GLOBALHealthPR Unites Down Under on World Rare Disease Day

Here in Sydney, we’ve just concluded our 2014 Annual General Meeting (AGM), the first to be hosted in Australia by our partners at VIVA! Communications. And, we could not be more excited about the outcomes! Early on, we got a heavy dose of local in-country updates from GLOBALHealthPR members, who reflected on accomplishments and challenges alike. Next, we used these responses to inform and refine our strategies moving forward. Our member agencies, from over a dozen countries, also shared the latest healthcare trends in their markets.

Most importantly, today is World Rare Disease Day and because of this we spent the greater part of the morning discussing the cold hard fact that medical research innovations alone cannot help patients with rare medical conditions. Our keynote speaker, David Kwasha, Managing Director of Alexion Pharmaceuticals, delivered a powerful message and queried why patients should be denied access to treatments for rare diseases. “Why should any human be discriminated against access to life-saving therapy simply because their disease is ultra-rare? Considering the majority of ultra-rare diseases are often the most life-threatening diseases seen in medicine, and commonly affect infants, children and young adults, we need much greater collaboration between government, industry and the general public in this exciting era in which science is unlocking breakthroughs,” said Mr Kwasha. He challenged partners to devise effective communications-driven strategies to address the dilemma of reimbursement for treatments for ultra-rare disease.

Despite their overwhelming effectiveness (with NNT’s of 1:1 in many cases, according to Mr Kwasha), the outlook is not certain for these patients. “Patients with treatable illnesses are denied potentially life-saving therapies based on the small numbers alone,” according to our  GLOBALHealthPR Chair, John Seng. “Too many governments are saying, ‘Sorry, we don’t have the money for you.’ But we believe that healthcare authorities will respond to not only evidence, but pressure from advocates. It comes down to effective communications.”

At GLOBALHealthPR, we believe this issue needs urgent attention, and are delighted to help rare and ultra-rare disease patients gain access to the life-saving treatments they need. To keep up with the conversation, follow @globalhealthpr and the #AGM14 hashtag on Twitter.