Parliament feels safe.”

Government's Sham ICAC Has No Friends

The Greens echo the Australian Federal Police Association’s description of the Morrison Government’s sham integrity commission as nothing more than a “protection racket” for government MPs.
Greens Leader in the Senate and Spokesperson on Democracy, Senator Larissa Waters, said:
“The Morrison Government has designed its sham integrity commission to shield their mates from proper scrutiny. It wants one rule for its politicians, and another for everyone else.
“The Government’s CIC bill has no friends. Earlier this week, the Senate made clear it thought the bill is too weak by supporting a Greens motion demanding an independent corruption watchdog with teeth.
“My bill for a federal corruption watchdog passed the Senate a year ago. If Morrison brought on my bill for debate in the House, we could have an effective ICAC by Christmas.”

Uni Enrolment Slump Reveals Gendered Downturn

The Greens have responded to new ABS data showing an alarming drop in women studying at university in 2020 as compared to 2019.
Senator Mehreen Faruqi, Greens spokesperson for Education, said:
“I’ve said from the very start that women have borne the brunt of the impacts of Covid-19.
“These numbers challenge the assumption that people will enrol to study when there’s an economic downturn. Women are still doing much of the unpaid care work during these hard times. They are the ones now having to give up the opportunity to go to uni.
“The government’s plan to hike up university fees and cut funding for courses with a high proportion of women enrolled will be another barrier to university education.
“With the Covid recession rolling on, the government should be making it easier for women to go to uni, not hiking up fees and cutting course funding,” she said.
Senator Larissa Waters, Greens spokesperson for Women, said:
“The Morrison Government never thinks twice about how its policies will disproportionately disadvantage women and widen the gender pay gap, and the increase in uni fees is a perfect example.
“You don’t find inequities if you don’t look for them, and that’s why this Government needs more women in Cabinet and a Women’s Budget Impact Statement to reveal the gendered impacts of their decisions.”

REMEMBRANCE DAY

Remembrance Day has come to signify a moment where, as a nation, we pause collectively to reflect on past conflicts.
Today at 11:00am, we stop for one minute’s silence in honour of those who have served- some two million men and women, who have taken up our nation’s uniform.
We honour all Australians who have served and reflect on the sacrifice they made to keep our nation safe, including the more than 102,000 defence personnel who have tragically died during, or as a result of, wars, conflicts and peacekeeping operations.
Since the guns first fell silent on the Western Front, Armistice Day, as it was formerly known, has gained special significance in the post-war years.
Today, on Remembrance Day we honour and pay tribute to our current and former service personnel and their families who have sacrificed so much.