SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE

Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care.

About the SAFE(R) Initiative

Access/download a compilation of the NIH guides specific to SAFE(R).

SAFE(R) stems from the sad and dangerous reality that many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications.

Central to the SAFE(R) Initiative is the Sickle Cell 911 (#SCD911) card, the key to a site dedicated to acute sickle cell care, containing NIH guidelines in an easy-access form.

 

For providers, Sickle Cell 911 serves as a portable portal to evidence-based practices, knowledge and resources for treating SCD and its complications.

 

For the patient, it's evidence-based back up of information many have already shared to no avail. Or details they're too sick to effective relay by the time they arrive in your ED. 

 

For us, it's a small way to take big steps toward catching up the adult medical community on strides pediatric practitioners have been making for the last 50 years: We've succeeded not only in getting sickle cell babies beyond the critical first five years, but we've now catapulted them into adulthood and find there is little safety net for their treatment and care. 

 

This reality shouldn't exist.

 

You can be the change.  

"Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients."

-HHS Office of Minority Health

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#WarriorAlliesNeeded  #SickleCell911  #SCD911  #AreYouIn

Join forces with SCDAA-MI! Assure Michigan sickle cell patients they're SAFE(R) in your facility than at home because you'll adhere to CDC and NIH guidelines in their care.

Here's what you can do:

  • Assess your ED's readiness to provide guideline-adherent emergency sickle cell care using ASH's approach. (PDF)

  • Let hospital and ED staff know that we're sending patients out with their SCD911 cards. 

  • Contact us to set a face-to-face meeting with your practice or hospital leadership and address any concerns.

  • Give us the opportunity to speak directly with physicians, specialists and other medical professionals so we can discuss the burden of sickle cell, dispel common myths, and offer tips on adhering to the NIH guidelines.

  • Spend some time with us. Meet our patients, their families, our staff and supporters. Put a face to the discussion.

  • Let us know how you'd like to partner. 

For more information, contact Stefanie Worth at the Sickle Cell
Disease Association of America - Michigan Chapter.

“We must ensure that people living with sickle cell disease don’t become collateral damage in the fight against the opioid overdose epidemic.”
 
“During a pain crisis, SCD patients often suffer more than they should because of the complex nature and mechanisms of acute and chronic sickle cell pain, combined with a lack of understanding by health care professionals of the unique needs of these patients. We are committed to protecting their access to the appropriate and safe use of opioids, while developing more effective ways to prevent and treat SCD pain.”
-Adm. Brett Giroir, MD,
HHS Assistant Secretary for Health
Visit our Sickle Cell 911 provider page to learn more about sickle cell and access information about current clinical practice guidelines.
here 

 

Sickle Cell Disease Association of America - Michigan Chapter
18516 James Couzens Fwy, Detroit, MI 48235

(313) 864-4406 OR (800) 842-0973

info@scdaami.org

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