Case Study 2: Mito Foundation

Leading a national advocacy campaign to successfully change the law and improve access to a new health technology

Mitochondrial disease (mito) is a chronic and life-limiting condition caused by changes in the way the mitochondria (the ‘powerhouses’ of our cells) work.14 These changes rob the body’s cells of energy and can cause symptoms in any organ at any age. As a result, mito can have a major impact on people’s daily lives and lead to early death.

Mitochondrial donation is an assisted reproductive technology that helps women with some forms of mito to avoid passing the condition on to their biological children.15 The technique uses in vitro fertilisation with the aim of ensuring only healthy mitochondria are passed on. Before the new law permitting mitochondrial donation was introduced, the procedure was illegal in Australia. Consequently, women affected by the most common types of mito were unable to have biological children who did not have mito. The limited options available to them to have children without mito were to conceive using donor eggs or to adopt/foster.

Our advocacy goal

Mito Foundation is a not-for-profit organisation that supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cure of mitochondrial disorders, and increases awareness and education about mito.16

We wanted to change Australian law to make mitochondrial donation legal. Mitochondrial donation was being explored in research and had been considered in an Australian legislative review in 2011. When mitochondrial donation was legalised in the United Kingdom, the Mito Foundation realised we could play a significant role in making a similar change in Australia.

Including this specific goal in our 2016 Strategic Plan was the start of real momentum. We stated that we wanted to “drive legislative change so that Australian patients can have access to mitochondrial donation within five years”. We achieved this goal with the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 being passed in the Australian Senate on 20 March 2022. This was a conscious vote in both houses of Parliament, which meant we needed to communicate with many different Federal politicians.

Clear and consistent communication: ensuring the lived experience and scientific expertise of the mito community was heard

Communication was a key part of our campaign. The mito community (those with lived experience of mitochondrial disease) were front and centre. We supported people to meet with their elected representatives and share their stories. Their advocacy was the fuel of our campaign.

We also engaged a professional Government relations consultant who worked closely with us and helped with building our skills throughout the campaign.

Our medical and scientific advisors and partners ensured we represented the science accurately and advocated within their own settings. One example was the Open Letter published in The Canberra Times in the week of the Senate vote, which was signed by 60 leading Australian scientists.

Approach 2: Communication and storytelling

Guiding the mito community in how to effectively share their stories helped Parliamentarians understand the need for a change in the Australian law.

Finding and engaging effectively with stakeholders and partners

Key strategies that worked well included using existing networks of health professionals and researchers, working directly with the mito community, and supporting them in their advocacy activities. We maintained a Target Stakeholder Activity Manager, which was used to track all interactions with stakeholders and stakeholder meeting documents, including briefs for Parliamentarians.

During this process, we kept the mito community updated through webinars and a dedicated website that provided updates on the campaign and housed resources they could use in their advocacy. We had speakers from the United Kingdom visit Australia and join online discussions to maintain interest in the topic and keep us, the mito community, and our stakeholders informed.

We learnt a lot from reform being implemented in the UK and we shared what we learnt with the mito community in Australia.

Approach 1: Networking and collaboration

By tracking all interactions with stakeholders and keeping the community updated, a wide, informed, and supportive network was built to help get Mito Foundation’s message out across Australia.

Patient and persistent engagement to influence decision makers

Approach 4: Patience, persistence, and flexibility

Building and maintaining strong relationships with a range of stakeholders was a key approach. This was done in a patient but persistent way.

Other key approaches were patient and persistent relationship-building and management through meetings with key political supporters, activating the mito community to speak to their elected representatives, engaging with a public relations agency that had a focus on political advocacy to guide our use of the media in the campaign, showing gratitude to all stakeholders at every stage and knowing when to go hard and when to be patient with the process. These strategies were informed by our Government relations advisor.

Less effective strategies were using online petitions and letter writing tools.  

Some of the challenges we faced

  • Mitochondrial donation will not benefit all community members: A significant proportion of the mito community have types of mito that will not benefit from mitochondrial donation. We made sure that our support services and research funding continued so that mitochondrial donation was not our sole focus. We also tried to use language that was supportive of choice, as we knew not all families would choose this option.
  • Being just public enough: We wanted to build political support, but also avoid sensationalising the issue and unearthing objectors. We used the media selectively and took advice from our public relations partner to achieve this balance.
  • Working to a timeline we didn’t control: The Government set the process that would lead to the change, including two Senate inquiries and a consultation by the National Health and Medical Research Council (NHMRC). The COVID-19 pandemic led to progress being stalled. We had to revise our approach at each stage, identify ways we could contribute and keep the momentum going. For example, in November 2020 we asked the community to write to the Prime Minister and Health Minister calling for an announcement to ensure that another Christmas did not pass without progress. Work re-started in February 2021.

One key ‘take homes’ for how we achieved our advocacy goal

  • Be bold. It was overwhelming at first to take on the task of changing the law. But without taking on the challenge, we would not have succeeded. 
  • Build and activate a community. The community were both the heart and engine room of the campaign. We supported them to reach out to local representatives to build support for change and to identify champions as well as understand those who didn’t support the law change. 
  • Build and buy capabilities. We knew what we didn’t have the capabilities to do and outsourced by engaging a professional Government relations consultant and a public affairs agency. 
  • Collaborate. We did not do this alone. We funded a citizens’ jury project to generate evidence to support the change.17 A citizens’ jury is a group of lay citizens who hear evidence about and discuss a challenging issue. Each participant then contributes to a ‘verdict’. In our citizens’ jury, most jurors approved of mitochondrial donation becoming available in Australia. We also enlisted researchers and their organisations to pledge public support and be involved in various stages of the campaign. 
  • Show gratitude. We focused on this throughout the campaign with all stakeholders. We even expressed gratitude to those Parliamentarians who voted against the law for their robust debate of the issues! 

Key messages

This case study highlights the value of:

  • Networking and collaboration to gain support and expertise from across the rare disease sector
  • Communication and storytelling to ensure the voices and needs of the mito community were heard by policy makers
  • Being patient and persistent when building and maintaining relationships

“Many stakeholders and collaborators were essential to this campaign, primarily, the mito community… [who] were front and centre in the campaign.”

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