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Notes From the EWGGD Webinar On 1 April

15 April 2020

Self-isolation:

Follow Ministry of Health guidelines for individual countries

Gaucher patients with co-morbidities and chronic illnesses have been advised to self-isolate 

Patients with underlying lung disease or splenectomy or other high-risk factors, including those who may be pregnant and our GD 3 community have been advised to self-isolate completely (UK:12 weeks).

All pregnant Gaucher patients in UK being told to self-isolate. 

 

Gaucher treatment:

General consensus was that it was ok for patients to miss some infusions rather than visit hospitals for treatment where there was a higher risk of covid-19

In some countries home therapy has been given to those patients who usually went to hospital to protect them.  In other regions, implementation of home therapy not immediately recommended because of geographic difficulties.  The EWGGD believes home treatment should be strongly considered during this crisis; with provider taking appropriate precautions to reduce risk of transmission.

If a patient is on Cerdelga then they should inform clinicians before starting any new therapies to check for drug interactions. However, the safest approach is to stop Cerdelga for a short while the other treatments are necessary for covid-19. Hydroxychloroquine interferes with Eliglustat so shouldn’t be taken together.  One suggestion is to use MedScape’s drug interaction checker

No problems are reported with supply chain of enzyme or Cerdelga; per manufacturers. Patients and healthcare providers would be informed of any changes.

Physicians should report any safety issues for their databases/registries

 

Covid-19 disease course:

In general, admitted patients requiring ventilation have markers associated with macrophage activation.

So far, no reports of Gaucher patients with severe manifestations of covid-19

 

Data collection

SRV presented the idea of how to capture data relating to covid-19 in Gaucher patients in a standard way.

Are GD patients more susceptible to infection or complications?

Data can be collected locally according to local regulations but should not be shared unless there is ethical approval

  • Gaucher related data
  • Last lab before COVID 19
  • COVID 19 related data
  • Lab during COVID 19
  • Situation of these patients at end of crisis: deceased, effects of loss of treatment, etc.

Ultimately, one goals would be to ascertain whether Gaucher patients who develop covid-19 have risk factors not present in those spared from the infection. Additionally, among Gaucher patients who develop covid-19 are there indicators of prognosis.

IGA:

IGA’s aim is reach out to global community to let them know that we’re here and that we are communicating with Health Care Providers who know and treat patients.  It was important to communicate clear and consistent messages.