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Two thousand and seventeen has been a year of growth for Sick Cells. Opportunities have presented themselves again and again, and we're setting our team up to achieve as much as we can in the new year.

We've expanded our roles and learned more about the need and what we can do to fulfill our mission to elevate the voices of the sickle cell disease (SCD) community and their stories of resilience. 

In the midst of it all, we always come back to the community. As we transition into 2018, we will always have you in mind. Thank you for a great 2017 - one that's shown us what we, the sickle cell community, are capable of achieving.

Best,
Ashley and Marqus Valentine 

Co-Founders of Sick Cells

Happy Holidays from Sick Cells!

Each December, we take time to reflect on the year. This month, we'll highlight five of our favorite memories from 2017, in no particular order 😊. We'll also have some news you can use. We hope you enjoy reflecting on these memories as much as we did, but first...

A Minute With Marqus...and the Washington Post

Winter is tough for me. The cold makes my sickle pain worse, but I always count on staying positive to get me through. This December, my spirits were lifted when Jenny Gold, from Kaiser Health News (KHN), joined me at my hospital during my exchange transfusion and in my home. We talked about sickle cell, and I felt like she really listened.

Prior to the interview, I was frustrated because our insurance company sent us a letter saying they would not cover any newly FDA-approved drugs for up to 6 months. I guess there are rules in place for safety, but I had been waiting for Endari to come to market for months. Right when I was feeling silenced again, we got word that a reporter was coming to listen to our story. We also learned that we aren't the only ones impacted by insurance companies blocking access to medications and treatments.

On December 26th, KHN released the article entitled "Sickle Cell Patients, Families And Doctors Face A Fight For Everything."  I was so happy that someone heard us. The article touches on a bunch of topics including, the sickle cell bill in Congress, limited federal funding, access issues, a lack of hematologists, and more.

The article spoke with other sickle cell advocates too and really covered the landscape of barriers to care. What I also liked about the article is that she laid out a road map on how to start fixing the problems.

On Thursday morning, my sister Ashley woke me up with a huge grin on her face.  The Washington Post picked up the article too. By the end of the day over 22 other news outlets across the US covered the story. This was bigger than I imagined. We even got a retweet by Rep. Danny Davis!

I'm so grateful to Kaiser Health News, the Sick Cells team for bringing this dream to life, and the entire sickle cell community for working together towards change. As 2017 closes with sickle cell in the national news, we're motivated and ready to bring the momentum into the new year.


Happy New Year, Everyone!

Year in Review

We counted down our favorite memories from 2017. Be sure to click on the pictures. We linked them back to the events. We hope you enjoy reflecting with us.

Number 5 - Walking and Talking

Sick Cells attended four sickle cell walks in 2017. There, we gathered over 70 stories to shed light on some of the challenges people face and share tales of resilience. We kicked things off in Indianapolis at the Martin Center's 21st Annual Sickle Cell 5K Walk/Run. We then headed to Chicago for the Sickle Cell Disease Association of Illinois' 43rd Annual Walk-Bike-Jog-A-Thon.

We met so many warriors and caregivers and featured their stories in our #FacesOfSCD campaign. Check out our
Instagram and Facebook to see highlights.
We had a fantastic time in New York City walking in the Sickle Cell Thalassemia Patient Network's 19th Annual Walk for Sickle Cell Education and Awareness. We ended our adventures in Cleveland for the Sickle Cell*abration and will be sharing stories from that event in January.

Number 4 - Wigs and Sick Cells

We gathered our best wigs for Sick Cells' first annual Wiggin' Out for Sickle Cell fundraiser and awareness event. Tristan, an adult living with sickle cell (hgb SS), and a fashion designer, was the star of the night.
We featured Tristan's clothing line, Divo Star and had an interview with Tristan about his journey with sickle cell disease. We were humbled by the amount of support we received that night. Keep an eye out for our second annual Wiggin' Out for Sickle Cell in 2018!!

Number 3 - Instagram Stars

This year, five individuals took over our Instagram page and shared what their typical day is like living with SCD. Tiahna, Nola, Chantelle, Eda, and Elijah were kind enough to let us delve deeper into their everyday lives. Click their names to check out their stories.

Number 2 - Healthcare Reform

Sick Cells' Artistic Specialist, Samuel Rodgers-Melnick, created two informative videos highlighting policy changes that could adversely affect those living with SCD.
"No Cuts to Medicaid" is a rap video that explains the importance of Medicaid. The video explains the history of Medicaid and how the proposed Better Care Reconciliation Act could have harmed the nearly 70% of the SCD population that rely on Medicaid. The video also pays tribute to late rapper, Prodigy, who passed away from complications of SCD.
No Cuts to Medicaid
No Cuts to Medicaid Video by Samuel Rodgers-Melnick
"What Are Essential Health Benefits" is an educational video that breaks down pieces of the Affordable Care Act (ACA), specifically, essential health benefits (EHBs). This video was in response to the American Health Care Act and shows how removing EHBs could impact insurance for people with SCD.
Essential Health Benefits by Samuel Rodgers-Melnick

Number 1 - Siblings at the FDA

On May 24, 2017 the Food and Drug Administration's (FDA) Oncologic Drugs Advisory Committee (ODAC) voted 10-3 that the overall risk-benefit profile of the drug, Endari, was favorable. On July 7th, the FDA approved Endari, making it the first pediatric sickle cell drug to ever be FDA approved, and the first new SCD drug in 20 years.
Co-founders of Sick Cells, Ashley and Marqus Valentine, testified at the open public hearing for the drug. The two spoke about the powerful impact one less sickle cell crisis can have on those living with sickle cell and their families. Some committee member even quoted the Valentine's presentations as justification for their vote in favor of approving Endari. 

News You Can Use

FDA approves hydroxyurea for pediatrics with sickle cell disease: The FDA granted regular approval to hydroxyurea for pediatric patients from 2 years of age and older with sickle cell anemia with recurrent moderate to severe painful crises.

Coloring Away the Pain: A local Connecticut artist is brightening the holiday season using his coloring books as art therapy for his fellow UConn Health patients living with sickle cell and other diseases.

Prolong Pharmaceuticals Announces Completion of Enrollment in Phase II: Prolong Pharmaceuticals announced that it has completed enrollment in its Phase II study to evaluate SANGUINATE® in the treatment of vaso-occlusive crisis in patients with sickle cell disease. 

 
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