Make a difference – driving change worldwide – how to work best with pharmaceutical industry partners

HAEi RPA Yong Hao Lim led the next session, which focused on how Member Organizations (MOs) are working with the pharmaceutical industry. Joining him were Francisco Sánchez Hernández from HAE Spain, Renata Marchese from HAE Brazil, and Angela Metcalfe from HAE UK.

Renata kicked things off by telling the audience how the relationship with the pharmaceutical industry helped kickstart the Brazilian organization. She said that their MO was introduced through clinicians they worked with and via HAEi. Working with the pharmaceutical industry has meant access to financial support and expertise that really helped them as an organization. It is the means of sustainability, not just of existing as an organization.

The Spanish situation was somewhat different, Francisco noted. HAE Spain has been around for 28 years. Sarah Smith was involved in building a network of industry contacts some years ago, which they still use today. Because HAE Spain is well-established, the pharmaceutical industry regularly approaches them. It is constructive, as due to the Spanish legislative situation, both pharmaceutical companies and the MO must work together to apply the necessary pressure to secure Government action on new treatments.

HAE UK also has a long history of working with the pharmaceutical industry, Angela said. Initially, as in Brazil, the connections came from doctors who told them about new medicines coming through and encouraged them to contact the company. That has now developed into a really important source of funding and support for their projects and campaigns. HAE UK and the industry are currently working together on projects to improve shared decision-making and also produce guides to mental health issues for people with HAE and those who care for them.

Another big plus from working with the pharmaceutical industry, according to Angela, is that you can really understand how a medicine works. It is really helpful, Angela felt, because it means you have the knowledge needed to talk with clinicians.

The changing landscape of HAE management has led to a shift from merely talking about medicine to addressing issues like mental health, Francisco suggested. Whereas projects would historically rightly focus on saving lives, it can now be about quality of life and supporting people to live a more normal life with HAE.

The group discussed the importance of having an international presence. The position of HAEi means there is strength in numbers worldwide, and it unlocks more opportunities to work with pharmaceutical companies than just one MO.

Francisco suggested the metaphor of a triangle. On one side is the patient association, on the second is the clinicians, and on the third is the pharmaceutical industry. Only by nurturing relationships and partnerships between the three groups, will people with HAE have better treatment and more normal lives.

In terms of advice for other MOs, Renata suggested that working with any pharmaceutical company is possible as long as help is given and accepted ethically and transparently, with relationships and financial support clearly declared. Angela echoed that sentiment. She said that in her experience, the pharmaceutical industry is not trying to sell you their product. Working with them means you and your patient community know more about available and forthcoming HAE medicines, which will help patients get the treatment that’s right for them, which is the goal of both the industry and every MO.