Shaping policies and working with governments

HAEi Regional Patient Advocate (RPA), Fanny Schappler, took to the stage with a mission to demystify working with Governments and shaping policy.

She began her talk by emphasizing that achieving policy change is not a short-term activity. Changing laws and improving the way officials deal with HAE patients is a long-term project. It requires, she said, for you to be in it for the long run.

‘To get the change you seek, pack plenty of energy and plan for the long haul.’

She started by defining some important terms used when the topic of policy-making comes up:

• Policy: A set of ideas or plans of what to do in a particular situation that has been officially agreed upon by a group of authorized people.
• Policy-maker: An individual or group of people who have responsibility for setting or establishing the various roles and procedures that govern a community. Policy makers shape public policy through legislation and decision-making.

To really improve the lives and quality of life for people with HAE, the long-term solution is to change policies and laws. “It is the most effective way to increase funding for HAE, resulting in improved access to diagnosis and treatment,” said Fanny. It also means change that endures. By changing the law, people now and in the years to come will receive the support they need for their HAE.

Turning to practical ways to effect change, Fanny outlined 6 steps that everyone can take to shape policy in their country:

1. Understand how things currently work in your country

Every country and healthcare system is different. Finding the answers to questions like ‘What is the current process for drugs to be paid for?’ and ‘What are the current laws regarding rare diseases?’ helps people understand the current situation and identify what needs to change.

2. Agree on your objectives

The second step is to understand the challenge and what you want to achieve. It might be the initial steps or a 5-year plan to effect a change in the law. You decide your vision.

3. Find people to help

Policy change is not the responsibility of a single person. Identify all those who share common interests in goals. Healthcare professionals are allies, as are other groups working in rare diseases, and the media may be campaigning for change. Map all the people and organizations who share your objectives.

4. Gather the evidence

It’s vital to have evidence. Is there already published data on the situation for people with HAE in your country? If yes, you can use that data to show the problem and the need for change. If not, then HAEi is on hand to support and advise on tools and methodologies for gathering evidence through surveys and other research initiatives.

5. Communicate the evidence

Once you have your data and facts, the hard work begins. Start with compelling stories about people’s lives and the struggles they face, backed by data and facts on what is needed to make a difference. Be clear about the change you need.

6. Never give up

Policy change is a hard job, requiring long-term dedication. Celebrate every success, no matter how small. Be aware that in democracies and Governments, there is often a lot of change, with policymakers and politicians only staying in office for a limited period. This means repeating the same message multiple times.

Fanny reminded the audience that change is possible. Case studies demonstrate how you can influence national policies. “Every single one of us can make a difference, and there is strength in unity,” she concluded.