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Advocacy

BCNA advocates on behalf of Australians affected by breast cancer to ensure their voices are heard.

 

Breast Cancer Network Australia (BCNA) works to ensure that Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs. A key focus of our advocacy is to work with health policymakers at all levels of government and health service delivery to ensure all Australians receive equitable and affordable access to the latest best practice breast cancer treatment and care.

In 2018 five key areas of unmet needs have been identified following research with our members, including through the 2017 State of the Nation project, the 2017 Member Survey and The Financial Impact of Breast Cancer survey.

It is these priority areas that will shape and inform BCNA’s national advocacy agenda for this, our 20th anniversary, year and ensure that we can maximise our impact as the leading community voice on breast cancer to reduce variations in care and bring about change.

Throughout 2018, BCNA will continue to scan the horizon for developing issues which are relevant to the needs and interests of Australians affected by breast cancer.

In addition to our lobbying efforts, BCNA will also continue to work with our members to ensure we contribute to the conversation around controversial issues which may have implications for people diagnosed now and into the future, but where research findings are still emerging.

 

BCNA’s Top five advocacy priorities for 2018


1. Faster access to new and innovative breast cancer treatments and
diagnostic tests

In recent years, medical research has improved our understanding of the biology of breast cancer. Instead of breast cancer being viewed as a single disease, we now understand that breast cancer is a group of distinct molecular subtypes. This has changed that way new medications are developed, as researchers are increasingly able to target treatments to the specific subtypes.

While targeted treatments have been shown to be very effective in improving the outcomes of women affected by particular subtypes of breast cancer, the drugs are often expensive and may only benefit a small, specific group of people.

This can make it harder to get new drugs approved in a timely manner.

BCNA will continue to advocate for faster, more flexible processes by which new medications are approved in Australia and listed on the PBS.

In 2018, BCNA will advocate for the following:

  • The listing of the CDK inhibitors on the PBS for all women with hormone-positive, HER2-negative metastatic breast cancer who may benefit from them. BCNA will also advocate for compassionate access schemes to be available to all women who may benefit from the use of a CDK inhibitor as a later line treatment until at least one CDK inhibitor is listed on the PBS for use as a later line treatment.
  •  The listing of adjuvant bone strengthening agents on the PBS for early breast cancer.
  •  The extension of the Medicare rebate for breast MRI for staging purposes where ultrasound, mammography and physical examination are inconclusive for the presence of breast cancer.
  •  The use of MRI in women newly diagnosed with cancer to offer local staging when conventional imaging with mammography and ultrasound are likely to understage the disease.
  •  A Medicare rebate for genomic testing to guide chemotherapy decision-making.

2. Reducing the financial burden of a breast cancer diagnosis

For many Australians and their families, a diagnosis of breast cancer can have a significant financial impact. High out-of-pocket costs for treatment and care, reduced work hours and ongoing costs during the period following the end of active treatment (i.e. surgery, chemotherapy and/or radiotherapy) mean that many women face significant financial hardship. Many women have also described experiencing ‘bill shock’ if the costs of treatment and care are not fully disclosed by those in the health system.

In 2018, BCNA’s advocacy efforts will include:

  • Assisting Australians diagnosed with breast cancer to avoid ‘bill shock’ around high out-of-pocket fees associated with breast cancer treatment and diagnostic tests
  •  The stamping out of excessive fees
  •  Removal of the multiple services rules for breast imaging that prevents women having both a diagnostic ultrasound and ultrasound-guided biopsy on the same day
  •  The development and implementation of new guidelines around informed financial consent

3. Improved access to breast reconstruction

Cancer Australia’s 2016 Statement – Influencing best practice in breast cancer emphasises that health professionals must offer all women the opportunity to discuss the options of immediate and delayed breast reconstruction before a mastectomy is performed.

In 2018, BCNA’s advocacy efforts will include:

  • The promotion of Statement 11 of Cancer Australia’s 2016 Statement – Influencing best practice in breast cancer so that all women recommended to have a mastectomy are offered the opportunity to discuss options for breast reconstruction prior to surgery
  •  Lobbying to ensure that there is awareness and acceptance that breast reconstruction following mastectomy or breast reconstruction following prophylactic surgery to reduce women’s risk of breast cancer is not cosmetic surgery.

BCNA advocacy efforts will include a particular focus on Queensland, the state with the worst reconstruction rates in Australia.

 4. Improved access to specialised breast cancer nurses or cancer care coordinators for people with metastatic disease

International consensus guidelines for advanced breast cancer emphasise the importance of ‘patient navigator[s]’ who can help people throughout all phases of the cancer journey. BCNA endorses the consensus guidelines’ position that this role is best taken by a specialised breast care nurse, or at least a specialised oncology nurse, who should be part of the multidisciplinary team.

In 2018, BCNA will continue to advocate for improved access to specialised breast care nurses or cancer care coordinators for Australians living with metastatic breast cancer.

 5. Better management of lymphoedema following breast cancer treatment

Lymphoedema is a swelling which can occur after breast cancer treatment. Approximately 20% of people affected by breast cancer experience breast cancer-related lymphoedema.

Access to lymphoedema services was the top unmet need in BCNA’s 2017 Member Survey. Over 3,575 women said they had an unmet need around lymphoedema management.

In 2018, BCNA will advocate for:

  • Improved public health options, including risk surveillance services
  • Increased Medicare rebates though the Chronic Disease Management Plan
    (10 up from 5)
  • A Medicare rebate for lymphoedema compression garments

Joining the conversation

In addition to the five advocacy priorities outlined above BCNA will join the conversation about a range of issues, including:

  • The early detection of breast cancer in young women:
     - Ensuring breast symptoms in young woman are investigated appropriately 
  • Shared follow-up care for early breast cancer:
     - Ensuring the perspective of women who have had a diagnosis of early breast cancer are central to the development of the national framework for this model of care. 
  • Breast density:
     - Development of clinical practice guidelines for the management of breast density so that women with dense breasts can be better informed of what their risk of breast cancer is and how they can best screen for breast cancer.
    -  National implementation of the WA BreastScreen program that advises all women with dense breasts that their screening mammogram is less sensitive to cancers and they should speak to their GP if they would like further information on additional screening options such as breast ultrasound, tomosynthesis or breast MRI.