In 2017/18, we received 63 direct requests for treatment from 20 countries such as Botswana, India, Iran, Kenya, Lebanon, Pakistan, Sri Lanka, Uzbekistan. By working closely with Sanofi Genzyme, Pfizer and Takeda (formerly Shire) we helped give a future to 35 Gaucher patients as they received donated ERT.
These are programmes managed by the manufacturers of medicines for Gaucher disease where they donate medicine ‘free of charge’ to patients where the patient is not able to access the medicines through reimbursements. Each company's charitable access programme operates in a different way and will all have a set of eligibility criteria that will need to be met.
The IGA operates a database where we record all requests that are received. This information is then shared, with permission, by the IGA with anyone we believe may be able to help the patient. We will advocate on behalf of the patient. The IGA has built up a strong relationship based on respect and trust will all of the companies and works very hard to support patients in a transparent manner.
The IGA currently works with Pfizer, Sanofi Genzyme and Takeda who have all donated medicine through their charitable access programmes to Gaucher patients globally.
Please download our data collection form and return it to Jo McPherson email@example.com. By completing this form, it gives the IGA permission to share the patient's details with each of the pharmaceutical companies that we work with in the hope that they may be able to help.
For more information on the IGA's humanitarian aid efforts please contact Tanya Collin-Histed firstname.lastname@example.org