Shaping policies

“You can’t just think that someone else will do it,” was Fanny Schappler’s advice to the patients and caregivers assembled in Manila as she gave a practical demonstration of working with governments to shape HAE-friendly policy.

It might sound like a frightening subject, Fanny acknowledged, but it is something everyone can do. The first thing to appreciate is that policy work is a marathon, not a sprint. “You need to pack energy for the long term,” she advised light-heartedly.

Before starting, Fanny gave the following definitions:

• A policy is (1) a set of ideas or (2) a plan of what to do in particular situations that has been officially agreed upon by a group of people, a government, or a political party.
• A policymaker is an individual or group responsible for setting and establishing the various rules and procedures.

“You may wonder what the value of influencing policy is,” Fanny said. The benefit is that better policies can mean improved funding for HAE, increased diagnosis rates, and greater access to treatment options, all of which would ultimately improve the quality of life for patients.

Fanny then provided a step-by-step guide for anyone looking to advance the cause of HAE by working with policy and policymakers:

1. Identify and understand your ecosystem
Here, the job is to understand the healthcare system in your country. How does it work? What are the rules? Is there a rare disease policy in your country? Are HAE medicines available to people right now? A lot of this information can be found simply on the internet. Other advocacy groups might be willing to share their knowledge, too.

2. Define your desired state
The task here is to be clear as to what you want the future to look like. Answer: What will success look like? Additionally, be aware that if your long-term goal is big, then having manageable steps on the way will ensure people can see progress along the way.

3. Find your allies
Identifying and collaborating with others with similar goals is key to success, Fanny advised. Of course, fellow HAE patients are the first step. Other rare disease advocacy groups, doctors, scientists, and pharmaceutical companies could share common interests. Working together achieves greater impact.

4. Gather your evidence
Fanny echoed earlier speakers that evidence is the king. Data is essential to securing policy change, she said. Start by identifying what is and isn’t available. Think about how you can work with healthcare professionals and the scientific community to get the right data that will demonstrate the importance of acting to improve the lives of people with HAE.

5. Communicate clearly
Good communication starts with understanding the audience. What are your policymaker audiences interested in hearing about? How can your data be communicated most effectively? Repetition is the key here, Fanny remarked.

Overall, Fanny told the audience that “Policy change takes courage, time, strength and perseverance, but by having milestones along the way, the overall task becomes manageable.”

Working with governments: A case study

Fiona Wardman then joined Fanny on stage to talk through a policy activity by HAE Australasia. Fiona gave the audience her favorite analogy for policy work, that of building a bridge. We start with a blueprint; then, we need to build strong foundations before the bridge can get us to where we want to be.

The Australian goal was to secure reimbursement for a modern HAE medication. Fiona provided some background on the Australian system, in that there is a scheme that pays for some medications, along with the National Blood Authority. After this scene-setting, Fiona listed some of the many groups and individuals who partner with HAE Australasia: Clinical Immunology Society Australia, doctors, patients and caregivers, and pharmaceutical companies.

Fiona counseled that an important element is to ensure that everybody involved understands and shares the same goal. Whether it is speaking with the media, doing some sort of awareness campaign, or just liking social media posts, it is important that the message is consistent in the ask for policy change.

Referencing another powerful HAEi tool, Fiona said that the free HAEi Connect database makes it easy to contact members and enlist their support whenever there is a request for data, stories, or information from government agencies.

Ultimately, though, Fiona felt the most important element was time. The success of their work in this policy change was 3 years in the making: “Don’t be discouraged. Repeat the same method. It gets tiring, but we must keep proving the point.”

“Governments have no idea what HAE means to a patient. You’re the expert in your own condition. Talk to them about it.”

Fanny concluded by urging the audience not to sit back but to put plans in place, build a compelling story, and keep pushing. Fiona agreed and encouraged everyone to raise their voice together: “You can whisper, or you can yell. With lots of people, someone is going to hear.”