Breast Cancer Network Australia

Breast Cancer Network Australia

Founder	[Lyn Swinburne]

Breast Cancer Network Australia (BCNA) is a not-for-profit organisation that supports Australians affected by breast cancer. BCNA works to ensure that Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs. Its vision is to ensure a better journey for all Australians affected by breast cancer.

BCNA is the peak national organisation for Australians affected by breast cancer, and consists of a network of more than 120,000 individual members and 300 Member Groups.[2]

History

IIn 1998, Lyn Swinburne envisaged an organisation that would positively influence the way breast cancer was considered in the community. Her goal was for people to talk openly about the disease and acknowledge its enormous personal impact.

Following a public meeting in every state and territory, more than 300 women came together to discuss issues affecting people with breast cancer. An action plan was developed and formed the inaugural Making a Difference report. The official launch of BCNA took place following this conference, at the inaugural Field of Women, a visual display of breast cancer statistics on the lawns of Old Parliament House in Canberra.

Lyn retired as CEO of BCNA in November 2011. Maxine Morand was CEO from 2011 until 2014. Since 2015, Christine Nolan has held the position of CEO.

BCNA continues to support, inform, represent and connect all Australians affected by breast cancer.

BCNA is one of a number of major breast cancer organisations in Australia. BCNA works cooperatively with the other national organisations including Cancer Australia,[8] National Breast Cancer Foundation (NBCF),[9] and the McGrath Foundation [10].

Advocacy

In addition to providing information and support, BCNA advocates for change and improvements in health care to ensure a better journey for all Australians affected by breast cancer.

BCNA has undertaken many successful national advocacy campaigns on a range of issues that are important to women with breast cancer. The campaigns have resulted in improved treatment, care and support for women with breast cancer.

CDK 4/6 inhibitor drugs for the treatment of metastatic breast cancer

Throughout 2017, BCNA has been campaigning for the local sale and PBS listing of CDK4/6 inhibitor drugs palbociclib and ribociclib. Before its campaign, the only options for people with hormone receptor positive metastatic breast cancer to access these drugs was through a clinical trial or by purchasing them from overseas, at a cost of thousands of dollars a month. Since BCNA launched the campaign, palbociclib has been approved for sale in Australia, however without Pharmceutical Benefits Scheme (PBS) listing. BCNA continues to advocate for palbociclib, ribociclib and other CDK4/6 inhibitor drugs to be available in Australia and listed on the PBS.  

Early access to superannuation for people living with a terminal illness

In early 2015, BCNA raised with the Minister for Superannuation its concerns that people living with a terminal illness, including metastatic breast cancer, were having difficulties accessing their lump sum superannuation payout under the terminal illness provisions. A key issue was that they could not apply for their lump sum superannuation until they had a life expectancy of 12 months or less. As a direct result of BCNA’s representations, the Minister amended the legislation to extend the life expectancy provision from 12 to 24 months. The change took effect from 1 July 2015 and has allowed Australians living with a terminal illness better access to their lump sum superannuation.

Perjeta and Kadcyla campaigns

From 2013 to 2015, BCNA advocated for the inclusion on the PBS of two new important, but high cost, drugs for the treatment of HER2-positive metastatic breast cancer.  In 2014, the Pharmaceutical Benefits Advisory Committee (PBAC) deferred making a decision on these drugs and BCNA participated in a round table meeting with key stakeholders including the PBAC. Perjeta and Kadcyla were subsequently listed on the PBS on 1 July 2015. 

Tykerb campaign

In late 2007, BCNA worked hard both behind the scenes and publicly advocating for the inclusion of Tykerb on the PBS. In January 2008 it was announced that Tykerb would be available through the PBS. However, Tykerb would not be included on the PBS until May 2008, meaning that women who needed the drug during this interim period still had to pay for it.

BCNA convinced the company that produces Tykerb, GlaxoSmithKline (GSK), that they should extend their Tykerb patient access program (which allowed women to access the drug at no cost) until May, when the drug became available to women through the PBS. 

MRI Screening for young women at high risk

In 2005 BCNA worked with a group of health experts to develop a submission to the Medical Services Advisory Committee (MSAC) recommending that a Medicare rebate be implemented for MRI screening for young women at high risk of breast cancer.

After many delays, in 2007 the Minister for Health announced that funding would be provided for the Medicare rebate. However a change in federal government later that year once again resulted in delays. BCNA continued to apply pressure behind the scenes and finally, in February 2009, the rebate came into effect.

Breast prostheses reimbursement program

Since 2004 BCNA had called for a national, government supported scheme which would allow women with breast cancer to access breast prostheses at minimal cost. BCNA argued for a uniform national program which would provide women with a reasonable subsidy to cover the cost of a prosthesis and which would be simple and easy to use.

In 2009, the Minister for Health and Ageing announced that a national scheme would be introduced.

The External Breast Prostheses Reimbursement Program allows women to claim the cost of a prosthesis every two years (up to the value of $400 per prosthesis), with all claims made through Medicare.

Herceptin campaigns (2001 – 2015)

In 2001 and again in 2006 BCNA ran successful campaigns to make Herceptin available to women through government subsidies. In 2012, BCNA advocated for neoadjuvant Herceptin to be included on the Pharmaceutical Benefits Scheme (PBS). In 2015, BCNA advocated for the subcutaneous form of Herceptin (Herceptin SC) to also be added to the PBS.

Metastatic breast cancer Herceptin campaign

In 2001, Herceptin had been approved for use in Australia for women with HER2-positive metastatic breast cancer, but it was not included on the PBS as it did not meet the cost effectiveness criteria. As a result many women were unable to afford the treatment.

Throughout 2001 BCNA advocated strongly for Herceptin to be subsidised by the Australian Government. BCNA’s campaign included direct approaches to the Prime Minister, the Health Minister and other key politicians. BCNA also directly approached the Pharmaceutical Benefits Advisory Committee to discuss its concerns. BCNA’s members also voiced their concerns to the government, including through a media campaign coordinated by BCNA.

This resulted in pre-election commitments from both major political parties to subsidise Herceptin. After the election, the Herceptin special access program was established to subsidise the cost of Herceptin for women with HER2-positive metastatic breast cancer.  In 2015, Herceptin was moved across to the PBS in an agreement that saw two new drugs for HER2-positive breast cancer, Perjeta and Kadcyla, also listed on the PBS.

Early breast cancer Herceptin campaign

In 2006 the issue of Herceptin emerged again following positive results from a number of clinical trials for the use of Herceptin in women with HER2-positive early breast cancer. BCNA's campaign this time took a partnership approach and BCNA worked closely with the Pharmaceutical Benefits Advisory Committee, the Minister for Health and Ageing, Roche (the company that produces Herceptin), the Medical Oncology Group of Australia, the then National Breast and Ovarian Cancer Centre and women with breast cancer.

When Herceptin was still not available to women some months later, BCNA convened a round table meeting bringing together all the key stakeholders. It was at this meeting that agreement was reached to add Herceptin for women with early breast cancer to the PBS. On 1 October 2006 Herceptin was made available through the PBS.

Neoadjuvant Herceptin

In 2012, BCNA and the Medical Oncology Group of Australia lobbied for neoadjuvant Herceptin to be included on the PBS for women who need this treatment. The application was approved by the Pharmaceutical Benefits Advisory Committee and neoadjuvant Herceptin was listed on the PBS from 1 December 2012.

Subcutaneous Herceptin

In 2015, BCNA supported an application to have subcutaneously-administered Herceptin (Herceptin SC) added to the PBS for the treatment of people with HER2-positive breast cancer. The application was approved by the Pharmaceutical Benefits Advisory Committee and Herceptin SC was listed on the PBS from 1 April 2016.

Events and campaigns

BCNA has held a number of notable fundraising initiatives. 

In September 2010, AFL champion Shane Crawford embarked on a 780 km walk from Adelaide to Melbourne called That's What I'm Walkin' About. Crawford's efforts raised $500,000 for BCNA. In 2013, Shane Crawford then raised more than $1.32 million for BCNA after riding 3,600 kilometres (2,200 miles) from Melbourne to Perth in 22 days on his Tour de Crawf bicycle ride.

Field of Women events held in 2005 (MCG), 2007 (SCG), 2010 (MCG) and 2014 (MCG) have drawn survivors together to raise awareness of Australians affected by breast cancer. At the last Field of Women event in 2014, 15,000 people in pink ponchos formed the Pink Lady silhouette, bringing national breast cancer statistics to life in a display of strength and support. The next Field of Women is scheduled at the MCG in Melbourne in 2018 as part of BCNA’s 20^th Anniversary celebrations.    

The Field of Women events have also inspired a number of communities across Australia every year to host their own Mini-Field of Women. They centre around a visual display of 100 Pink Lady silhouettes planted in the ground or on display, and often include a simple ceremony. Personal messages are displayed on the silhouettes by family and friends.

The Melbourne Football Club, AFL and Melbourne Cricket Club have been key supporters of BCNA, hosting a Pink Lady Match at the MCG annually since 2015 to raise funds for the organisation.

Since 2004, BCNA’s major fundraising initiative has been the Bakers Delight Pink Bun campaign. The Pink Bun campaign is an annual three-week fundraising campaign, which sees every Bakers Delight bakery around Australia donate 100 per cent of the sale of their Pink Finger Buns and Paper Pink Lady cut outs to BCNA. In 2017, Bakers Delight donated a record $1.8 million dollars to the organisation from the campaign. Since 2000, Bakers Delight has donated over $18 million worth of funds and pro-bono services to BCNA.

BCNA continues to raise funds and awareness for Australians affected by breast cancer with a number of additional campaigns, including:

• Pink Sports Day
• Pink Lady Luncheons
• Pink Lady Events
• Dine Pink
• Pink Butcher
• Ride Daylesford
• Inspired Adventures
• Carman’s Women’s Fun Run

Patron and board

Patron

• Her Excellency Ms Quentin Bryce AD, CVO

Board

• Katherine Fagg (Chair)
• Michael Happell (Deputy Chair)
• Raelene Boyle, AM MBE
• Jacinta Elston
• Megan James
• Dorothy Keefe
• Bruce Mann
• Lisa Montgomery, AIFS
• Debbie Smith
• Fran Boyle

CEO

• Christine Nolan (2015 - present)

Founder

• Lyn Swinburne, founder and former CEO

External links

• Official website - Breast Cancer Network Australia