WHAT IS CORONAVIRUS (COVID-19)?
COVID-19 is a respiratory illness caused by a novel virus that has been spreading worldwide. Community-acquired cases are confirmed in California. Reported illnesses have ranged from mild to severe. Older people and people with certain underlying health conditions like heart disease, lung disease and diabetes, for example, seem to be at greater risk of serious illness.
As a reminder, we recommend observing these simple tips to help stay well:
- Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If using hand sanitizer, make sure that it contains at least 60% alcohol.
- Cover your coughs and sneezes with a tissue or sleeve, and then throw the tissue in the trash immediately.
- Avoid touching your eyes, nose, and mouth with unwashed hands.
- Clean and disinfect surfaces often.
HEMOPHILIA TREATMENT CENTER UPDATES
Rady Children’s Hospital HTTC
The HTC office remains open for phone calls and MyChart messages during business hours; Monday-Friday 8:00am – 5:00pm. For urgent calls overnight and on weekends please call the hospital operator at 858-576-1700 and ask to speak to the hematologist on call.
Please be sure to call if you have a concern related to your child’s bleeding or clotting disorder. Please report all bleeds and injuries that require treatment. Please let us know if your child is admitted to the hospital or requires an emergency procedure or dental work.
Please keep track of your child’s supplies and medications.
Being Prepared – From Rady’s
All patients on prophylactic clotting factor or Hemlibra should have one month of medication on hand. Use the medication with earliest expiration date first. Please remember to schedule deliveries with your pharmacy. Please let the HTC know if your child will have a gap in supply.
All patients who treat bleeding with clotting factor should have at least 2-3 emergency doses on hand. Please check your supply for amount of medication and expiration. Please contact your pharmacy for refills.
Rady Children’s Hospital San Diego is working on the ability to do visits via Telehealth. Stay tuned for updates.
UCSD Hemophilia & Thrombosis Treatment Center
The HTTC remains open for calls between the hours of 8:00am – 4:30pm, Monday through Friday (858) 657-6028. Nursing staff and Center leadership are on the ground at the Center but non-critical functions (e.g. physical therapy; research patient visits, etc.) have been curtailed.
We have introduced Telehealth visits for routine follow-up appointments while maintaining the capability to respond on site to urgent patient needs and to be sure clotting factor prescriptions are being filled.
Patients who have a need to contact Center staff ‘off hours’ should call the UCSD central number (858) 657-7000 and ask for the Hematologist ‘on call.’
ACCESS TO FACTOR PRODUCTS
MASAC is providing the attached communication from Genentech/Roche regarding its product HEMLIBRA (emicizumab-kxwh). This statement provides specific reassurance regarding supply chains to its manufacturing facilities worldwide, that they have not identified any critical component that would impact their ability to supply Hemlibra in the future, and their commitment to keeping the hemophilia community informed as this situation evolves.
Please view a letter from Novo Nordisk regarding inventory and access to their products during this time.
NATIONAL HEMOPHILIA FOUNDATION
Statement from Len Valentino (CEO of the National Hemophilia Foundation)
HEMOPHILIA FEDERATION OF AMERICA