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You know what they say about March, it comes in like a lion and out like a lamb. We started this month fresh off Rare Disease Week. We met incredible rare disease advocates, spoke with policymakers and learned about legislation that is affecting, not only the sickle cell disease community, but the chronic disease community as a whole.

This month is all about policy! We'll recap Rare Disease Week, highlight important legislation and partnerships, and even share a spotlight interview with sickle cell warrior, Kevin Wake. We'll also have some News You Can Use, but first...

A Minute With Marqus

Marqus and the Valentine family attended Rare Disease Day at the Illinois State Capitol on February 28!  The group met with their IL Senator and discussed House Bill 4146 and the challenges faced by sickle cell disease patients. In the midst of the excitement, Marqus had a fiasco that showed no matter how prepared you are, there is no preparing for every sickle cell disease event.
Ashley and Marqus doing some quick studying before speaking with their Illinois representative,
Michael Connelly 

In addition to my sickle cell disease (SCD), I have restrictive lung disease. I developed this condition because of repeat acute chest syndrome, which is a common complication of SCD. Prior to getting diagnosed, I was always short of breath and struggled to fill my lungs completely. I wear my oxygen 24/7 and am only really able to be off oxygen for about 20 minutes before I start losing my breath. 

When I’m at home I have a base floor model oxygen tank. When I leave I carry portable oxygen. I always have the power cord and cigarette lighter cord so I can keep it charged throughout the day. When we traveled to Springfield for Rare Disease Day, I did not have my cigarette lighter cord but figured since I had the wall charger, I would be okay.

 During the lunch break, my oxygen battery died. My dad and I found a floor outlet and plugged the machine in. Nothing happened. My dad took me to a different floor and tried four other plugs. Nothing happened. The actual power cord was broken, and my oxygen machine wouldn't charge. 

(Left to right) Ashley Valentine, Amanda Vassall, Sen. Michael Connelly, Angelo Valentine, Francesca Valentine and Marqus Valentine at Rare Disease Day at the Illinois State Capitol 

As many families do with a chronic disease, we took a breath and began to problem solve in the hallways of the state Capitol. My dad took me to the medic room and hooked me up to their temporary oxygen tank. My dad located multiple emergency rooms on the 3-hour drive home, just in case we would have to stop every 30 minutes for me to get oxygen.

My mom called the oxygen machine vendor, who turned out to be unhelpful in our time of need. My cousin Amanda and sister Ashley began calling  every medical device company within a 30 mile radius of the IL state Capitol. I tried to stay calm so I wouldn't use too much oxygen since I might be without it for a couple of hours.


After a tense hour, Ashley found a medical supply company 0.7 miles from the IL State Capitol who had one power cord left in stock. This was an unexpected headache that showed us to always be prepared for the unexpected. Nevertheless, Rare Disease Day was full of exciting moments. From meeting my Senator and sharing my personal story to meeting other rare disease patients -- I’m excited to come back next year! 

Rare Disease Week Recap

We were honored to be apart of Rare Disease Week in Washington, D.C. and Rare Disease Day Illinois. In DC, sickle cell disease was represented in unprecedented ways with 30+ advocates coming from over 15 states.

We'll discuss S.2465, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018. We'll also share some helpful information about the Senate's Health, Education, Labor & Pensions (HELP) Committee, and touch on IL House Bill 4146 - Patient Rights Transition bill. 
Rare disease advocates in Washington D.C. for Rare Disease Legislative Advocate's annual Rare Disease Week 

Sickle Cell Legislation in the Senate

On February 26, H.R.2410 - Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017 - passed to the Senate during Rare Disease Week. The advocates in DC celebrated during breakfast. See the Sickle Cell Disease Association of America (SCDAA) press release here.

On February 28, 2018, U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC) introduced a companion bill to the Senate, called S.2465 - Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018. The bill is currently in the hands of the HELP Committee. 

The legislation aims to improve health outcomes for people with sickle cell disease. The bill does the following:
  • Reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA) 
  • Authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, academic institutions, and non-profit organizations 
  • Enhance the understanding of the prevalence and distribution of sickle cell disease and its associated health outcomes, complications, and treatments.  
For more information, you can visit Sen. Booker's site here
 

What's the HELP Committee?

S.2465 and HR2410 are now in the hands of the Senate HELP Committee. The HELP committee stands for the Health, Education, Labor & Pensions and began in 1869. The HELP committee is currently ran by 22 Senators, 12 Republican and 10 Democrats, who work together and have a large jurisdiction over the country's health care, employment, retirement and education policies.

While in the Committee, the bills will undergo any necessary changes (i.e., additional information from non-committee experts, comments from relevant executive agencies) and then sent back to the full Senate. Now is the time for the sickle cell community to actively advocate for the bills.

If you are from any of the states in the HELP committee, make sure you reach out to your Senators and offer to help them understand sickle cell disease and ask them to co-sponsor S.2465 and HR2410. 

We've included a graphic of Senators in this Subcommittee. We also listed their names and hyperlinked them to their twitter accounts. Be sure to send them a tweet about the bills!
Michael B. Enzi (WY) 
Richard Burr (NC) 
Susan Collins (ME) 
Bill Cassidy, M.D. (LA)
Todd Young (IN)
Orrin Hatch (UT)
Pat Roberts (KS)
Tim Scott (SC)
Lisa Murkowski (AK)
Lamar Alexander (TN)
Bernie Sanders (VT)
Michael F. Bennet (CO)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)
Tim Kaine (VA)
Maggie  Hassan (NH)
Doug Jones (AL)
Patty Murray (WA)

Sick Cells Joins the Illinois Fair Care Coalition 

Sick Cells joined the Illinois Fair Care Coalition, led by the US Pain Foundation. The US Pain Foundation's mission is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain. Through its Advocacy Network, the foundation created the IL Fair Care Coalition, a grassroots initiative of advocacy and provider groups in support of protecting patients from harmful mid-year coverage changes by insurers.
The advocates will travel to Springfield IL on April 11 to educate policymakers about IL House Bill 4146. The bill would amend the Managed Care Reform and Patients Rights Act to prohibit insurers from making unfair mid-year coverage changes while Illinoisans are locked into their policy. This is also known as non-medical switching

For more information on this bill, check out the Don't Switch Me press release. Be sure to follow Sick Cells on Twitter for more updates on this bill. If you're from Illinois, be sure to retweet our posts!       

Spotlight Interview: Kevin Wake 

Kevin Wake is a sickle cell warrior and advocate from Kansas City, MO. He volunteers for the Uriel E. Owens Sickle Cell Disease Association of the Midwest. The organization provides services for the Kansas City Metro, including MO and KS. Kevin traveled to DC for Rare Disease Week and shared his story with us!
Sick Cells: Why did you attend Rare Disease Week?

Kevin: My interest was peaked from Rosemary Britts in St. Louis asking for attendees for the conference to represent sickle cell.  I was excited to share more about the sickle cell community with others and network with like patients and organizations throughout the week. As I have only been volunteering for our organization for a year, I am eager to become more involved with advocacy and networking to help our association grow and serve my community and give back.  

Sick Cells: Who from Congress did you meet with at Rare Disease Week?

Kevin
I met with Sen. Claire McCaskill and Counsel, Sen. Roy Blunt and Counsel, and Legislative Assistants for Rep. Jason Smith, Rep. Ann Wagner, Rep. Emanuel Cleaver II, and Rep. William Clay.
Kevin shares a picture with another are disease advocate and Senator Roy Blunt (R-MO).
Sick Cells: What did you learn from other rare disease advocates?

Kevin: I learned that although the variety of journeys are different for all of the diseases represented and discussed, we all have a common desire to seek better care, treatments, and political support.

Sick Cells: What was your favorite moment of Rare Disease Week?

Kevin: Speaking with members of Congress and staff regarding rare disease issues and their attentiveness to the issues. Sharing a personal story and relating it to the issues was impactful with everyone that we spoke with. The highlight of the week was to be present in DC when the sickle cell specific bill passed the House (H.R. 2410)!

 
Kevin and his fellow rare disease advocates meet with their members of Congress
Sick Cells: What's something that you'd like people to know about sickle cell disease?

Kevin: First and foremost, sickle cell disease does not define who you are or what you can accomplish! I live with sickle cell and yes the medical challenges are difficult.  Besides the regular pain crises, I have survived other side effects of sickle cell, including two strokes. 

After a 23 year career in pharmaceuticals, I now volunteer with our association to provide support, education, and scholarship opportunities in the community.  I do this for myself, my community, and in the memories of those who have passed away from the disease, including my two brothers (John and David).

Sick Cells: What gives you hope for the future? 

Kevin: I am hopeful that advances are being made for the sickle cell community.  From hearing from other advocates, listening to the speakers at the NIH, and sharing my voice, I am excited that positive outcomes are on the horizon for sickle cell patients.  I am also glad to see so many sickle cell organizations come together for a united voice. There is power in numbers!

 

News You Can Use

American Society for Hematology Action Alert: Contact your Senators in support of sickle cell disease legislation. 

NORD Issues Statement Regarding House Vote on Right to Try: Read NORD's statement on their disappointment with the House of Representatives after the passing of the Right to Try Act.

The dangers of 'nonmedical switching' by insurance companies: Her daughter's epilepsy was under control, but then their insurer stopped covering the drug: 'It’s devastating.'

Racial Bias a Reality for Young Patients with Sickle Cell Disease, Study Shows: Negative experiences with a racial connotation are common among adolescents and young adults with sickle cell disease, Connecticut Children’s Medical Center researchers showed in a recent study.
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