Masterclasses in Building Stronger Patient Communities (2 of 2)

Having an impact at the local and national level

‘What inspired me to get started in advocacy? I found my community. I found my people. We united for the same goal.’

– Ersan Sevinç, HAE Türkiye

Ersan Sevinç of HAE Türkiye and Carla Goachet Boulanger of HAE Peru discussed strategies to have an impact locally and nationally. Yong Hao Lim of HAEi performed double duty, acting as interviewer and translating Carla’s Spanish answers into English for the audience.

Responding to the same question as Ersan, Carla felt the driver was the sheer lack of information on HAE in Peru. Thanks to a huge amount of hard work and partnerships with policymakers and fellow advocates, HAE is now included in the national list of rare diseases published by the Ministry of Health. The first clinical guidelines for treating HAE in Peru have also been produced.

In Türkiye, Ersan indicated that their efforts have also been successful, with access to modern therapy and some medicines even produced domestically.

Part of the success in Peru was down to partnerships and presence. HAE Peru representatives would travel to every region to hold talks and seminars with healthcare professionals. Now, there are governmental online platforms that allow them to reach even more doctors, especially as HAE Peru is a small organization with limited resources and is legally prohibited from seeking support and funding from the pharmaceutical industry.

As a result, Carla told the audience they had to become creative about fundraising. They’ve had bingo and raffles amongst members, their family and friends. Additionally, you can persuade small businesses to offer money or direct support, such as refreshments at a meeting. It all helps.

Ersan felt that different media offers opportunities, particularly in a large country like Türkiye. They discovered that one of their members was on the TV show, Master Chef. He spoke about his illness on live TV and his social media, which led directly to 10 new patients being diagnosed as they contacted HAE Türkiye after seeing his story.

Carla and Ersan had many ideas for ways to have more impact. These include:

Develop a strategy with data, which you can share with decision-makers. Ersan said: ‘In the end, decision-makers only look for the numbers’
Offer a range of events. During COVID, a Turkish online event attracted more than 250 participants and lasted four times longer than expected due to the volume of questions being asked
Act as a team. Carla recommends working with at least one doctor as well as patients. Collaborating with other rare disease organizations can maximize impact.
Scale over time. The broader your reach, the greater the efforts needed to maintain it.

‘No matter what the obstacles, keep moving forward,’ Carla urged the audience.

Getting political to get results

Despite her young age, Tayra is a seasoned patient advocate and has been part of successful efforts in her native Costa Rica to secure funding and access to HAE medication. With his background in HAE advocacy and government affairs, Javier Santana, RPA, posed the questions in a masterclass dedicated to working with government and political individuals and groups.

The first topic of discussion was the importance of collaboration with governments. Tayra told the audience that HAE is not seen as a disease in some countries; engagement is necessary to change the situation. She recalled that even after direct communications between HAE Costa Rica and the health authorities had started, several patients died due to lack of treatment. By the end of the process, patients in Costa Rica had approved medication, doctors who specialize in HAE, and an ID card that identifies them in the case of emergencies.

Acknowledging that approaching government representatives can be intimidating, Tayra said these contacts are essential. Governments are the people who buy modern HAE drugs and ensure patients are treated with dignity and compassion. It is up to us to educate them, she said.

‘You elect government officials. They are there to help you.’

One important point from the discussion was the transition between representatives after elections and the harm this can do to campaigning. Javier and Tayra both agreed that working to have HAE laws passed will ensure that even if politicians and governments change, people with HAE will still be protected.

Javier offered his tips for what needs to be in any proposed law:

Include hae day :-) in the law to create awareness annually
Create official identification of HAE patients so that it is easy to know how many people need support and treatment
Include HAE on any list of catastrophic diseases (diseases that require prolonged hospitalizations or recovery)
Adoption of HAE treatment guidelines
Courses related to HAE should be included in medical school curriculums
The right to access HAE tests
The HAE specialist decides access to HAE medication
Plans to cover the cost of HAE treatment

Tayra shared the following tips for actions to take to be successful:

Identify the needs of the patients in your country
Collaborate with people from HAEi who can support you
Make a list of all the Stakeholders who you need to meet; for example, health ministers
Find out who within your organization can help or might have prior experience or relationships with politicians
Work as a team. Success is more than one person’s job.

Tayra explained that HAE Costa Rica owes a lot to her great colleague, Tiana Madrigal, who made multiple efforts to seek action from the Government. Tiana spoke to the media and secured the first meeting with the Minister of Health of Costa Rica, where she was clear about the needs of patients and the problems in hospitals. ‘It is up to us to maintain the great effort she and other colleagues made,’ Tayra told the audience.

Pharmaceutical company collaborations

Unfortunately, Ahmed Ali Abudahir, HAE Libya, could not attend the GLW due to travel issues, so Fiona Wardman, RPA, flew solo on-stage and shared her vast experience working with the pharmaceutical industry at the global and national level.

She started by reminding the audience that HAEi Advocacy Academy offers free courses on working with the pharmaceutical industry, and these are a great first start for everyone. It provides information on what to do, what not to do, and how best to work with them, and it explains the rules and codes of conduct that pharmaceutical companies must adhere to.

‘There are lines that industry and advocacy organizations cannot cross. As advocates, we must be ethical and professional, as well as have open discussions.’

Referencing her experience in HAE Australasia, Fiona described how they managed relationships with the industry. By discussing goals and objectives, she said it is possible to align on activities. Once that happens, a funding proposal is usually needed, which opens up different options. She suggested that an ‘unrestricted grant’ is the best way to go, as it provides more scope for how you can spend the money to deliver the purpose for which it was agreed upon.

At this point in the process, Fiona said anyone with questions should contact their RPA, who can advise and support them. The first proposal might not be accepted, but there are always chances to revise and resubmit.

Despite the source of the money, Fiona made it very clear that you must ensure you stay true to yourself and what you need.

It is also vital, she said, to remain open to all, which can be difficult in countries with only one medication and company. An organization should never align so much with one company that it closes the door for others. HAEi remains strictly company and product-neutral to ensure there are options for everyone.

Although Ahmed couldn’t be there, Fiona represented his voice by sharing his case study.

The situation has been very challenging in Libya, but by working with a medical supply organization, Ahmed could streamline the procurement process and ensure medication was available when needed. The HAE Libya team needed to persistently lobby health authorities and the medical community to achieve this. Ahmed advised collaborating with medical supply organizations as part of a strong network, which can accelerate access to necessary treatments.

Fiona added her advice to Ahmed’s. She suggested:

Consider privacy. Keep patient data to yourself and never give out patient names to the pharmaceutical industry
When you get funding, be careful to use it for the purpose intended
Be transparent and clear about where the money is going and how it has been used
Show the need for treatment to the pharmaceutical industry
Talk to whoever will listen
Ask about clinical trials, as these can increase access to therapy, even in resource-constrained countries
Remain highly professional in relationships with all stakeholders

Innovations in fundraising

The next masterclass was dedicated to fundraising. Maria Ferron, RPA, invited Natasha Jovanovska of HAE Macedonia onstage and asked about successful fundraising.

Natasha described a children’s workshop that took place in a Macedonian park. The weather was good, and there were many activities for children, including making friendship bracelets. The biggest idea was for young people to experience trying activities while having a swelling attack, achieved by putting dough on children’s hands to mimic the swelling.

In addition to communicating the nature of the illness, Natasha felt that this was successful as it tapped into people’s willingness to donate more when they or their children are having fun.

HAE Macedonia specifically promoted this event to women and mothers. They used this approach for another event in a shopping center. Natasha believed that people are more likely to donate if they’ve already spent money, making this a good location. The event included dancing acts and was in partnership with the shopping center.

Knowing your audience was something Natasha took very seriously. In their outreach to healthcare professionals, they knew that social media reach would have limited impact due to the lack of IT skills among the target audience. It was far better to create an in-person event, especially if it offered professional accreditation, as this is a requirement for doctors to continue to practice.

When asked about working with donors, Natasha stressed the importance of hard work and consistency, as earning the sponsor’s trust is vital. Natasha felt finding a sponsor that aligns with your mission and values was important. In health, sponsors are primarily pharmaceutical companies, but some other companies invest in social responsibility, which can also be a funding source. Natasha advised that being proactive with pharmaceutical companies is vital, as is understanding what both parties want from any partnership.

Natasha said another piece of advice, which might seem counterproductive, was to invest a little to make more money. She referenced a Macedonian saying in which you may have to give up smaller fish to catch a bigger one. Her example was their first fundraising event, a big concert in a city park. They had performers willing to play for free but needed to pay for a sound system and licenses. By investing their own money, they earned the trust of future sponsors and ultimately attracted media attention, leading to national TV coverage.

In conclusion, Natasha shared a favorite story. The famous inventor Thomas Edison was said to have made 2000 attempts to make the lightbulb. Far from seeing these as failures, Edison reportedly said that he discovered 2000 ways not to do it and one way it worked.

‘Always take the positive spin; eventually, you’ll find your own light.’

Make sure your events aren’t a zoo

Sadly, illness had reduced this masterclass from three participants down to two. Karina Langsager, one of the HAEi specialists dealing with event management, could not attend due to illness. Everyone wished her to get well soon. Patricia Karani, RPA, moderated discussions.

She and Michal Rutkowski, HAE Poland, identified two HAEi tools designed to make event organizing easier and faster: EventZoo Lite and EventZoo Max. But what’s the difference? Michal was asked. He replied that it is simply a question of scale and complexity.

EventZoo Lite
It is a registration system for meetings under 100 participants, with no fees, flights, or accommodation; you are just registering attendees. It is, Michal said, very, very easy. You let Karina at HAEi know what you need at least 15 days in advance, and everything will be set up for you.

From his experience of a recent youngsters’ event, Michal felt that EventZoo Lite made this easy. Ensuring all the data is captured in one place makes contacting attendees easy. ‘It also saves our time,’ he added.

Patricia wondered about the level of customization offered. Michal said there is a wide variety of templates and custom options.

EventZoo Max
It is a system for events on a larger scale: over 100 participants. It also offers functionality to manage flights and accommodation, etc. Most people present will be aware of EventZoo Max, Michal said, as HAEi used it to manage and register participants for the GLW. Like EventZoo Lite, you can completely customize EventZoo Max.

Patricia voiced the questions many would be asking: With so much personal information, how secure are these tools? Michal understood the concern and reassured everyone that these systems are designed to be highly safe, with privacy built in. Michal asked one of the system’s designers, IT expert Morten, about EventZoo security. Morten said the only chance of getting into the server would be to kidnap him. ‘And Morten looks like a Viking-it’s impossible to kidnap him,’ Michal quipped. The systems are very, very secure.

To finish, Patricia asked Michal to summarise the benefits he had seen using these tools in HAE Poland. Michal listed the following benefits:

It makes the event a lot easier to organize
You have way less stress
You are in control of participant details and timings, such as arrivals or dietary requirements
It’s is GDPR compliant, so very secure with personal data
You can focus on what’s important: having a great meeting!