Positive Solutions started this new year with the launch of a bold campaign to help fight against genetic diseases – and administrative idiocy – in France. Rare diseases are a major public health problem, not just in France, but across the globe:
- 30 million people in the US live with a rare disease; that’s 10% of the population or 1 person out 10
- Europe holds the same number of people: 30 million
- France has 3 million
- Worldwide, it’s an estimated 350 million people affected by a rare disease
Call that rare?!
Worse still, 60% of those affected by a genetic disease are children, of which 30% will not live to see their 5th birthday. And as if being struck by a genetic disorder wasn’t life-shattering enough, the development of therapies is falling well behind the patients’ needs: 95% of rare diseases don’t have a specific treatment.
That is why Positive Solutions rallied behind GITPIS (Genetics Institute for Patients, Therapies, Innovation and Science), an unprecedented project that aims to bring together 350 French and international researchers, 150 healthcare professionals, a dozen drug startups/companies, NGOs and patients under one roof – with one goal in mind: speed up (by up to 5 years) the development of treatments.
But today, although the project is entirely self-financed and its business and scientific engineering has been validated by all (European Central Bank, local authorities, the City of Marseille, major financiers and the medical community), the project has reached a deadlock and is now threatened.
Because, a key collaborator, the “Assistance Publique des Hopitaux de Marseille” (AP-HM), which controls and regulates the public hospitals of the city of Marseille, has backed out of its commitment to the project. The reasons are uncertain, not to mention obscure and fishy.
After 15-month of unsuccessful dialogue with the AP-HM, Positive Solutions stepped in and developed an all-out communication strategy (in concert with a Paris-based PR agency) that would put the AP-HM in a tight spot. The campaign kicked off with a video we produced to publicly condemn the AP-HM’s sudden volte-face and call on French-European citizens and politics to support GIPTIS.
It’s been less than a month after the start of the campaign… more than 14 500 people have signed the petition launched for the occasion, the video has totaled over 8 000 views and generated a dozen press articles in major national online and print publications, which have been shared by nearly 500 000 people; the French President and Ministry of Health have communicated their moral support…. and the AP-HM has finally decided to return to the negotiating table!
The battle isn’t over, we will continue to strategically support GIPTIS until the AP-HM bows and gives its full green light.
But meanwhile, hope is restored. And that, for people affected by a genetic disease, means the world. Help us help GIPTIS see the day of light in 2020: share the video & sign the petition. If you want to know more about GIPTIS & genetic diseases, you can also watch the full-length version of the video.