Rare Cancers Australia was established in June 2012 with the goal of providing a strong voice for those Australians with a rare or less common (RLC) cancer. These cancers are individually characterised by small patient groups and low survival rates with the result that there has rarely been either strong advocacy or patient support.

Rare Cancers Australia (RCA) was formed with the goal of addressing this need. It immediately became clear that there was no substantive summary of the state of RLC cancers in Australia and as a consequence it was impossible to engage in discussion or advocacy around the topic.

To address this, RCA decided to carry out a study that would analyse and collate available data on the topic and then produce and release a considered report on the matter.

The Working Together Guide in action

Preparing and publicising this report was clearly going to involve considerable expense and given the low profile of both the organisation and the topic it was extremely difficult to obtain support.

After considerable discussion with both the business community at large and the pharmaceutical industry in particular, a number of pharmaceutical companies agreed to provide grants of between $5,000 and $10,000 to assist with the project.

RCA felt comfortable that a number of these relatively small grants from several companies ensured it was not overly beholden to any one entity, but still had sufficient funds to complete the project.

A successful collaboration

The principals of RCA were not familiar with the resources available to government and industry, despite being experienced business professionals, and industry personnel assisted the RCA to find particular data sets for analysis.

On every occasion where RCA requested assistance or data, it was given without any attempt to influence or direct any resultant analysis. The professional and arms-length approach was reassuring; on no occasion was there the slightest attempt to influence the structure or content of the report.

Addressing key issues and challenges

Rare and less common cancers are often referred to as the “Forgotten Cancers” and are largely ignored when compared to the prominence of common cancers such as breast, melanoma, prostate and bowel. Given their less-prominent status it is difficult to raise funds from conventional sources.

The willingness of the pharmaceutical industry to support RCA and its projects has been of major assistance in completing and publishing the report.

The report received nationwide publicity and the launch at Parliament House in Canberra was attended by over 20 Federal MP’s and advisers and resulted in a massive increase in awareness of Australians with rare and less common cancers.

Respect for independence

Independence was respected at all times. At no point was there any attempt to provide editorial input to the outcome of the report.

Additional benefits

Those working inside the pharmaceutical industry hold a unique perspective on how Australia is funding and using medicines to treat cancer. This perspective is informed by both personal experience and by being part of multi-national organisations. This provides staff with access to practices and models that have been employed elsewhere around the world.

Sharing these perspectives with a local organisation like Rare Cancers Australia is extremely helpful provided, of course, the information is prepared following the key principles of working together.

Areas for improvement

Rare Cancers Australia observed that industry genuinely wants to help patient organisations and rare diseases and cancers that do not fit the standard drug development and reimbursement processes. It is the most accessible source of funds.

The process, however, was tedious and debilitating and required a huge amount of effort and resources from small organisations that would prefer to focus on more substantive matters than fundraising.

It would seem that abuses of process in the past have left patient organisations today with a process that is cumbersome, slow and different for each company. A simpler, faster, more uniform application process ought to be possible without compromising the integrity and independence of patient organisations or the pharmaceutical industry.