Recently, we spoke to Beverley Francis-Gibson, President of the Sickle Cell Disease Association of America (SCDAA) about what her organization is doing to assist patients with sickle cell disease during the current COVID-19 pandemic.
SCDAA is a non-profit organization created 47 years ago to provide assistance to sickle cell patients and their families in the United States. It is a national grassroots organization that partners with other organizations across the country to assist families.
How is the current COVID-19 pandemic affecting sickle cell disease patients?
The COVID-19 pandemic, as you can imagine, is challenging for sickle cell patients because many of them have not been able to keep their doctor’s appointments that were previously scheduled as a result of COVID- 19.
Also, many of our community health workers who assist our sickle cell families, and coordinating services themselves, have not been able to go to the hospitals or to medical facilities to help assist their clients. Adding to that, a number of patients are experiencing anxiety obviously with not knowing about the disease but in addition they are scared to actually go to the hospital or to a medical facility, especially if they don’t have a mask.
What we have been recommending to most sickle cell disease patients is that they stay at home. If they’re feeling any symptoms as a result of their sickle cell disease, which is typically extreme pain throughout their bodies, that they first contact a medical provider by phone to determine whether or not they should go to the hospital. If they’re asked to come to the hospital, we’re asking them to practice social distancing, to cover their faces, wear gloves, and to wash their hands as it’s being recommended by the CDC.
Are sickle cell disease patients at higher risk for complications due to COVID-19 infections?
The CDC does classify sickle cell disease as one of those diseases with a heightened immune system that could be impacted by COVID 19 and so we are recommending that sickle cell patients to stay at home and stay safe.
Can you describe the COVID-19 Emergency Fund Campaign you developed?
In March, we launched the COVID-19 Emergency Fund Campaign to raise money to assist patients, through our non-profit member organizations. We’ve raised approximately $173,000 and $75,000 has already gone out to member organizations who complete a mini grant application indicating what they would need their money for and how they will use the money to assist patients and their families in local communities across this country.
Global Blood Therapeutics, or GBT, was actually the first funder and provided $100,000 to kick off the campaign. They also have their own Community Fund where they were assisting sickle cell patients across the country with much needed funds and resources to help patients and their families. So together we are impacting the community in major ways. GBT has been a wonderful partner, and not just now ,but whenever we have a major need that impacts sickle cell patients.
How else is SCDAA assisting patients?
As you can imagine, a sickle cell patient lives with this unpredictable disease – one day they are fine and the next day they have a crisis and have to go to the ER. Now, they are dealing with this additional burden of not knowing what the COVID-19 pandemic is going to bring. So, we are trying to make sure that they have the resources they need and that they know who to call if they need help.
The goal is to ensure that no family, no individual, feels isolated right now and they’re not anxious about what the unknown may be. So telemedicine and mental health services are what we’re hoping that they will take advantage of. Also, SCDAA has developed a caregiver/patient advisory as well as a provider advisory for COVID-19 and we are disseminating that information to patients and providers throughout the country. Those two advisories are on our website at www.sicklecelldisease.org/covid-19/ and we want to make sure that everyone has access to that information because it is life changing.