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October Updates 

With only two months left in 2018, we can't believe all of the faces we've met, conferences we've attended and progress this resilient community made this year. Sick Cells kept busy this month. We attended five conferences and spoke with legislators.  

This month, we'll share our Giving Tuesday campaign, policy updates and a spotlight interview from Memphis. We'll share some News You Can Use, but first...

A Minute With Marqus

With midterm elections next week, this month, Marqus discusses why it’s so important for those living with sickle cell and other diseases to research candidates and get out to vote. 
Marqus was able to vote early to avoid the crowds on Election Day
Over the years, I’ve been placed on many types of medications. I can only get some complex medicines at certain pharmacies, also known as specialty pharmacies, while others are at our local CVS. Some of these medications, like my iron chelators, haven’t been easy to obtain; however, they have all been incredibly easier to access than my pain medications. 

As many know, our country is in the midst of an opioid epidemic. It's impacting how accessible these drugs are for people who use them for chronic pain, particularly the sickle cell community. I’ve spent the past three weeks calling my insurance company and filling out paperwork to obtain a drug refill to lower my pain. It wasn’t always this way. Sickle cell isn't on the list of conditions that have access to these types of medications without higher scrutiny. I understand that there is an epidemic that we are facing, but in the same vein, not addressing the nuances of the problem is, in my opinion, creating a worse situation.

These struggles led me to think about what it means to be part of the rare disease and chronic disease communities. Earlier this year, I spoke with legislators about sickle cell disease and researched politicians who vote with our community’s best interest at heart. Rare diseases can often be overlooked because they do not impact the masses. I learned this year that while we can work on changing hearts, changing policy and laws offer greater protections to the broader community. I went out and voted to make sure my voice was heard. Getting politicians in office that care about these communities and work with us on these issues is an important first step. 

Giving Tuesday ❤️

On November 27, Sick Cells will participate in Giving Tuesday, a global day of giving fueled by the power of social media and collaboration. 

Here's how Giving Tuesday works: Every dollar raised on Sick Cells' Facebook page will be matched by Facebook. We will have a campaign on Facebook and other social channels to let everyone know how to participate. If you prefer to directly donate to Sick Cells without using Facebook, please feel free to do so
here. A direct donation won't be matched by Facebook, but we'd still be grateful.

Why we do it: Giving Tuesday is the one time a year where Facebook matches the donations. This increase in funding will help us interview more individuals from the SCD community, gather more stories, and execute other exciting plans in the works. 

Keep an eye out for another email on Giving Tuesday with simple instructions on how to give. 
Sick Cells was happy to meet Angela and Joseph in Memphis, Tennessee this past September

Policy Corner: HELP Committee Approves S.2465

On October 11, the Senate had a verbal vote on legislation (S. 2465) sponsored by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) to address issues related to sickle cell disease (SCD). Language in portions of the bill has been broadened to cover data collection and research for “heritable blood disorders, including sickle cell disease” (and not just “sickle cell disease” as originally drafted). This change was made on the Senate version of the bill and needs the House to approve the new language.  
Ashley attended a breakfast with Senators Duckworth and Durbin from IL. While there, she spoke about S.2465 the Sickle Cell Treatment Act.

Act now! Contact your House members and ask them to "consider S. 2465" before the year is over. 

Make sure to thank the co-sponsors of the bill on Twitter! 

Follow Sick Cells on Twitter for the latest policy updates 

Upcoming Conferences

2018 PCORI Annual Meeting - From Evidence to Impact: Putting What Works into Action, October 31-November 2, as part of this year's theme, attendees will discuss important trends in patient-centered outcomes research and connect with colleagues in DC.  

Artia Crossroads, November 7-9, The conference is in Nashville and will explore crucial Medicaid issues from all facets relating to pharmaceuticals, patient access, and patient impact.

Chicago Sickle Cell Conference, November 9, patients will get updates on the state of sickle cell disease, local and regional healthcare initiatives, and hear from the IL patient population. 

Rare Disease Congressional Caucus Briefing, December 4, Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chair Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) invite the public to a lunch briefing.

2019 CMS Quality Conference, January 29 -31, Join nearly 3,300 thought leaders in American health care quality improvement at this premier learning and action event, brought to you by the Centers for Medicare & Medicaid Services. 

National Hispanic Medical Association (NHMA), April 11-14: Call for abstracts for the 23rd Annual NHMA Conference. Topics include technology and health, research, faculty development, women's health, immigrant health, mental health and opioid use. Deadline for abstracts is October 30. Learn more.

 
Do you have any walks or talks you'd like Sick Cells to include in its monthly newsletter? Please send details to avassall@sickcells.org. Please note: Sick Cells sends its newsletter out the last weekday of each month. 

Conference Season 2018!

This year, Sick Cells' president and co-founder, Ashley Valentine, attended the SCDAA National Convention, NORD's Leadership Summit, FDA - ASH Clinical Endpoints meeting, and the BIO Patient Advocacy Summit. The month was busy, but the entire team learned a great deal.
Sick Cells' Artistic Specialist, Samuel Rodgers-Melnick, presented his work on the impact music therapy has on the lives of people with sickle cell disease at SCDAA Nationals in Baltimore, MD. 
SCDAA National Convention - this year, the Sickle Cell Disease of America (SCDAA) focused on celebrating diversity. They welcomed their newest spokeswoman, Jordin Sparks. Click here for more information

NORD Leadership Summit - The National Organization for Rare Disorders hosted a leadership summit. Sick Cells attended a lunch and best practices meeting for member organizations. Sick Cells is the first and only sickle cell disease organization to be NORD members. Click here for more details.

FDA-ASH Clinical Endpoints meeting - the US Food and Drug Administration (FDA) teamed up with the American Society for Hematology (ASH). They hosted a clinical endpoints meeting. The meeting brought together experts in multiple fields of SCD and patients for a discussion about what should be measured during clinical trials. Click here for more details.

NHLBI Sickle Cell in Focus - the National Heart Lung and Blood Institute (NHLBI) hosted their annual research meeting. Click here for more details

BIO Patient and Health Advocacy Summit - Sick Cells attended the BIO Patient summit. There, the team learned about various ways to advocate for health legislation, engage industry partners, and work with federal agencies. Click here for more details
(Top, left to right) BIO Patient and Health Advocacy Summit and NORD Leadership meeting. (Bottom, left to right) Sickle Cell in Focus meeting and FDA-ASH Clinical Endpoints meeting. 

Updates on Rare Disease Week 2019

Travel stipends are open for Rare Disease Week this year! Event registration opens at the end of December. Key dates for 2019 are the following:
  • Sunday, February 24: Documentary Screening
  • Monday, February 25: Legislative Conference
  • Tuesday, February 26: Lobby Day Breakfast & Lobby Day
  • Wednesday, February 27: Rare Disease Congressional Caucus Briefing & Rare Artist Reception
  • Thursday, Feb. 28: NIH Rare Disease Day
For more information about Rare Disease Week and how to get involved with the EveryLife Foundation, check out their website or email Lindsey Cundiff at Lcundiff@everylifefoundation.org. 

Spotlight Interview: Tabatha

In Memphis, Sick Cells met Tabatha, an adult living with sickle cell, hbg SS. Tabatha shared with us what it's like living with SCD as an adult, and how it's impacted her mental health.
Tabatha at Mark Walden Memorial Sickle Cell 5K Run/Walk in Memphis, TN. 

Tabatha: Now that I'm older. The disease is changing. 

Sick Cells: How is it changing?

Tabatha: The places of pain. How my body bounces back, triggers. It's not worse, it's just different. I have to adjust how I treat myself versus when I was a child. Those common areas were hit and they would do certain steps.

Now since I'm older I can't do the same thing because I don't hurt in the same place. I'm triggered by different things. Like before, it would just be the weather. Now it's anxiety, stress, [and] the weather. Certain things will cause a pain crisis. It's completely different.

Sick Cells: I know you can't control the weather and sometimes you can't control anxiety, but how do you keep those things at bay? How do you not stress?


Tabatha: Anxiety particularly can get worse for me if I'm handling too much. So I really have to pace myself and make sure that I'm not stretching myself too thin. Stress on the other hand isn't something that you really can control either I feel. You just have to be very aware of how you handle each particular situation. For me the easiest way for me to distress would be music or talking to a friend or venting, just something to kind of keep me calm. If I can stay calm for an hour, the stress generally decreases on its own. 

Tabatha lives with sickle cell, hemoglobin SS.

Tabatha: I hear a lot of people talk about complications with sickle cell and just staying positive but anxiety/stress, like you said, those things are really hard to control sometimes.

Sick Cells: You're correlating the two, mental health and triggers for sickle cell, I think that it does make sense for people to say you need to stay positive [when dealing with sickle cell disease]. 

Tabatha: It's not necessarily about being positive. It's really technically your outlook. Because I didn't realize my mental health was going to be something that was going to change or progress or even be present dealing with sickle cell disease.

It didn't occur until I was an adult, and I saw things differently. I had to find another approach. That's how I learned but at the same time if you give in, if you think negative thoughts when you're in pain, it'll get worse. I've learned that.

You can't listen to the thoughts that you have when you're in pain because if you stay there that's when depression kicks in. You have to really protect your space mentally and physically. I've learned that as well with this disease. It's rough. 

News You Can Use

Foundation Board Chair Urges Senate to Act on Life-Saving Legislation: On Wednesday, October 3, Mark Dant testified before the Senate HELP Committee about rare diseases.

Legislation & Advocacy Efforts Needed in the Fight Against Sickle Cell Disease: Over the past few years, many advances have been made in the fight against sickle cell disease, a group of inherited red blood cell disorders.

Crizanlizumab Lowers Pain Crises in At-risk Sickle Cell Patients, Ad-hoc Trial Data Show: “I am encouraged that results from this post hoc analysis of SUSTAIN study data found that crizanlizumab could substantially delay or prevent these crises..."
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