Improving Awareness and Support for Rare Diseases in Hong Kong

Challenge

As Hong Kong did not have a clearly expressed definition of rare diseases, the industry and public are often found unaware of the diseases and the treatment options. This often led to a diagnosis barrier for doctors to deliver the necessary services.

In addition to stringent and non-transparent funding criteria for these diseases in the market, there are also difficulties in attaining clinical trial recruitment. The other key challenges are affordability and accessibility for patients requiring the proper care.

Approach

We applied a holistic scientific-based approach to ensure that our customer can connect with doctors and patients on increasing awareness and accessibility. These events included hosting patient advocacy groups, expert panel round table discussions, and organizing drug forums.

By bringing together key influencers, advisors, decision-makers, patients, patient associations, support groups, medical practitioners, and politicians together, we first had to build a better understanding of the different objectives on rare diseases.

We facilitated exchanges between local and international experts from laboratories and universities on diagnosis programs. These activities and gathering of stakeholders allowed us to gain a clearer insight into the market, policies, and disease development.

Working closely with the customer, we were able to develop a better patient flow analysis and come up with more extensive market access programs that will benefit more patients in the market.

Result

A key breakthrough was the success in forging partnerships with several key NGOs in the market to bridge the funding for the ADANTS-13 test to the government’s regular fund. The customer can better pinpoint patients and develop clinical criteria enhancement for broader patient access. They managed to achieve a higher number of patients successfully receiving the medication.

The formation of a network of doctors from multidisciplinary and overseas experts and scholars allowed for a 360-degree analysis of the disease, experience sharing, and effective discussions on treatment access.

A written paper was compiled by the advisory board to further kick off subsequent communications, education, and sharing with doctors, patients, and stakeholders. The paper also acts as the basis for further healthcare policy proposals to the local authorities.

Most importantly, patients’ pain points along the patient journey, especially the tedious funding operations, were highlighted and responded to accordingly to reshape the market’s patient support environment. This leads to increased patient commitment.