The principles for the administration of the program included the following:
- ease of access to reimbursement for all eligible women
- efficiency of reimbursement to eligible women
- efficiency of implementation of the program through minimal additional infrastructure costs
- appropriate accountability structures in place to monitor and audit the program
- consistent national approach across all jurisdictions
- sensitivity to the needs of the eligible women accessing the reimbursement.
3.1.1 Ease of access to reimbursement for all eligible womenIt was agreed by all respondents that overall, the program had resulted in an improvement in access to reimbursement for external breast prostheses, due to the following factors:
- the program is administered through Medicare Australia and offices are located in most major towns across the country
- some previous state and territory programs covered only a "one-off" prosthesis for each woman, or provided a smaller fee of reimbursement to women than currently offered under the national program
- breast prostheses are now more affordable under the program
- the claims process under the national program is more straightforward than previous programs
- women no longer require a letter from their surgeon validating their mastectomy in order to be eligible to receive the reimbursement
- greater numbers of women are able to choose their prosthesis fitters (in the past, women in some states and territories were fitted whilst in hospital by an assigned fitter).
Overall, whilst respondents were extremely positive about what the program offered women, and the fact that it provided a consistent approach to administering reimbursements to all women across Australia and had improved women's access to reimbursement, it was clear from consultations that there are groups of women who are not accessing the program for a number of reasons outlined below. Top of page
Problems in affording the up-front payment for prosthesesAmong respondents, it was widely believed that whilst the program provided the impetus for women to purchase an external prosthesis, there were still those who, due to lack of funds, were unable to afford the up-front payment of the prosthesis and thus could not access the reimbursement. One representative of a stakeholder organisation commented that "it's a really good program - if you're wealthy".
All evidence for the inability to afford the up-front cost was anecdotal and it was not possible to quantify the number of women who were suffering financial hardship. The department reported that it had received approximately 45 letters or emails from members of the public, breast care nurses, breast prosthesis suppliers and Members of Parliament regarding the potential financial hardship of the reimbursement nature of the program. In particular, concerns had been expressed for women who are on a pension or health care card, who are elderly, who are single parents, Aboriginal and Torres Strait Islander or financially disadvantaged. One breast care nurse said that the most reliable indicator for her was the women who she knew continually postponed purchasing a prosthesis – she estimated these to be around 20% of her patients, mostly from older age groups. Another breast care nurse commented that many families on low or no income were struggling with "multiple problems" and that purchasing a prosthesis was not a financial priority for them. She believes that there are many women out there who will never be able to have a breast prosthesis because of financial disadvantage. It was also recognised that women, and the families of women who have breast cancer, have significant financial outlays to consider following surgery and treatment, and many are not able to justify the $400 up-front payment for a prosthesis, due to other competing financial demands.
One woman who had lived with breast cancer for over a decade said it was "a big ask for women to afford a prosthesis up-front after however many rounds of chemo[therapy]". She had initially been excited to hear about the introduction of the program, but later was greatly disappointed to learn that it would not be a cash payment. She said that some women had thought about donating their prostheses when they passed away, as "although it isn't very nice to think about, other women [who cannot afford a prosthesis up-front] would be very grateful". Another woman who had not yet accessed the program because she could not afford the up-front payment reported that "life is just paying for day to day living and medical procedures at the moment". She was unsure as to when she would be able to save enough money for a prosthesis as she wasn't able to go back to work for some time; whilst she had private health insurance, this only covered her hospital stay. Top of page
It was recognised that whilst some women could charge the cost of the prosthesis to a credit card or borrow money from family or friends, there were many others who did not have these avenues of financial support – particularly elderly women. One breast care nurse reported that some women had to "save up" for the cost of a breast prosthesis for months before being in a position to afford one. Another commented that she had seen women who were too embarrassed to seek financial help to pay the up-front payment and so had simply gone without. It was also noted that women who had bilateral mastectomies were in a particularly financially challenging situation – as commented by one stakeholder, "nobody just has $800 lying around to pay for this up-front".
One breast care nurse reported that the hospital where she worked had managed to "facilitate financial assistance [for those who could not afford the up-front payment] through some very difficult methods, [for instance] through the social work area as a 'financial need' ", and that whilst all loans were repaid eventually, this was indicative of the great need they perceived in some women for assistance at the time of purchase.
State and territory-based Cancer Councils reported that they had received a number of requests from women to provide financial assistance for the up-front payment of a prosthesis. Whilst they did not have the capacity to provide direct financial assistance for the program, some had "financial assistance programs" in place to assist with paying bills and other basic needs (such as food and clothing) which helped to free up money for women or families to afford the cost of a prosthesis. One representative of a Cancer Council said that whilst this was of great assistance to some women, it was still not helping those who were most disadvantaged and had no hope of being able to afford the initial payment of a prosthesis.
Similarly, some breast prosthesis fitters reported providing loans for women who were unable to pay the cost of a prosthesis out of sympathy or goodwill. One fitter commented: "I will not allow one woman who I fit to go without a prosthetic – it is too important for them not to have one". Whilst these loans were always paid back, some fitters said that it could at times be a financial burden for their clients.
A handful of respondents reported that they knew of some women obtaining loans from Centrelink through the advance payment scheme, which allowed lump sum interest free loans of between $250 and $500 in advance from future Centrelink payments (repaid through fortnightly deductions from a pension or allowance).
It was noted by some that previous state and territory-based programs (in particular the Victorian and Northern Territory schemes) had been able to avoid this issue of up-front payments by providing a prosthesis to all women who had undergone a mastectomy, or by covering the cost of cheaper models of prostheses so at least a woman would have a prosthesis. Top of page
Lack of knowledge about the programIt was also clear that whilst the program is accessible, this was only the case for those women who know it exists. According to women's responses to the evaluation survey, the most common means through which women found out about the program was their breast care nurse (42% of responses) or their breast prosthesis supplier (34% of responses). Many women commented that they did not know how they would have found out about the program if they hadn't received information through these avenues.
Whilst the evaluation survey was not representative of all women who have accessed the program, it suggests that for those who had their mastectomies some time ago or who weren't wearing a prosthesis, there are many barriers faced in finding out about the program due to the following:
- they may have had their mastectomy some time ago and therefore are not finding out about the program through clinical pathways
- they may not currently wear a prosthesis and therefore are not aware of the process of purchasing a prosthesis and the fact that there is a reimbursement program available
- they may have had their mastectomy some time ago and do not know that external prostheses exist (many breast care nurses and prosthesis fitters reported that they had come across women who had made bags of bird seed to put into their bras, or that they were using their husband's socks)
- they may not be 'plugged in' to breast cancer organisations, support groups or communication channels (such as the Cancer Council, NBOCC or BCNA) which have publicised the program
- they may live in a rural area and not have ready access to mainstream services (including a Medicare Australia office), or may have trouble accessing a prosthesis fitter.
Consultations with medical practitioners and others also suggested that GPs and surgeons knew very little about the program, suggesting that the program is being communicated by the breast care nurse, following surgery. This was a concern raised by respondents, particularly in that GPs and surgeons could be an important source of information for women who had their mastectomy some time ago and no longer access a breast care nurse. One surgeon suggested that "clinicians [in particular surgeons and GPs] treating women with breast cancer should be made more aware of the program." Top of page
Women on private health coverSome respondents expressed concern that women with private health cover are at a disadvantage in accessing the program due to lack of communication about their options. Firstly, it was recognised that women may not know about the program due to the fact that many private hospitals do not assign breast care nurses to breast cancer patients (breast care nurses have been identified in the evaluation as being a primary communication point about prostheses). Secondly, it was understood that women may be discouraged from accessing the Medicare Australia reimbursement because they believe they have to claim for their prosthesis through their private health insurance, if available. Respondents noted that some women have been disadvantaged in the amount they have been reimbursed by their private health insurance, and the time taken for the reimbursement to be received. By claiming for an external prosthesis through private health cover, some women also jeopardise their capacity to claim for other items in their recovery from breast cancer, for instance chemotherapy, as some health insurers only allow members to claim from a group of items for breast cancer, with a limited ceiling of reimbursement available.
One woman commented: "I would have preferred not to pay the up-front cost of a prosthesis, but at least it is an improvement on what I was offered [monetarily] under my private health care". She had claimed previous prostheses through her health cover and was reimbursed only one third of the up-front payment despite having the highest level of insurance cover.
Some breast care nurses reported that they "steer" both their public and private patients towards the Medicare Australia program, and suggest to private patients that they also approach their health funds. In addition, some fitters advise women to try and claim for their prosthesis through their private health cover, and then to claim the remaining amount through Medicare Australia. It was noted by both Medicare Australia and other respondents that this 'double reimbursement' process caused problems as private health companies preferred to keep the original receipt of purchase, which is also required by women in order to claim through Medicare Australia. Often, due to misinformation or lack of communication, women were having to go back to their prosthesis fitter to obtain a duplicate receipt to submit with their Medicare claim.
Some women were frustrated with their private health insurer for either not providing a reimbursement for a breast prosthesis or paying a minimal amount. One woman commented: "I pay for my private health cover and do not agree that they are now avoiding their share of the cost. The Government should insist that we claim from our private health cover first and then pick up the rest as the Government is [in effect] subsidising private health cover". Other respondents shared this view. Top of page
Cultural or language barriersMany challenges were faced during the evaluation in gaining feedback from women of a culturally and linguistically diverse or Aboriginal and Torres Strait Islander background about their experiences with the program. As such it was difficult to determine to what extent they were accessing the program. Reports from stakeholders and the focus group with women of an Arabic-speaking background suggested that there may be many women who experience problems in accessing the program due to cultural and language barriers.
Some breast prosthesis fitters reported that they had fitted many women of a culturally and linguistically diverse background who had gone on to access the program, and some breast care nurses reported that they had informed a number of patients of a culturally and linguistically diverse or Aboriginal and Torres Strait Islander background about the program. However, other stakeholders felt that generally there was a need for greater information resources which are accessible to women who may not be aware of the program or may not be comfortable negotiating the system to claim reimbursement.
Some Cancer Councils and support and advocacy groups reported that they had difficulties themselves in learning about the needs of women from particular community groups. One advocacy organisation reported that it was of concern to them that they did not know who may be in need of assistance in terms of developing services to support culturally and linguistically diverse and Aboriginal and Torres Strait Islander women. They themselves were trying to improve their networks and communication to women who may not access their services.
There were some reports from urban-based breast care nurses that Aboriginal and Torres Strait Islander women are purchasing prostheses, and that they appear to be aware of the program. A breast care nurse who works in metropolitan Sydney commented that she had had a number of Aboriginal patients who were "very excited about the program". It was not clear whether Aboriginal and Torres Strait Islander women in urban areas are more informed about, and feel comfortable accessing, Medicare Australian and other support services such as breast cancer networks than their sisters in rural areas however.
Many respondents were unable to comment on whether women from culturally and linguistically diverse backgrounds were accessing the program. However, of the five Arabic-speaking women who participated in the evaluation focus group, only one had heard of the program. Some breast care nurses reported that they had communicated the program to numerous patients of a culturally and linguistically diverse background either directly face to face, or by explaining the program to their families where the woman did not speak English. These nurses felt that if a woman had a breast care nurse, she would most likely find out about the program from the nurse. Some of the prosthesis fitters said that whilst they had fitted many women who didn’t speak English, knowledge about the program or the fact that external prostheses existed as an option post-mastectomy was dependent on how well-known the program was amongst a woman's cultural or language group, as news generally spread quickly through word of mouth. This was consistent with suggestions given by focus group participants for greater awareness of the program to be disseminated amongst the Arabic community, for instance through Arabic community centres or Arabic women's groups.
Language barriers to the program are compounded by the fact that all written information about the program was in English. Many breast care nurses reported using an interpreter to explain the program to women if their English wasn't proficient. Some breast prosthesis fitters assisted women who didn't speak English to complete their claim form. Top of page
Eligibility for the programIt was evident through discussions with some respondents that there was a degree of confusion as to who is eligible for the program, particularly with regard to lumpectomies. Queries over eligibility are regularly received by Medicare Australia and are referred to the department as a matter of policy.
Many respondents could not understand why a lumpectomy was not included in the eligibility criteria and it is evident that there is a disparity between what is available to women with a lumpectomy, as opposed to a mastectomy, in terms of financial support. As commented by one breast care nurse: "for small breasted women this (a lumpectomy) can be the same as losing a whole breast". One woman whose claim had been rejected said that she could not understand why a partial prosthesis was not eligible for reimbursement through the program, as she had "lost enough tissue to affect [her] appearance without some kind of prosthesis". She felt that the information she had received about the program’s eligibility was misleading, and worried that women in her position would purchase a prosthesis thinking they would be reimbursed and then find themselves out of pocket.
There were also questions over whether other conditions should be included in the reimbursement program. For instance breast care nurses reported that gene mutation carriers who choose to have prophylactic mastectomies as a preventative for breast cancer were not covered under the program, "yet they are in effect saving the tax payer thousands by making this sacrifice". She noted that "there are a small number of women out there who feel discriminated against by not being able to benefit from this program".
There was also confusion over whether women who have a mastectomy on one breast who then choose to have the other breast removed as a preventative would be eligible – "we can only presume they are fine as you don't need a doctor's letter, however it is still not clear in the eligibility documentation."
It was reported by some respondents that previous state and territory programs included "those who slipped through the cracks" in their schemes but that the national program was disadvantaging some women because of the distinction between lumpectomy and mastectomy. Top of page
3.1.2 Efficiency of reimbursement to eligible womenGenerally, positive feedback was given regarding the efficiency of reimbursements in terms of effort expended in applying for the reimbursement. Many stakeholders noted this was one of the key strengths of the program, as it was a straightforward process for women (and relatively hassle free). The program was also praised for its reliability and consistency in its process of reimbursement.
Of women surveyed, more than three quarters (79%) said they had found the process of getting reimbursed straightforward; and a similar number (81%) said that they had found it easy to gather the necessary supporting information for the claim.
Overall the program had been well accepted by women, and stakeholders reported that they had received little negative feedback regarding the reimbursement process (other than the up-front payment). As one breast care nurse commented, "no news is generally good news". Both breast care nurses and fitters felt that the new program was a huge improvement on previous state and territory schemes, and that there were few barriers in the claiming process for women.
A mixed response was given regarding the timeliness of receiving reimbursement payments however. Some breast care nurses and fitters commented that they had heard women say "it was quite quick". Others said that they had heard of women who had to wait up to six weeks. This was also reflected in the evaluation survey, as just over two thirds of the women surveyed (68%) said they had been pleased with the timeliness in which they had received their reimbursement. Whilst just over half of women surveyed (59%) had received their payment within ten business days, around one tenth (8%) said that it had taken three weeks. Five per cent of survey respondents had received the payment after one month.
These results are interesting as according to Medicare Australia data for the program's first year of operation (December 2008 to December 2009), the great majority of reimbursement payments were made within the stated timeframe of 10 working days as is evident in table 5 below. By December 2009, 99.78% of payments were processed within ten business days. Medicare Australia also reported that they believed the majority of payments were processed within four business days.
The disparity between women's perceptions of timeliness and the Medicare Australia data cannot be explained. However, possible influences may include recall bias, a high proportion of survey respondents who accessed the program in its early months (when processing was not as quick), or a bias for women who were unhappy with their payment to complete the survey. Top of page
Table 5 – Medicare Australia data - percentage of claims processed within 10 business days
% of claims processed within 10 business days
3.1.3 Efficiency of implementation of the program through minimal additional infrastructure costsThere were no reports of additional infrastructure costs to the implementation of the program during consultations with relevant stakeholders. Top of page
3.1.4 Appropriate accountability structures in place to monitor and audit the programIt is evident that the program has appropriate accountability structures in place to both monitor and audit the program. These are outlined in the business rules and service arrangement between the department and Medicare Australia. Medicare Australia has a monitoring and audit system in place, as well as a coding system to facilitate program specific reporting and monitoring as stipulated in its business rules with the department. There are quality processes in place to ensure the accuracy of claim details. Also under the business rules, Medicare Australia is required to provide to the department:
- monthly statistics for the previous month/s, with updated monthly statistics being available within five working days of the previous month
- annual statistics with updated financial year statistics being available from within ten working days of the end of financial year
- processing performance on the percentage of claims processed within the reported period by national and state levels
- the number of refunds made, item code, the total and average amount of refunds paid, the total and average amount of purchase costs claimed, presented at national, state and postcode levels, and also broken up into five year age groups at the national, state and postcode levels
- the number of rejected claims processed, by reject code, at the national and state levels.
Both Medicare Australia and the department consult with one another regularly to ensure accountability for all enquiries or policy issues that may arise. Under Clause 8.2 of the Business Practice Agreement (BPA), Medicare Australia is required to consult with the department prior to introducing any changes to the current arrangements including:
- administrative changes
- changes/ enhancements to the systems that run the program
- other changes that may alter or affect the delivery of service
- emerging policy issues.
3.1.5 Consistent national approach across all jurisdictionsThe program has been successful in implementing a consistent national approach across all jurisdictions. Both the department and Medicare Australia were satisfied that the program had achieved this objective, and respondents were appreciative that all women nationwide were able to take advantage of a streamlined system of reimbursement. The program's consistency was recognised by respondents as a key strength of the program, in that it provides all eligible women equitable access to a reimbursement, and provides access to reimbursement to a larger pool of women nationally.
Overall, respondents reported that the program was a significant improvement on previous state and territory-based schemes. Some 76% of women who completed the survey gave a favourable rating to their overall experience of the program. Under the former state and territory programs women were receiving varying degrees of financial support for their prostheses (all of which were lower than the reimbursement currently offered through the national program). For instance: in New South Wales each area health service (AHS) covered a flat fee of $180 for each prosthesis and the woman would then pay the difference; the Tasmanian scheme contributed $230 towards the purchase of a prosthesis; and in the Australian Capital Territory, the local government would provide a $200 one off reimbursement per person for the purchase of one prosthesis.
The nationalised program was also praised for its simplified claims process. The great majority of women surveyed reported it was easy to obtain an application form, lodge the application form, and obtain the reimbursement following lodgement of application. Top of page
3.1.6 Sensitivity to the needs of the eligible women accessing the reimbursementThere was general consensus amongst respondents that the program provides an appropriate level of sensitivity to the needs of women.
Many commented that this was largely due to the channels through which the program has primarily been communicated – through breast care nurses, breast prosthesis fitters and breast cancer advocacy groups. For instance BCNA and NBOCC present the program with general informational material on life after breast cancer, and many breast care nurses include written information about the program in a general 'breast cancer kit' which they give to their patients following surgery.
A number of women who were interviewed reported that they had been impressed with the empathic handling of their claims and any queries they had. More than three quarters (81%) of women surveyed agreed or strongly agreed that they were treated with sensitivity whilst making their claim.
One stakeholder commented that the process is an improvement on previous schemes and doesn't require the burden of proof. Previously women needed a signed letter from their surgeon; now women are only required to bring the receipt and claim form to Medicare Australia.
Overall feedback was positive regarding Medicare Australia's sensitivity in administering the program, however some women commented that they felt a little uncomfortable going to a Medicare Australia office to claim as they felt self-conscious that staff would know they were wearing a prosthesis. One fitter reported that she provided women with the claims form and submitted the form for them, as often her clients had felt uneasy about going into Medicare Australia due to the fact that they had had recent surgery and didn't feel comfortable going out in public. She also reported submitting claim forms for elderly women or for women in regional areas who were not located near a Medicare Australia office.