Copy
View this email in your browser

Hold on to Your Wigs!

Can you believe we're more than halfway done with 2018? Shout out to all the resilient warriors who are also students, mothers, graduates, advocates or educators. We're happy we get to meet and interact with you each day.

This month we'll recap our 2nd Annual Wiggin' Out event. We'll also give you an update on policy, Walks and Talks you can attend and a spotlight interview. We'll of course have some News You Can Use, but first...

A Minute With Marqus

In the US, the estimated annual cost of SCD-related hospitalizations is $488 million. On an individual level, it’s estimated that a person with SCD will spend about $460,000 or more over their lifetime for care. As Marqus approaches August 6 for his hip replacement, he reflects on the cost he's spent leading up to the surgical day.
The day is finally here. I’m scheduled to have my first hip replacement on August 6th. I say first, because at my age and with my severity of sickle cell, I'm lucky that this is my first and only hip replacement in my life. It’s been a year in the making. This month, though, we realized that we've spent a lot of money on this prep. We hit our max out of pocket already!

For those that don't know a lot about insurance, that means that once we pay $10,000 out of pocket, then our insurance covers everything at 100 percent. It usually takes us until November. This month, I’ve had 15 doctors appointments with specialist to clear each part of my body. Each visit cost us a copay ranging between $38-50 each. We paid about $600 in co-pays so far. 


Most doctor’s appointments have an additional cost associated with them. Any special test, procedures, or new equipment cost an additional price. For example, I went to the cardiologist this month and then had to return for a stress test to make sure my heart was healthy. The copay cost $40 and so was the test, totaling $80. 
On top of all the appointments, I still have my monthly cost of medications. Everyday I take 12 different medications. With my insurance, I pay about $500 a month for everything. To get all of the medications, my dad has to drive to two different pharmacies outside of my hospital. My pain medications are at one pharmacy. My general medications are at CVS, and the Endari and JadeNu are mail order. In short, my dad does a lot of driving for me. 

Some of the indirect cost are things like gas and time missed on work. My parents or Uber take me to all of my appointments. In July, my dad made 24 trips to doctor appointments and around 20 trips to pharmacies because frequently the medications aren’t ready when we go. In July, he spent a total of $150 for gas.

 
Marqus checking out his future hip!
My parents take great care of me. For the major appointments, my mom stays home from work to attend. My dad is an electrician and doesn’t receive paid sick days. So this month and last, he accepted a layoff to drive me around to hospital visits. He makes a great Marqus Chauffeur! When you total the hours they’ve missed in July to prepare for this surgery, my dad is at a full 160 hours, and my mom is at 30 hours. Things like gas and days missed from work do not get reimbursed.

It's been a long time coming, though. I can't wait for surgery day. 
Marqus at his pre-operation nurse visit for his total hip replacement in August

Wigs On For the Cause!

On July 14, Sick Cells celebrated its 2nd Annual Wiggin' Out for Sickle Cell event at the Dirty Goose in Washington DC. The team received donations from local businesses and enjoyed performances by DC's best drag queens. The event raised $2,000 and created more advocates for SCD. 
(left) Miss Venus Vahalla, Chaffaun, and Tristan Lee pose. (Right) Wiggin' Out's featured fashion designer
The District of Columbia has one of the largest sickle cell populations in the United States. So, we intentionally held Wiggin Out in DC to make a difference and educate the local community. All while wearing fun wigs of all colors, shapes and sizes - and having a fabulous time!
Sick Cells also invited DC locals to come learn about SCD from Tristan Lee - an adult fashion designer living with sickle cell. 
Thanks to everyone who attended this year's event! Your generous donations do not go unnoticed. We cannot wait to grow this tradition in other areas. 
Donate

Spotlight Interview: Tashena Altman

Sick Cells had the pleasure of chatting with Tashena Altman, 30, at the Chicago walk this past June. Tashena herself has sickle cell hgb SC, but also cares for her son that lives with sickle cell and spinal muscular atrophy (SMA). From a young age, she was enrolled in clinical trials, and she shared with her experience with us.
Tashena, 30, at the Sickle Cell Disease Association of Illinois' 44th Annual Walk/Jog/Bike -a-Thon
Sick Cells: Do you know about clinical trials? What's been your experience?

Tashena: My mom had us in the clinical trial when we were younger, when they were doing a penicillin. So we did that trial. That's actually the reason why I let my son be in a trial, because I was in a trial. But his actually worked. It's like somewhat of a cure for Spinal Muscular Atrophy (SMA). Because they didn't have anything for it, but like kids are walking now off of it. Those kids don't even walk with SMA.

Sick Cells: Some people are for it [clinical trials], some people are against it. Or maybe afraid of it? If you were to encourage somebody to check [clinical trials] out, what would you say to them?

Tashena: It really depends...I wanted to do clinical trials, but I'm scared because my health isn't that good, and I don't want to make myself sick or make anything bad happen. I would just say do research, I wouldn't be scared to try it. The only thing to happen is nothing. So it's like, I feel like it's worth trying. That's the only way that we're going to fix it or be able to cure it, is if someone tries. 
Tashena being interviewed by Kelly Hawthorne, Sick Cells' Chief Communications Officer

Upcoming Walks

Sick Cells is continuing its #FacesOfSCD storytelling photo series this summer. Sick Cells will attend the 5th Annual Walk With the Stars & Move-a-thon on August 18 in Baltimore. If you're going to be in or around Baltimore, MD, stop by and share your story! If you are interested in volunteering, email us. 

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. 
Sick Cells Co-founder Ashley, helps to warm up sickle cell warrior, Vanessa. 
Sick Cells is also excited to announce we'll be returning to Central Park in NYC to join the 20th Annual Walk for Sickle Cell Education and Awareness on September 15. Register here

Sick Cells will also attend the Sickle Cell*abration of Life 2018 at Seidman Cancer Center in Cleveland, Ohio on Saturday September 22, 2018 from 2-4 p.m. We can't wait to see you, Cleveland! 
Sick Cells interviewing at the SCD Association of Illinois' 44th Annual Walk-Jog-Bike-A-Thon 

Upcoming Conferences

Annual Sickle Cell Disease Clinical Research Meetings, August 13-15, A three day meeting that provides a yearly forum for investigators, practitioners, and interested health care providers to discuss the process of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of SCD, and interact with other investigators and NHLBI Program Staff in an informal setting.

Annual Sickle Cell Disease Therapeutics Conference (SCDTC), September 13, A forum to discuss the latest advancements and future trends for treating patients with sickle cell disease.

Registration for 2018 Rare Disease Scientific Workshop Now Open, September 13, The Foundation will convene its tenth annual Rare Disease Scientific Workshop to conceptualize an FDA Rare Disease Center of Excellence in Washington, DC. The conference is free to attend, but participants must register in advance.

Sickle Cell in Focus (SCiF) Conference, October 22-23, SCiF is a two-day, intensive, educational update on sickle cell disease in Bethesda, MD.

Rare Diseases and Orphan Products Breakthrough Summit, October 15-16, the NORD Rare Summit in Washington DC provides a unique opportunity to hear from the experts and join the conversation on issues of unprecedented importance.
 
2018 BIO Patient & Health Advocacy Summit, October 25-26, this event in Washington DC convenes patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices.

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.

Policy Corner: HELP Committee Approves S.2465

We've received an important update on S.2465 from Stephanie Kaplan, Senior Manager of Government Relations and Public Health at American Society of Hematology.

On July 25, the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously approved legislation (S. 2465) sponsored by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) to address issues related to sickle cell disease (SCD). 

This important legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Services Administration (HRSA) and authorizes the federal government to award data collection grants to states, academic institutions, and non-profit organizations with the goal of better understanding the prevalence and distribution of heritable blood disorders, including SCD, and the associated health outcomes and complications of these disorders.  

Although 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), Senators Scott and Booker, and a number of members of the HELP Committee, have noted that the intended focus of the programs authorized in the bill remains on SCD.


There's still plenty of work to do before the bill becomes law. We encourage everyone to call their Senators. Here, listed under 'Other Resources', are valuable resources to help contact your Senators. 

News You Can Use

Minnesota criticized for lack of sickle cell disease care: Advocates for people with sickle cell disease are criticizing Minnesota’s lack of care, saying the number of related deaths in the state is unclear because officials don’t track adult cases.

Young Adult Representatives of RDLA (YARR): Calling all members of the sickle cell community roughly between the ages of 13-25 that are interested in expanding your advocacy skills -- The Young Adult Representatives of RDLA (YARR) is accepting applications now. Register here.

RDLA is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government. RDLA provides free resources for successful grassroots advocacy.


7-year-old Matteson girl goes to Washington to lobby for fight against sickle cell disease: Olivia Shorter, 7, was in Washington DC to urge lawmakers to help children, like her, who have sickle cell disease.
Copyright © 2018 Sick Cells, All rights reserved.

We'd love to hear your feedback.  Send us a note at our email address below. 
Our email address is:

avalentine@sickcells.org
Want to change how you receive these emails?
You can update 
your preferences or unsubscribe from this list






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Sick Cells · 1316 13th Street NW · Washington, DC 20005 · USA

Email Marketing Powered by Mailchimp