United to Conquer Sickle Cell Disease

SCDC Update, March 2020

SCDAA Releases Health Alert - What Sickle Cell Community Needs to Know About the Coronavirus (COVID-19)

On March 17, 2020, the Sickle Cell Disease Association of America’s (SCDAA) Medical and Research Advisory Committee released Recommendations for Coronavirus (COVID-19) Preparedness.  With COVID-19 on the forefront of nearly everyone’s minds, SCDAA is releasing timely information to the community to help reduce anxiety and empower the community to protect themselves – and their family – from getting sick.  The resources includes frequently asked questions about the following topics and many other important items.

  • What can I do to prevent the spread of COVID-19?
  • How can I get myself and my family prepared?
  • How do I know if I have COVID-19?
  • What should I do if I have a fever?
  • Should I continue getting my chronic transfusions?
  • What do I do if I don’t have a doctor?
  • Should I go to the emergency department if I am ill?
  • I think I am having a pain crisis episode. What should I do?

The potential health risk posed by COVID-19 is a real concern and knowledge that exists about how COVID-19 will affect those living with sickle cell disease is evolving constantly.  It is critical to stay regularly informed by visiting:

  • SCDAA’s online information superhighway, www.OneSCDVoice.com, where SCDAA will regularly post updates that are specific to sickle cell disease
  • CDC’s COVID-19. Website:  www.cdc.gov/covid19

America’s Blood Supply Impacted by COVID-19 - Donate Now 

Concerns over the coronavirus are negatively impacting the nation’s blood supply and it has blood centers around the country appealing to the public that now is the time to donate. “We are facing a national blood supply issue. As coronavirus fears intensify, blood centers around the country are experiencing a significant decrease in donations and blood drives are being canceled,” said Kate Fry, CEO of America’s Blood Centers, an organization that represents nearly 50 blood centers throughout the United States and Canada, and collects close to 60 percent of the nation’s blood supply. “We cannot wait for the situation to intensify further before taking action. The blood supply cannot be taken for granted and the coronavirus only heightens the need for a ready blood supply. The lives of patients depend on blood donors. It is vital that if you are healthy and eligible to give blood that you visit your local blood center and donate.  Blood donors are needed now more than ever,” says Fry. Click here to locate your nearest blood donation center. 

Sickle Cell Society UK Launches New Webpage on COVID-19 and SCD

The Sickle Cell Society United Kingdom (UK) launcheda new webpage that provides the latest information and guidance regarding coronavirus (COVID-19) and sickle cell disease in the UK.  It details general advice and guidance for individuals sickle cell disease, as well as reflects the National Health Service and UK government guidance. 

American College of Emergency Physicians (ACEP) Releases General Patient Resource on COVID 19

ACEP released the Stopthe Spread: A Patient Guide to the Novel Coronavirus (COVID-19).  This guide provides tips on how to minimize the risk of contracting the virus—including whether you should wear a face mask—and how to determine whether a patient should visit an emergency department.

Sickle Cell Disease Coalition Releases NEW Transition Toolkit 

Transitioning from childhood to adult care can be a hard time for people living with sickle cell disease (SCD). People transitioning have the highest number of hospital visits and repeat hospital visits compared to older people with SCD. That is why the Sickle Cell Disease Coalition has put together a toolkit for those who are going through transition. Learn which “medical,” “education,” and “social” questions a person going through transition will need to know the answers to, along with accompanying resources that will help address those questions. If you are a teenager or know a teenager who will soon be moving into adult care, please share this resource and the following social media posts.

TWITTER: Are you someone with #sicklecell who will soon be moving from your childhood doctor to an adult doctor? Make sure to check out @ConquerSCD’s transition toolkit which will give you the tools needed to successfully move through transition! http://bit.ly/2TBsbHl

FACEBOOK: Transitioning from pediatric to adult care for those living with sickle cell disease (SCD) can be a challenging time. That is why the Sickle Cell Disease Coalition has created a transition toolkit for those going through transition. Check it out here: http://bit.ly/2TBsbHl

SCDAA- Michigan Launches SAFE(R) Initiative 

The Sickle Cell Disease Association of America, Michigan launched an initiative to help teach emergency room doctors, in an easy to remember format, how to appropriately care for those living with sickle cell disease (SCD). The goal of SAFE(R) is to empower medical professionals to implement evidence-based sickle cell care. SAFE(R) is an acronym that stands for:

  • Stop the pain
  • Administer appropriate amounts of IV fluids
  • Fever requires immediate blood cultures and IV antibiotics
  • Execute the guidelines
  • Reduce morbidity associated with inadequate acute sickle cell care

If you live with SCD, you are encouraged to download, print, and carry the SAFER card with you to the emergency room. Visit scdaami.org/safer for more information on this initiative.

Scholarships Available for Individuals Living with SCD 

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a $1,000 college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. Applicants must have a form of SCD and be enrolled in, or have been accepted by, a recognized and accredited post-secondary school, including college, university, trade school, or other institution of higher learning. Applications are currently being accepted through July 1, 2020. For more information, or to apply for a scholarship, click here.

Raremark SCD Stories  

Raremark and the Sickle Cell Disease Association of America (Sickle Cell Disease Coalition members) have created videos highlighting the stories of those living with sickle cell disease, as well as their providers. Raremark’s mission is to create a future in which rare medical conditions are as recognized as the most common. Check out the playlist, here.

SCD News from the Centers for Disease Control and Prevention (CDC)

  • The CDC Foundation published “Understanding sickle cell disease: Impact of surveillance and gaps in knowledge” in the journal Blood Advances last month.
  • CDC released a  new Notice of Funding Opportunity (NOFO) forecast: Sickle Cell Data Collection program (DD20-2003), which allows for statewide SCD surveillance. This funding opportunity will improve and expand the current Sickle Cell Data Collection efforts by increasing the number of states to implement the program. Activities will include 1) surveillance team engagement, data collection, and annual reporting of aggregate level data, and 2) analysis of SCD surveillance data and dissemination of results.  Click “Subscribe” on NOFO page to receive updates about this funding opportunity.  The deadline for applications is May 11, 2020.   For questions about this opportunity please contact Mary Hulihan at IBX5@cdc.gov.

Sickle Cell Screening in Africa and India

Most children in Africa and India never get tested for sickle cell disease (SCD) since diagnostic tests are not widely available and not affordable to most families. In the absence of good diagnostics and thus treatment, as many as 50-90% of children with SCD in Africa and India are estimated to die before age five, often undiagnosed. Recently published research by a Case Western Research University team with collaborators in India, Thailand and Nigeria, show how proven electrophoresis diagnosis can be made available in hard to reach settings.

**Upcoming SCD Events**

Increasing Appointment Attendance: A Vital Opportunity to Improve Health Outcomes for Those Living with SCD

The National Institute for Children’s Health Quality (NICHQ) will host a webinar on March 23, 2020 from 3:00 p.m. – 4:00 p.m. ET focused on increasing doctor appointment attendance. To better support individuals living with sickle cell disease (SCD) and understand what causes missed appointments, NICHQ conducted a series of interviews with those living with SCD and providers. Now, they are inviting all SCD stakeholders—health professionals, service providers, community partners, individuals living with SCD and families—to join NICHQ for a live-webinar where they will share their findings and facilitate a discussion on change strategies. Register here to reserve your seat.

POSTPONED - 4th Global Congress on SCD 

Due to COVID-19, the April 7-9, 2020 Global Congress on Sickle Cell Disease scheduled to take place in Paris, France has been postponed. A new date has yet to be determined. Learn more here

First IASCANAPA Conference to be Rescheduled

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) Sickle Cell Conference: Treating the Whole Person will be rescheduled to April 2021, due to COVID-19 concerns.  Details about the rescheduled meeting will be released in the upcoming months. Your understanding and support are really appreciated! 

Foundation for Sickle Cell Disease Research Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize the quality of life and improve survival for the generations of people affected by SCD. The Symposium focuses on interactive education, sharing of best practices, and exploring novel approaches to dealing with SCD that goes beyond theory to develop practical, real-life solutions. The next annual FSCDR symposium will take place June 12-14, 2020, in Fort Lauderdale, FL. Learn more and register today

SAVE THE DATE: ASH Sickle Cell Disease Workshop

Please mark your calendars for the ASH Sickle Cell Disease (SCD) Centers Workshop on September 29, 2020 – October 2, 2020. This workshop will train health care professionals on how to establish a clinical center focused on the needs of adults living with SCD. The workshop will walk participants through the common components of such centers, the process for developing a business plan and advocating to stakeholders, the ins and outs of operations, and approaches to measuring impact and improve on the quality of care provided in these centers. The deadline to apply is May 1, 2020. For more information, please visit the SCD Centers Workshop webpage.

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