The International Gaucher Alliance is an umbrella organization with more than 50 members all around the world. The IGA represents the interests of the Gaucher Community.
Gaucher disease is a rare disease with an incidence of about 1 in 100,000 live births. Patient groups have worked closely together to share their experiences and to facilitate access to treatment. Scientists and clinicians throughout the world increasingly collaborate both in research and in the development of strategies for the management of Gaucher disease.
Today there are two approved types of life-long therapies available for Gaucher disease, enzyme replacement therapy (ERT) and substrate reduction therapy (SRT).
In these challenging times we have been regularly communicating with our members and the clinical community as the COVID - 19 situation has brought many difficulties and challenges to Gaucher patients and their families, this has allowed us to send one message to our community from doctors that are experts in Gaucher disease outlining the vulnerability of patients and how to reduce the risk of contracting the virus and the importance of staying safe and liaising closely with their treating doctors regarding the continuation of treatment.
One of the biggest challenging issues for patients is being able to receive their ERT infusions, as this means they need to go to the hospital every two weeks which is not possible due to hospitals treating COVID-19 patients and other emergency care, thus patients are missing their infusions.
In the current pandemic context, during a recent webinar organized by the European Working Group on Gaucher Disease (EWGGD) whose members who are leading Gaucher specialists from around the world, recommendations were made to provide home treatment wherever it is possible. Given the evolution of the pandemic and the burdens linked to administration under medical supervision, we strongly encourage the implementation of home treatment for Gaucher patients, to enable them to continue treatment in a safe environment with the aim to implement on a long - term basis for patients that would like to continue.
The IGA is sharing this recommendation to support Gaucher patients, their families and patient organizations to continue with their therapy in this time of COVID-19 situation. We hope you will take this into consideration. We are available to share best practice regarding home therapy and answer additional questions.
Vesna Aleksovska, Chair