The latest from Better Access Australia
Better Access Australia welcomes bipartisan first steps in medicine affordability, but more is needed to make it a generational and equitable reform
1 May 2022
Both major parties are committing to reduce the PBS co-payment for individuals and families earning over $67K per year from 1 January 2023.
“Better Access Australia welcomes the recognition by the major parties that we need to bring the day-to-day affordability of medicines back within reach of working Australians. Felicity McNeill chair, Better Access Australia said.
“Yesterday the Prime Minister committed to reducing the general co-payment for medicines on the Pharmaceutical Benefits Scheme (PBS) by $10 to $32.50, and today Mr Albanese has announced the general co-payment will be reduced by $12.50 to $30.00 if Labor is elected to Government.
“These are incredibly important first steps in making day to day healthcare and medicines more affordable for the community.
“Reducing the general co-payment is an important first step, but with inflation at 5.1% both these commitments will be chewed up within two years like the 2019 safety net measure.
“It’s why we need a second, third, fourth and fifth step if we are to achieve the systematic reform that makes medicines affordable again over the next decade. Ms McNeill said
“In welcoming these announcements Better Access Australia maintains its call for:
a permanent mid-tier co-payment of $20 for individuals and families earning under the Family Tax Benefit A income thresholds,
automated safety nets to make sure high medicine users get the full protection of the system like they do on the MBS,
a freeze on indexation for five years on both co-pays and safety nets to stop inflation devaluing the commitments made over the past 24 hours, and
ensuring the PBS co-pays and safety net apply to all PBS listed medicines and end the discrimination against specific diseases on the PBS.
“In combination with the policies announced by the Coalition and Labor, BAA is asking for reform that will ensure the principle of affordable access to medicines under the PBS can transcend economic volatility.”
Please see media release in full here.
Election 2022: Six Health and Disability Services Scheme Reforms
27 April 2022
Better Access Australia has written to all parties and independent candidates seeking commitments to six reforms and actions of our health and disability services schemes.
As a not for profit focused on system level reform, we are focused on the gaps in access and gaps in affordability of our system and delivering reforms that help patients, consumers, government and industry.
1. #MindtheGap in Newborn Screening
with a nationally funded newborn screening program for 80 rare diseases
2. #MindtheGap in keeping healthcare affordable for patients
with a mid-tier PBS co-pay of $20 and freeze indexation increases for five years
3. #MindtheGap in time to health technology access
with a #100day from TGA registration to subsidised system access KPI
4. #MindtheGap in the affordability of private healthcare
with a review that addresses consumer needs and out of pocket costs
5. #MindtheGap in government mandated discrimination
by ensuring all PBS medicines are protected by co-pays and safety net
6. #MindtheGap in access between health, NDIS and employment support
by improving assessment processes and equality of access
Read the quick link (the two-pager) to our six asks, and if you want more detail on why these reforms are needed and how they can delivered click here.
We will publish a ready reckoner of the responses and commitments of all parties and individuals in response to our requests to keep our work transparent and the community informed.
Newborn screening is already a federal election commitment from the Labor party, and PBS Co-payment reforms have been committed to by the Coalition, with Labor announcing there will be policy reforms in this area too.
Read our letter to Mr Adam Bandt and Senator Steele-John of the Australia Greens here.
Read our letter to the Independents here.
Read our letter to The Hon Mark Butler, Shadow Minister for Health and Aging here.
APRIL 15: International Pompe Day – a chance for all political parties to save lives
14 April, 2022
On April 15, International Pompe Day, families across Australia will be celebrating their loved ones living with Pompe disease and remembering those they have tragically lost too soon.
Pompe disease is a devastating lysosomal storage disorder that causes physical development issues for newborns. Newborn screening for Pompe Disease has been routine in Taiwan and much of the United States for years, with early diagnosis leading to timely treatment and healthier babies.
Better Access Australia acknowledge these families, particularly Renee and Jenna, who have fought publicly for a national newborn screening program.
It is through the courage of those who stand up and share their stories that change occurs as evidenced by Labor’s announcement of a national and expanded newborn screening program as part of its increasing investment in Medicare commitments this election.
Despite listed treatments for eleven years in Australia, newborns with the infantile-onset form of Pompe disease can’t reverse the damage that is done to their bodies. For children, that delay is usually fatal. For adults it might mean losing the ability to walk by the time diagnosis and treatments are made available. Enough is enough.
“Today, five babies will be born who wont be diagnosed and commence immediate treatment because of Australia’s inadequate 1990s screening program. One could be a Pompe baby. Ms McNeill said.
“last week, Labor committed to making newborn screening a national program and updating the conditions screened for from 25 to 80, matching international best practice, if they are elected.
“For the Pompe community in Australia it means there is finally hope that Australia will match countries like Taiwan, the United States, Japan and Italy where babies receive screening at birth for this devastating, degenerative disease.
“Better Access Australia calls on the Liberal, Nationals and Greens parties to join Labor in protecting Australia’s newborns by making this reform a truly bipartisan commitment this election.
“In a rural setting screening is twice as important with the average time to diagnosis for a baby born in Dubbo or Wodonga or Woomera being 180 days for a diagnosis versus 90 in Sydney or Melbourne. National and expanded newborn screening would reduce that diagnosis to a matter of days for all babies born in Australia – no matter where they live.
“We only hope that on International Pompe Day 2023, the 821 babies that will be born in Australia on 15 April 2023 will be screened for Pompe disease and a further 50+ conditions that are included in international newborn bloodspot screening programs,” Ms McNeill concluded.
“There’s fundraising for Pompe today at the Daily Dose Café and Winebar in Maryborough (Victoria) today (THURSDAY) for Pompe. It’s hosted by Nate’s mum Jenna. Make your way there – buy a coffee, talk to others in the community about Pompe disease, talk to each other about how Australia could be a world leader in newborn care again.
“Go say thank you to Jenna.”
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.
FEDERAL BUDGET IGNORES THE MAJORITY OF AUSTRALIANS STRUGGLING TO AFFORD THEIR MEDICINES
March 29, 2022
The Government’s announcement of a repeat of its 2019 election PBS safety net measure shows its lack of understanding of the true cost of medicines.
Families earning no more than $70,000 a year face the ongoing choice of food on the table or medicines for themselves or their kids.
BAA welcomes reducing safety net thresholds for concessional patients, but tonight’s measures will do nothing to protect the majority of Australians from the increasing weekly unaffordability of medicines.
Waiting to fill 34 scripts for medicine cost relief is not a luxury most families can afford.
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:
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
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
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
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
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
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.
HALTING REVIEW OF NATIONAL MEDICINES POLICY WON’T FIX INHERENT FLAWS
BAA CALLS FOR RESET FOR GENUINE REVIEW
March 24, 2022
The Government has decided to hold off the finalisation of the NMP Review until after the federal election.
BAA is sure that the 150 plus submission makers to the Review and in particular the individual patients and patient groups who have expressed so much concern about this process and the draft policy, will be greatly relieved that there is still a chance to comprehensively review the policy and not merely undertake a tick and flick ‘refresh’.
In welcoming this advice from the Minister to one stakeholder, we note this decision could have and should have been taken a lot earlier given the impost and stress it placed on many in the community trying to meet the response times over the past six months. The important thing is that the decision to stop the Review has been taken. The challenge now is where to from here? This cannot simply be a delay - it must mark change.
For Better Access Australia and the individuals and groups who published their submissions on our website, gave us input to the redrafting of the NMP, our work does not stop here.
We will be releasing our draft of the NMP for anyone to use as a new starting point as they see fit. It will be based on the input of patients, the community, clinicians and industry. We are committed to producing a document that reflects the community’s input.
BAA has written to the Prime Minister asking for this Review to be recommenced from a first principles basis after the election with an independent Chair, new terms of reference reflecting the community’s feedback, and a proper timetable for genuine policy development. Importantly, we will be asking for full transparency – no hidden sub-reports - just a community and patient led policy development process.
We are all acutely aware that the principles in the NMP will permeate and dictate not just medicines and vaccines access but as we increasingly see, access to diagnostics, therapeutics and devices. Maybe now we can give everyone involved in the process the opportunity to focus on that stewardship role.
Read our letter to the Prime Minister in full 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.
ON WORLD RARE DISEASE DAY
PROOF THAT #100DAYS FROM DRUG REGISTRATION TO PBS SUBSIDY IS POSSIBLE
February 28, 2022
On Friday 25 February the PBAC released advice that it had found the drug molnupiravir used to treat COVID infection to be clinically effective and cost effective for listing on the PBS in the community setting.
In doing so they ensure pharmacists will be fairly remunerated for dispensing, and patients can purchase the product with the full protections of PBS co-payments and safety nets.
“This record assessment process for recommending and subsidising a medicine should be welcomed by everyone in Australia waiting for access to a medicine on the PBS” BAA Chair Felicity McNeill said.
“Today the PBAC and Department have shown that their HTA process can take a medicine provisionally listed on the Australian Registry of Therapeutic Goods (ARTG) on a limited dossier and assess it for cost-effectiveness under the National Health Act and find it suitable to list and deliver into a patient’s hands with a PBS co-payment in less than 40 days. It truly is a miracle.”
For patients – this is the window of opportunity we have all been waiting for. But only if industry and community hold the system to account for its decisions.
“When listings on the PBS are taking on average 820 days post ARTG registration, this is the innovation we have all been waiting for.
Better Access Australia first commenced advocating for a #100days from ARTG to subsidy process as part of its submission to the Zimmerman Inquiry, and again called for this reform as part of our 2022-23 pre-budget submission.
“28 February is World Rare Disease Day. We can only hope that the waiting times for breakthrough treatments for diseases such as cystic fibrosis, spinal muscular atrophy, Pompe, X-linked hypophosphataemia (XLH) and Leber congenital amaurosis might now be given this same expeditated process to make #100days a reality,” Ms McNeill said.
Read media release in full here.
IS THE GOVERNMENT ABOUT TO TAKE MEDICINES OFF THE PBS
BAA CALLS FOR A HALT TO THE NMP REVIEW AND DO THIS OURSELVES
February 17, 2022
Better Access Australia has written to the Prime Minister asking for urgent clarification on whether the Government is pursuing a policy of removing medicines from the PBS as part of its new National Medicines Policy (NMP) and to call a halt to the Review until after the election.
In an effort to rush this Review for completion patient and community input has been largely set aside.
More concerning is the inclusion of statements within the draft policy emphasising disinvestment in medicines, budget constraints and limiting patient access – a first for the national medicines policy, and at odds with every other health policy or strategy on the Department of Health’s website currently framing our leader’s priority of investment in health decisions.
Better Access Australia has commenced redrafting the NMP to reflect the feedback from the 120 publicly available submissions and is calling on others in the community to be part of the redrafting process.
Read the press release in full here.
Read BAA’s letter to the Prime Minister here.
BAA ASKS FOR EXTENSION ON RUSHED PERIOD OF STAKEHOLDER COMMENT ON NATIONAL MEDICINES POLICY DRAFT
February 03, 2022
Better Access Australia (BAA) encourages patient groups and individuals to ask for an extension on current NMP consultation process.
BAA has labelled the two-week consultation process on the draft National Medicines Policy document released today as farcical, and contemptuous of the effort over 150 stakeholders have already invested in the process.
BAA has requested the minister for health and the shadow minister for health support an extension to the two-week consultation period as a show of bipartisan support for the Australian community and this important public health policy.
This review had bipartisan support in the 2019 election period following election commitment requests by Medicines Australia for the review to be undertaken. We hope that continued joint commitment to medicines access in Australia can be put towards ending this unnecessary rush on a policy, inconsistent with the way the health system engages on any other public health consultation process.
We will also be drawing attention to the community that the period for reflection and comment is now open so that all who want to have their voice heard are made aware.
Full media release available here.
To read our letter to the Minister for Health in full, please click here (and for his response, please click here).
To read our letter to the Shadow Minister for Health in full, please click here.
PRIVATE HEALTH INSURANCE MODEL STUCK IN THE 20TH CENTURY
BAA CALLS FOR A RETHINK TO REFLECT REALITY OF TODAY’S SYSTEM
February 03, 2022
Better Access Australia (BAA) is calling on the federal government to #MindTheGap in the affordability of healthcare as part of its 2022-23 Budget.
One of the six measures BAA have asked for in its 2022-23 Pre-Budget Submission focusses on Australia's outdated private health insurance (PHI) model.
BAA is calling on the Government to conduct a consumer-needs analysis of PHI that sets aside current regulatory limitations as the basis for the consultation to facilitate co-design of a better integrated public and private health system for consumers and the affordability of healthcare for the community, insurers and governments.
“COVID-19 has shown that Australia’s health system relies heavily on the use of the private health system as well as the public health system to ensure timely and affordable access to diagnostics and treatment when patients need it”, Better Access Australia Director David Mackay said.
The scope of PHI has not been extending to the primary care setting, so the gap between what the 13.6M self-insured Australians are covered for, versus the out-of-pocket health costs they are continually having to meet is increasing year-on-year.
“The time for a genuine discussion on the need to change what PHI covers to support the delivery of Australia’s ‘universal health system’ is now”.
Full media release available here.
INCREASING COSTS OF MEDICINES UNMANAGEABLE
BAA CALLS FOR A REDUCED PBS CO-PAY AS PART OF 2022-23 BUDGET
February 02, 2022
Better Access Australia (BAA) is calling on the federal government to #MindTheGap in the affordability of healthcare as part of its 2022-23 Budget.
“Right now, Australians are paying some of the highest co-payments for subsidised medicines in the world. Only the US, Canada and Switzerland charge patients more,” Better Access Australia Chair Felicity McNeill said.
Better Access Australia is calling for a reduction in the general PBS co-payment from $42.50 to $20 per script for some patients and freezing indexation on PBS co-pays and safety nets as Australians face the challenge of growing inflation and wage stagnation.
“With 40.4% of people aged 15-44 managing a chronic health condition, too many in the community are facing high costs to manage their health.
“Waiting to fill 36 scripts before your medicines are made affordable is not a luxury of time and luxury of cost many can afford. No individual, parent or child should be going without their medicines because they’re managing their monthly household budget and waiting for their safety net to bring the cost of their medicines down.
“Non-compliance with medicines for chronic conditions risks acute and longer-term complications. It’s not good for the health of the community or the health of our health system.
To read media release in full click 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.
TOO LITTLE, TOO LATE
NMP REVIEW TEAM BACKFLIPS AND RELEASES SUBMISSIONS TO PUBLIC
January 24, 2022
Following close to three months of pressure to make them available to the public, 120 of the 156 submissions made to the National Medicines Policy (NMP) Review have finally been published online on the Department of Health’s website.
Better Access Australia (BAA) had previously launched a webpage, #voicesthatcannotbeheard, to host and link to submissions in one place whilst the public waited for the Department to make them available.
To read BAA’s full response, as published in PharmaInFocus please click here.
*Permission to publish this article was sought and received from PharmaInFocus prior to uploading article.
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.
CONCERNS FOR CONSEQUENCES OF BILL
INCREASING MEDICINES COSTS FOR COMMUNITY AND PATIENTS
November 24, 2021
A bill before parliament will see the price of medicines increase if it passes.
Better Access Australia supports proper parliamentary scrutiny of the National Health (PBS Enhancements) Bill. This Bill is the result of 15 months of negotiations between industry and the government and specifically excluded the community and patients from consultation on measures that will impact their hip pockets and timely access to medicines.
We support many of the measures in the Bill but the community must be given an opportunity to understand the intended and untended consequences of this Bill including Government’s intention to increase the price of many medicines by at least 50 cents and as much as $1.50.
1 in 3 scripts on the PBS is fully paid for out of a families’ budget NOT the governments. Families need the chance to assess what this Bill means for the affordability of medicines for them.
An article published in BioPharmaDispatch exploring these concerns can be read here.
*Permission to publish this article was sought and received from BioPharmaDispatch prior to uploading article.
ACTIONS SPEAK LOUDER THAN WORDS
NATIONAL MEDICINES POLICY REVIEW CALLS FOR TRANSPARENCY BUT DOES NOT PROVIDE IT
November 3, 2021
Better Access Australia (BAA) has established a webpage with links to publicly available submissions made to the National Medicines Policy review.
The webpage is in response to confirmation the Department of Health will not make the submissions publicly available.
In a review process that asks the community to comment on whether accountability and transparency should be a pillar of any future medicines access policy, the Department of Health has determined that submissions will not be released.
Instead, a list of those who submitted will be included in the final report with interested readers free to search for contributions on individual organisations or patient websites.
Where is the transparency or best practice consultation in this approach?
To read the full media release, click here.
To read view some of the collated submissions please visit our #voicesthatcannotbeheard webpage.
We are calling for further submissions to be made available, to have yours published alongside others please email a PDF copy to tdavies@betteraccessaustralia.org.au under the subject ‘Our NMP Submission’.
“Patients as an afterthought must stop”
Better Access Australia’s submission to the National Medicines Policy Review
October 25, 2021
The original National Medicines Policy (NMP) was broader than just savings, but it has been weaponised such that its focus on affordability has become almost the sole focus of its influence. Better Access Australia is calling for an NMP that breaks down the silos and sees medicine policy as integrated into our national health system. A new contemporary NMP must recognise the interdependencies of the system and embrace it and be a leader in this long discussed but poorly executed area of health service.
The NMP must focus on patient health, patient outcomes, patient need as its primary objective. Patients as an afterthought must stop.
The NMP as currently drafted has allowed for a universal waiting system for medicines in Australia to reach unacceptable levels. Our medicines policy must increasingly grapple with the cost of delayed treatment due to delayed subsidy and delayed diagnosis. Better Access Australia is seeking an NMP that addresses these issues.
Better Access Australia wants to see ‘timely access’ as an equal and driving principle for a future NMP. An NMP that emphasises patient need and de-emphasises the over importance the system currently places on the cost to government.
To read the full submission BAA made, click 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.
CONCERNS THAT CONSUMER VOICES CAN’T BE FULLY HEARD IN A REVIEW OF ESSENTIAL POLICY
7 October 2021
Better Access Australia has written to the Minister for Health requesting that consumers be given a greater chance to participate in the National Medicines Policy (NMP) Review.
It is essential to ensure that all Australians who want to participate in a meaningful way to this important review process are able to.
In order to future-proof the NMP for the next twenty years it is crucial that consumer voices are heard. Better Access Australia is concerned that the time frame has been too short to ensure quality submissions can be made.
Please read our letter here.
BAA’s SUBMISSION TO THE PROPOSED CHANGES TO THE NATIONAL DISABILITY INSURANCE SCHEME ACT AND RULES
7 October 2021
Better Access Australia has submitted commentary to the draft Amendment Bill and proposed rule changes in regard to the NDIS.
We welcome positive changes such as the new Participant Service Guarantee and an improved commitment to service and transparency within the NDIS.
Yet, we highlight a need to #MindTheGap in relation to inconsistencies, secondary rules and reviews without participants’ requests.
BAA hold firm in the importance of upholding tenets of co-design in this process:
“The principle of co-design in this process is fundamental and Better Access Australia strongly supports people with disability being centrally involved with this reform process. It is critical to make changes with people with disability, not for them,” Board director Helen Innes states.
It is essential that the NDIS can be navigated by those that it is meant to support. It is imperative to #MindTheGap between legal frameworks, administrative rules and participants’ experiences and needs.
Please read our full submission here.
COURT MAY FIND ACTIONS UNDER THE OPIOID DEPENDENCY TREATMENT PROGRAM TO BE UNLAWFUL
1 October 2021
The Opioid Dependence Treatment (ODT) Program is the only program on the Pharmaceutical Benefits Scheme (PBS) where patients are not protected by co-payments and the safety net and instead charged uncapped fees often in excess of $200 per month.
Minister Hunt and his Department have repeatedly asserted that the ongoing financial discrimination imposed on patients accessing PBS medicines via the ODT Program are legal and justified. They have commenced a protracted 18-month post market review (PMR) to defer taking any action on the Program.
The Senate Standing Committee on Delegated Legislation has challenged this assertion in its letter of 16 August 2021 concluding that:
“…a challenge to the validity of the current special arrangement on the basis that it should have been registered as a legislative instrument may result in a court finding the actions undertaken under the current arrangement to be unlawful.”
Some 50,000 patients rely on the PBS to help them manage their chronic disease of opioid addiction. The majority of these patients are managing addiction as a result of government-subsidised pain medications.
The Morrison Government will fund a patient’s addiction but insists they make huge out-of-pocket costs towards the medications that keep them well – something no other patient group is asked to do. Government refuses to pay the dispensing costs for the medicines and instead demand pharmacies charge uncapped fees to patients to cover the cost of the service. These charges can be in excess of $200 a month and are charges that a court is likely to find to be unlawful. Multiple coronial inquiries have found these fees prevented treatment and ultimately lead to the loss of many lives.
Minister Hunt’s correspondence to the Committee suggests the department of health has known about this legal concern since 2019.
Around 3 people lose their life each day due to the unaffordable cost of these treatments.
These lives are being lost every day as a result of this intransigency and the Minister’s delaying tactics. Just as Robodebt devastated so many vulnerable Australians, Minister Hunt’s refusal to take immediate action to end this discriminatory program is equally devastating. Enough is enough.
To read the correspondence between the Senate Standing committee and Minister Hunt please click here.
For full details of the Senate Standing Committee Delegated Legislation’s findings and Better Access Australia’s call for action, please read the attached media release 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
IT’S THE COVER UP THAT KILLS YOU –
ANOTHER AGENCY FAILS VULNERABLE PATIENTS
4 August 2021
Following Minister for Health, Greg Hunt’s advice to the Parliament that his department made a commitment to the Office of the Australian Information Commissioner (OAIC) in 2019 to register the special arrangement for PBS medicines under the Opiate Dependence Treatment (ODT) Program, the OAIC has joined the Minister and his department in perpetuating the cover-up of this discriminatory program.
A copy of the media release is available here.
A copy of the OAIC decison is here.
A copy of Better Access Australia’s request for review of the OAIC’s decison here.
SENATE COMMITTEE REJECTS MINISTER HUNT’S FOB-OFF AND DEMANDS ANSWERS ON THE LEGALITY OF PBS PROGRAM
24 June 2021
A key Senate committee has told health minister Greg Hunt to ‘try again’ on explaining the failure to lawfully implement the discriminatory arrangements for an important PBS program.
Better Access Australia wrote to the committee seeking its action in relation to the Opiate Dependency Treatment Program (ODTP) under which the government funds medicines through the PBS but removes basic PBS protections including co-payments and the safety-net.
The committee wrote to Minister Hunt on 14 April 2021. It has published the minister’s response and its own follow-up. This correspondence shows the committee has found the minister’s response insufficient and have given him until 7 July to provide a better explanation of why he and his department have ignored the Legislation Act 2003.
Better Access Australia welcomes the committee’s decision to hold the Minister for Health and his department to account for their administration of the ODTP.
A copy of the media release is available here.
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.
GOVERNMENT USES PROCESS TO TRY AND COVER-UP ONGOING DISCRIMINATION
31 May 2021
In another example of the Morrison Government’s use of process to avoid having to take action to help the most vulnerable in the community, the Department of Health has released draft terms of reference for a protracted 18-month “medical experts” review of the Opiate Dependency Treatment (ODT) Program rather than address the ongoing illegal discrimination perpetrated against these patients by bureaucrats, pharmacists and clinicians, as approved by Minister Hunt.
A copy of the media release can be accessed here.
BETTER ACCESS AUSTRALIA LAUNCHES VIDEOS ADVOCATING FOR CRITICAL CHANGES TO NEONATAL SCREENING PROGRAMS
24 May 2021
Better Access Australia, with the generous testimonies of patient and families, has launched two videos highlighting the need for changes to neonatal screening in Australia.
The videos advocate to update the number of conditions screened for in order to support families and patients (of all ages) suffering the burden of rare diseases, bring Australia in line with international best practice and offer the best chance for clinical trials to find treatments and cures.
Our health care system needs to offer a start of life approach as much as it prioritises end of life treatments.
The videos and more information on neonatal screening change can be found here.
THE DEVIL IS ALWAYS IN THE DETAIL AND BUDGET 2021-22 IS NO DIFFERENT WITH MANY GAPS REMAINING
11 May 2021
Better Access Australia notes that the 2021-22 Budget makes some significant funding investments in health but continues to fail some of the most vulnerable in the community.
We need to #mindthegap in equality of access to our health system.
The devil is always in the detail.
A copy of the media release can be accessed here.
SENATE COMMITTEE TO ASK MINISTER FOR HEALTH ABOUT STATUS OF OPIATE DEPENDENCE TREATMENT PROGRAM
29 April 2021
Following concerns raised by Better Access Australia, the Senate Standing Committee for the Scrutiny of Delegated Legislation has advised it will write to the Minister for Health seeking advice on the technical status of Opiate Dependence Treatment (ODT) Program.
A copy of this media release can be accessed here.
A copy of the Senate Committee’ letter to Minister Hunt can be accessed here.
BILL ABOLISHING THE PROTECTIONS OF S135A OF THE NATIONAL HEALTH ACT SHOULD BE IMMEDIATELY WITHDRAWN
19 April 2021
Better Access Australia (BAA) is committed to advocating for improved access to health and continuity of care for all Australians. This is why BAA has written to health minister Greg Hunt calling for the withdrawal of a Bill that has raised serious concerns amongst stakeholders over the implications for access to medicines in Australia.
A copy of the Letter to the Minister for Health can be accessed here.
A copy of this media release can be accessed here.
UNINTENDED CONSEQUENCES OF GOOD INTENTIONS?
7 April 2021
The Senate is currently considering the National Health Amendment (Pharmaceutical Benefits Transparency and Cost Recovery) Bill 2021. Could this Bill have unintended consequences affecting Australian patients’ access to future medicines and technologies?
“Better Access Australia supports transparency in decision-making for the health and disabilities sector from all parties. Any move to improve consumer awareness of the system that determines their health and support services access is welcomed but that transparency must come from both sides – government and industry. And it must only be after full consultation to ensure there are no unintended consequences.
In particular, BAA recognises the health technology sectors’ increasing concerns about international reference pricing and the risks for timely access to new technologies and treatments in Australia. Our lack of access to the COVID-19 vaccine demonstrates the risk of being last in line.
Australians currently wait an average 820 days for subsidised access to a new medicine following safety and efficacy approval by the TGA. This is too long and could be made worse by this measure. BAA wants no more than 100 days from TGA approval to government funded access to subsidised treatment. It is beholden on the Government in introducing these new measures to reassure patients this approach will improve access not jeopardise the already tardy access to treatments in Australia.
We ask the Senate to refer this Bill to the Community Affairs Committee to ensure all implications of this Bill are understood and consulted upon. The Zimmerman inquiry is currently exploring all barriers to new technologies in Australia, we should not be adding risks to access without a clear and transparent consultation process.”
A copy of this media release can be accessed here.
BETTER ACCESS AUSTRALIA CALLS FOR SENATE INTERVENTION ON OPIATE DEPENDENCE TREATMENT PROGRAM
9 March 2021
Better Access Australia has written to the Senate Standing Committee for the Scrutiny of Delegated Legislation seeking their urgent intervention to end the financial discrimination for patients accessing opiate dependence medicines on the Pharmaceutical Benefits Scheme.
“After weeks of inaction on this issue by the Minister of Health the Hon Greg Hunt MP, Better Access Australia is calling on the Parliament to urgently review the legal basis for this continuing discrimination and end the gap in access for some of the most vulnerable in our community.
“Why are these the only medicines on the PBS where a patient can be denied their co-payment and safety net protections and be charged unlimited out of pocket expenses on a daily basis at the recommendation of the government? And on what basis is this program denying these patients their legal protections under the National Health Act 1953?
“The Government and its advisory committees acknowledge that over 75% of patients accessing these medicines are facing these out-of-pocket costs, and further acknowledge those costs are a barrier to people accessing treatment for their chronic disease.
“The time has come to end the arguments about cost-shifting with the states and territories and put the patient at the centre of the system.
“The time has also come for the Government and the Parliament to stop and consider whether what they are doing is legal under the National Health Act, legal under the Legislation Act 2003 and legal under the Antidiscrimination Act.
That’s why Better Access Australia has written to Senator the Hon Concetta Fierravanti-Wells, Senator the Hon Kim Carr, Senator Raff Ciccone, Senator Perin Davey, Senator Nita Green and Senator Paul Scarr to address this circumvention of the Australian Parliament and in doing so address this discrimination and end this gap in equality of access once and for all.
Mind the gap in equality of access to the PBS. A copy of the letter can be accessed here.
A copy of the letter to the Senate Committee can be accessed here.
A copy of this media release can be accessed here.
PUSHING POOR MEDICINE CHOICES TO SAVE MONEY WITH NO TRANSPARENCY
17 December 2020
NPS MedicineWise has combined with some patient and other groups to recommend 70yr old methotrexate instead of the appropriate use of biologicals. The only purpose is to achieve government savings of over $50M - this is a FACT.
Better Access Australia supports clinically appropriate prescribing of medicines. Yet these medicines are 50% cheaper than when 1st listed. Time for earlier intervention to stop burden of disease, not higher use of treatment that cause significant side effects in up to 65% of patients.
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.
NATIONAL DISABILITY STRATEGY
31 October 2020
Better Access Australia has provided a submission on proposals for a new National Disability Strategy beyond 2020.
Better Access Australia argues:
“It is time to be ambitious. Its time to leverage the changed work environment brought about by the COVID-19 pandemic and the accessibility and affordability of technology to rethink the work landscape for people with disabilities and their carers.”
Read Better Access Australia’s submission here.