How legislation can benefit people with HAE in your country

With around 1.5 billion people worldwide going to the polls this year, 2024 could be called the year of democracy. While elections are essential for people to choose their representatives, political change can threaten efforts to increase awareness and advocate for access to diagnosis and treatment. Often, this is as simple as changes in personnel, such as Health Advisors and Ministers of Health, leading to a loss of existing relationships and knowledge.

To address this and protect hard won progress, many HAE Member Organizations have developed a strategy focused on securing legislation that recognizes, protects, and supports patients with HAE.

Global Perspectives spoke with Javier Santana, HAEi’s Regional Patient Advocate (RPA) for Central America and Caribbean, to understand how it all works and hear about recent successes in Latin America. Before becoming an RPA, Javier spent more than 20 years in communications and government affairs, including time as Deputy Communications Director for the Puerto Rico Senate. Later he became a consultant on public policy to legislators and heads of government agencies. He has also worked as a communications advisor to several governors in his country.

[GP] Javier, why is legislation important, surely making politicians aware is enough?

[Javier] There have been great advances and initiatives that improve the quality of life for people with HAE, but these are at risk from changes in government administration. Such changes can reverse or put on hold policies or patient assistance programs that took many years of meetings, advocating, and lobbying to achieve. Having HAE recognized and any support for patients enshrined into law will ensure that MO’s hard-won progress is not put at risk.

[GP] That sounds fantastic, but isn’t speaking with politicians about laws complicated? Do you need special knowledge?

[Javier] From professional experience, I’ve seen how people can be nervous or intimidated when speaking to deputies, legislators, or other government representatives. The reality is that elected officials have a responsibility to help put in place laws that protect and preserve citizens. Often, they are looking for ideas or solutions to social problems so that they can design and promote laws that lead to effective change while also adding to their own legislative record.

On a daily basis, I see citizen groups, non-profit entities, and community leaders visiting the politicians who represent them, to advocate or request legislation. Those who are consistent in communication, who follow up on their proposals or requests, and maintain contact with political leaders, are the most successful.

[GP] What examples of HAE Member Organizations succeeding with this approach exist?

[Javier] I’d like to share 3 recent case studies of success. First, in Chile, the HAE Member Organization, doctors, and other rare disease organizations campaigned to include HAE within an existing law called “Ricarte Soto,” which protects access to services and treatments through a government program. This law guarantees diagnosis and treatment to all patients, regardless of their economic situation.

In the country of my birth, Puerto Rico, we worked with a specialist doctor. They presented the bill, and through the hard work of the HAE patient group, a new law was recently approved to ensure that HAE is included in the government’s list of “catastrophic diseases” (Serious Diseases of Catastrophic Character). Additionally, the law adds HAE to the continuing medical education curriculum; requires that people with HAE are not excluded from insurance coverage; requires that all hospitals and emergency rooms have the HAE treatment guidelines; and ensures that the Government celebrates hae day :-).

Finally, in Mexico, the Chamber of Deputies legislated to recognize 16 May as the official day to raise awareness about Hereditary Angioedema. During this process, support was sought for a law aimed at protecting the rights of patients with HAE, guaranteeing access to effective treatments, and ensuring that no government can change or eliminate the rights of patients with HAE achieved in that country. A commitment has been made to introduce such a law in 2024.

The Capitol Hill Campaign

Annually, the United States Hereditary Angioedema Association (US HAEA) holds an event called ‘Capitol Hill Day,’ where HAE patients visit the offices of their political representatives in Congress. HAEA members raise awareness about the condition, present their daily challenges living with HAE, and ask policymakers to vote on behalf of legislation supporting uninterrupted access to life-saving treatments. Over time this lobbying has led to access to modern medicines, and, thanks to Senate Resolution 286, 16 May is officially recognized as hae day :-).

[GP] What are your tips for Member Organizations reading this who want to get involved?

[Javier] The most important thing is to take the first step. Ask for a meeting, share your knowledge, and present examples like the Ricarte Soto law, or the Law approved in Puerto Rico recently (HAE Law #62 2024). Follow up with legislators, and ask members of your family and friends and other HAE patients in your area to do the same. Additionally, ask your HAE community if they know someone who works with politicians who can help coordinate a meeting. It may seem difficult initially, but I promise it gets easier with practice.

You might also want to consider what you’re asking for – be specific. Some of the requests you can make are:

  • Recognize 16 May as Hereditary Angioedema Day –  to raise awareness about the disease every year
  • Compel the Ministry of Health to create an official government ID for patients with HAE. The intention is to create and keep an official record of patients for faster and easier hospital identification when requesting services.
  • Include HAE within the list of serious or “catastrophic” diseases in your country
  • Require all hospitals and emergency centers to adopt and make the official HAE treatment guidelines available
  • Order health academies and/or medical schools to include HAE in their general education and continuing education programs
  • Ensure the country’s medical laboratories have access to specific tests to detect HAE and make them available
  • Make government agencies identify and purchase modern HAE medications
  • Allow each patient to choose their specialist doctor, regardless of where the patient resides, and the doctor works

Require public and private health plans to cover the cost of HAE treatments.

[GP] Thanks, Javier!

If this has inspired you, HAEi encourages you to discuss this with your Member Organization. There is strength in numbers, and you may uncover helpful political connections or knowledge. And don’t forget, your Regional Patient Advocate is always on hand to support you.