Newborn Screening News

 A BUDGET WITH SOME GOOD FOUNDATIONS BUT IT DOESN’T DELIVER FOR ALL AUSTRALIANS   

25 October, 2022

On In their first budget, the Albanese Government has delivered on their election commitments to provide a national expanded and world class newborn bloodspot screening program for Australian babies and make medicines more affordable for some Australians.

Better Access Australia has been advocating for these reforms since 2021 but there are gaps in the announcements tonight.

World Class Newborn Screening in Australia about to be a reality

“Better Access Australia welcomes the Albanese Government’s investment of $39 million to deliver a world-class new newborn bloodspot screening program in Australia commencing in 2022-23.

“This is a huge day for the families that have courageously told their stories and fought so hard to ensure no other families have to endure the diagnostic odyssey of rare disease for babies born in Australia. Because without diagnosis there is no treatment.

Cheaper medicines for many Australians welcomed  but not everyone protected from Australia’s record inflationary pressures

“Tonight’s budget funds the reduction in the cost of PBS medicines for families and individuals earning over $78,000 a year by over 30% from $42.50 to $30.

“But in a cost-of-living budget, concessional patients have been forgotten, with their co-payments scheduled to go up by around 50 cents a script from 1 January. These are the same families and pensioners earning less than $78,000 a year and struggling to meet their rent, mortgage, power bills, food bills, and education expenses.

“Government is getting a windfall from these indexation arrangements, and that needs to stop.

“A freeze on indexation for two years would protect concessional patients and pensioners not just general patients – because every percent increase hurts, and every additional cent is hard to find. 

There’s still time to fix this with the legislation coming before the Senate tomorrow.

Discrimination against some of the most vulnerable patients in the health system continues

“There is still no protection from medicine costs for patients accessing the Opiate Dependency Treatment (ODT) Program in this budget.

“The current general co-pay legislation currently before the Parliament will ironically exacerbate the discrimination against these patients who are paying over $200 a month in out-of-pocket dispensing fess to access their PBS medicines. The only patients on the PBS to be discriminated against in this way.

“In June 2021 the Senate Standing Committee on the Scrutiny of Delegated Legislation found that the ODT Program would likely be found unlawful by the courts if challenged - but still not action by Government to fix this discrimination and injustice.

“One in ten patients accessing the ODT Program identifies as a First Nations person.  Despite the Government’s announcement of more than $133.5 million to prioritise First Nations peoples’ health outcomes, with a total investment of $4.6 billion over 4 years, there continues to be no support for patients accessing the ODT Program.

“Once again tomorrow’s Bill before the Senate is the opportunity for the Parliament to act to protect the rights of some of the most vulnerable in our community

Changes to the NDIS

“Better Access Australia welcomes the Government’s ongoing commitment to the National Disability Insurance Scheme (NDIS) as part of Australia’s critical social infrastructure now and for future generations.

“BAA also welcomes the recently announced Review to rebuild community trust in the NDIS and ensure its sustainability into the future. The anticipated high growth in the NDIS in future years underscores the importance of making sure every dollar is well spent to support people with disability.” 

Please see media release in full here.

LABOR’S COMMITMENT TO A NATIONAL AND EXPANDED NEWBORN SCREENING PROGRAM WILL SAVE TINY LIVES  

April 6, 2022

In introducing a national and expanded newborn screening program for Australia Labor will triple the number of diseases we screen our babies for at birth, making Australia a world leader in newborn health once again.

“In last week’s budget the Government announced funding of potentially curative treatments for Spinal Muscular Atrophy (SMA), but tragically only 1 in 3 babies in Australia will be screened for access to this treatment because only NSW and ACT screen for SMA. 

“And without diagnosis, there simply is no treatment, Better Access Australia Chair Felicity McNeill PSM stated.

“Labor’s commitment to a national and expanded newborn screening program will end the postcode lottery for our babies and end the complete lack of access to screening anywhere in Australia for over 50 diseases we can treat from birth” Ms McNeill added.

Recent national polling showed that 84% of respondents agreed that Australia should screen newborn babies for more diseases and 85% agreeing it should be a national program.

“It’s not just Better Access Australia that has called for action on newborn screening. The community has too, Ms McNeill said

“They have heard Nate’s story and Olympia’s story. They have heard Renee’s story and Joh and Adriana’s stories.  Stories of unnecessarily delayed diagnosis with tragic consequences.  All which could have been prevented with national and expanded newborn screening.

Full details in press release here.

FEDERAL BUDGET FAILS 300,000 BABIES

March 30, 2022

Tuesday’s federal Budget has failed to deliver what Australian babies need most – a contemporary, universal newborn screening program.

“The Government's listing of a gene therapy for Spinal Muscular Atrophy Types 1 and 2 (SMA) should be cause for congratulations, but the sad reality is that two out of three babies that would benefit from this treatment will suffer irreparable damage due to delays in diagnosis because of Australia’s postcode lottery for newborn screening, Better Access Australia Chair Felicity McNeill said.

Australia only screens nationally for 25 diseases at birth. This compares to California that screens for 80 diseases, of which 76 have treatments. “Too often, by the time a baby is diagnosed in Australia, irreparable cognitive or physical deterioration has already occurred, often leading to death. Ms McNeill said

“As Joh, a mum of two has told us ‘I lost my firstborn son because newborn screening in Australia does not currently include Severe Combined Immunodeficiency (SCID), despite the rest of our industrialized neighbours having it. An updated newborn screening would have meant my son would be alive today. Because we knew about it in my second child we were able to save his life and he is a thriving toddler now."

Newborn screening tests that cost a few dollars per baby are saving tiny lives across America, Europe and Asia, but not in Australia.

Better Access Australia called for the program to be made universal, like Australia’s National Immunisation Program, with an immediate review to include the 55 diseases screened for in California and not Australia, with bi-annual reviews thereafter to keep our health system contemporary for our newborns. It was not actioned by the Government.

#EnoughisEnough

Full details in press release here.

A BUDGET THAT PRIORITISES EQUALITY AND AFFORDABILITY OF ACCESS TO OUR HEALTH SYSTEM CAN DELIVER BETTER ACCESS, AUSTRALIA

March 27, 2022

As the federal budget looms, the need for a focus on improving equality of access to health services in Australia remains critical. Individual treatment subsidies are always welcomed but the systemic shortcomings must be addressed now if we are to end the increasing tension of a system of those who have access and those who do not.

Budget 2022-23 is a chance to redefine and future-proof the system, not merely work around. Action is needed this Budget because right now:

• PBS co-payments are tracking towards $50 per script outpacing the cost of living;

• Australia’s babies are some of the least protected in the world for early screening and diagnosis of rare diseases;

• Patients managing opioid addiction are being financially discriminated against by the government despite the protections of the law;

• Average wait times for access to subsidised medicines are over 820 days and growing; and

• Patients are being forced to accept huge out of pocket costs in their access to specialists for primary healthcare, none of which is covered by their private health insurance.

This week’s budget needs to:

1. Introduce a mid-tier co-payment for the PBS based on Family Tax Benefit A, recognising the challenges for individuals, couples and families earning less than $136,000 and freezing indexation growth for 5 years

2. Introduce an expanded and nationally consistent newborn bloodspot screening program following a once-off catch up review, with the new program rolled out by 1 July 2023 based on the funding model for the National Immunisation Program

3. End the government’s requirement for pharmacies to charge out of pocket fees for access to medicines for managing opioid addiction and bring their distribution and subsidy into line with all other PBS medicines by 1 July 2022

4. Establish a #100days from medicine and device registration to subsidy target in Australia to improve access to all therapeutics irrespective of indication or patient population with program administration and contracting based on this new standard

5. Reduce out of pocket costs for patients obliged to see specialists on an annual basis to maintain access to ongoing PBS medicines used in the primary care setting

6. Conduct a consumer-need analysis of private health in Australia recognising the interaction between the public and private health systems and the increasing use of private healthcare outside the hospital setting with no insurance coverage.

Full details in press release here.

THIS YEAR’S BUDGET NEEDS ACTION NOT WORDS AS POLLING SHOWS OVERWHELMING SUPPORT FOR EXPANSION OF NEWBORN SCREENING IN AUSTRALIA - WHATEVER IT COSTS

March 24, 2022

"I lost my son because newborn screening in Australia does not currently include Severe Combined Immunodeficiency (SCID), despite the rest of our industrialized neighbours having it. An updated newborn screening would have meant my son would be alive today. Because we knew about it in my second child we were able to save his life and he is a thriving toddler now" (Joh, mum of two).

As last year's Women's Budget Statement acknowledged, too many children are being lost to perinatal and congenital health conditions.

In this year's Budget Better Access Australia calls for action not words as national poll shows overwhelming support for newborn screening reform.

Many of these deaths could be avoided by bringing Australia's 1990s newborn screening program into the 21st century, including rare diseases that babies across Europe and the United States receive screening for every day.

The national polling shows the Australian community know that the current state of newborn screening in Australia for rare diseases is simply not good enough and it's time to fix this - whatever it costs.

84% of respondents agreed that Australia should screen newborn babies for more diseases than the current 25, with 68% saying whatever it costs to match California's standard of care at 80 diseases.

Families, patients, health professionals and the public agrees, it's time for updated and universal newborn screening now.

Please view the attached media release here.

Full details of the survey are available here.

BETTER ACCESS AUSTRALIA’S PRE-BUDGET SUBMISSION
CALLING FOR GOVERNMENT TO #MINDTHEGAP FOR AUSTRALIAN COMMUNITY

January 31, 2022

Calling for six areas to #MindTheGap, our submission to the government asks for:

1) A national Newborn Bloodspot Screening program to match international best practice of up to 80 diseases.

2) End the government-mandated discrimination by making all medicines that treat opioid dependence, a recognised disability, subject to the PBS co-payment and safety-net provisions as afforded to every other medicine on the PBS.

3) Daily medicine access to be made affordable for families once again by reducing the general PBS co-payment from $42.50 to $20 per script.

4) End the 820-day average wait by making a 100 day policy from TGA approval to subsidised access for medicines and medical devices.

5) End the costs to patients and costs to government of unnecessary annual referrals to specialists for long-term treatment of a chronic disease.

6) Change the emphasis of Private Health Reform to better capture the consumer interest in health coverage expectations rather than an exclusive debate between government and insurers on cost of devices and annual price increases.

These proposals are a combination of targeted reforms for some of the most vulnerable in our community as well as system-wide reforms to benefit the entire population.

Better Access Australia’s 2022-2023 Pre-Budget Submission is available to read here.

INQUIRY REPORT DELIVERS BI-PARTISAN SUPPORT TO END NEWBORN SCREENING POSTCODE LOTTERY TODAY

November 25, 2021

The House of Representatives Standing Committee for Health Aged Care and Sport has tabled its Report on Approval processes for new drugs and novel medical technologies in Australia and in doing so recommended a national solution to fix newborn screening in Australia in 2022.

The Committee Chaired by Mr Trent Zimmerman MP has recommended an expansion and standardisation of the program between all states and territories with ongoing reviews of emerging evidence based on international scientific and medical knowledge every two years. 

Better Access Australia (BAA) has challenged the recent convoluted process for recommending conditions for newborn screening instead calling for a nationally funded program delivered via a one-off catch-up review of existing bloodspot screening testing technology for Australia, and an ongoing commitment to regular reviews of the technology for inclusion in the program.

“Our proposed fix and now this recommendation is small change for governments – around $3 million a year to properly screen and protect every baby in Australia. In the lead-up to an election this needs to be a commitment from the major parties for the health of our babies,” BAA Chair, Ms Felicity McNeill said.

To read the full media release please visit here.

Gene therapy for pre-symptomatic SMA recommendation welcomed but without diagnosis there is no treatment: Nationally updated newborn screening needed now.

October 18, 2021

The Pharmaceutical Advisory Benefits Committee (PBAC) recommended a new genetic therapy for pre-symptomatic Spinal Muscular Atrophy (SMA) patients on Friday.

We welcome this exciting treatment and await its listing by the government.

Along with over half of the country, we also await the announcement of newborn screening for SMA. As well as another 50+ conditions already included internationally that no Australian babies are currently screened for.

Please read our full comment on the need for universal access to diagnosis so breakthrough treatments like the recently recommended genetic therapy for SMA patients can not only be accessed but be effective.

OCTOBER 15: International Pregnancy and Infant Loss Remembrance Day

On October 15, Australia joins the international community in formally recognising International Pregnancy and Infant Loss Remembrance Day.

Better Access Australia wants to recognise both the families we have worked with who have graciously shared stories on infant loss with us and the other families suffering in silence.

“Friday prompts the community to pause and honour these stories and memories. It has been a hard-fought for day but an important step in breaking the silence that has too long perpetuated suffering behind closed doors,” Better Access Australia chair Felicity McNeill said.

Better Access Australia welcomes leadership for change in this space as offered by organisations like SANDS and the Pink Elephants Support Network and the support they provide families.

Please see our media release recognising parents and families as the community honours these stories here.

LITTLE LIVES NEED A LITTLE SUPPORT TOO MINISTER HUNT

30 September 2021

Better Access Australia, as apart of our #30ReasonsWhy campaign, are calling on the Morrison Government to deliver the same quantum of funding and investment in childhood dementia support services and research that the community has welcomed this week for older Australians.

Many families and young Australians already know that the pain of dementia is not just a disease of the old. Yet, the Minister’s recent funding announcement leaves children suffering from dementia out of the picture.

Better Access Australia is calling for action on both newborn screening and childhood dementia. Lysosomal storage disorders (of which we screen no newborns for) can lead to childhood dementia with devastating consequences for patients and families as rates of death from childhood dementia are comparable to childhood cancer. It’s time to expand the conditions we screen for in Australia, including those that lead to childhood dementia.

Let’s get action for both Newborn Screening Awareness Month and Dementia Action Week.

A copy of the media release is available here.

Please sign our change.org petition calling on Australian parliaments to fix newborn screening.

WORLD PATIENT SAFETY DAY - NEWBORN SAFETY STARTS WITH NEWBORN SCREENING

16 September 2021

September 17 is World Patient Safety Day and this year the World Health Organization (WHO) is drawing attention to maternal and newborn safety.

Newborn safety starts with newborn screening.

The Fourth Australian Atlas of Healthcare Variation highlights the need for change in our health system where ‘variation in the use of health services is due to…differences in access to care’.  It notes that such ‘differences in access to care… is unwarranted variation and represents an opportunity for the health system to improve’.   Better Access Australia (BAA) is calling on the federal government to heed the advice of its own advisers and fix newborn screening as part of a bi-partisan election commitment.

821 babies will be born in Australia on World Patient Safety Day. 

If Australia wants newborn safety, we need universal and updated newborn screening. The best armour against rare diseases comes with an iron-clad newborn screening program. The current postcode lottery and decades-old program leaves all Australian babies unprotected. Let’s fix that before the next Healthcare Variation Atlas is issued.

A copy of the media release is available here.

Please sign our change.org petition calling on Australian parliaments to fix newborn screening

MONEY FOR JUST 12 HOURS OF COVID TESTING WOULD SAVE TINY LIVES EACH YEAR

7 August 2021

Better Access Australia has called on bipartisan support ahead of the Federal Election to provide a cast-iron, bipartisan commitment to modernise Australia’s national newborn screening program which was last updated almost 25 years ago.

An opportunity to save children’s lives and prevent heartbreak rests in the hands of Federal politicians who are being urged to update Australia’s newborn screening program to ensure babies with up to 75 rare, yet treatable diseases are diagnosed at birth.

Slow processes and lack of funding mean 300,000 Australia newborns each year miss out on critical screening.

It’s a travesty that a baby born in Tweed Heads can be screened at birth for spinal muscular atrophy, but a baby born on the Gold Coast with this same condition will miss out on early diagnosis. No one should miss out on critical screening and treatment because of the state that they are born in.

A copy of the media release is available here.

 Please sign our change.org petition calling on Australian parliaments to fix newborn screening

2500 CHILDREN LOST EACH YEAR BUT GOVERNMENT DOESN’T CARE

9 June 2021

Better Access Australia calls for immediate reform of Australia’s newborn screening program in response to the government announcing a new process that will add at least three years to any new test being considered, and place the burden to reform the system on parents not government.

The Government’s own 2021-22 Budget recognises that perinatal and congenital conditions are the greatest cause of death for girls under 14. They are also the third greatest cause of death for boys. These statistics mean 2,500 children will die every year and many of these deaths could be prevented with newborn screening.

In the three years of process and bureaucratic obfuscation per disease how many lives will be lost while dozens of other countries protect their kids today?

If ever there was an example of needing to #mindthegap for the #voicesthatcannotbeheard this is it.

A copy of the media release is available here.

NEW DRUGS AND NOVEL MEDICAL TECHNOLOGIES INQUIRY

9 November 2020

Better Access Australia has provided a submission to the “Inquiry into the approval processes for new drugs and novel medical technologies in Australia, with a particular focus on those for the treatment of rare diseases and conditions where there is high unmet clinical need.

Better Access Australia argues:

“Rare disease or chronic disease, people are waiting too long - we need a system led apporach to reform, not a disease led approach to reform. All patients are equal in their need for access.”  

Read Better Access Australia’s submission here.