Every year, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act must be renewed, and on July 25, 2018, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) approved bill S. 2465 to go to the full Senate for consideration and approval.
Sponsored by Reps. Cory Booker and Tim Scott, this companion bill to HR 2410 will allow the Department of Health and Human Services to study SCD (and other genetic blood disorders) and gain a more accurate picture of how many people are truly affected. According to a press release from the Senate HELP committee, we know about 100,000 Americans are sickle cell warriors. However, there may actually be more -- there's not yet enough data to know. In addition to collecting more of this data, the bill will also encourage the development and implementation of more treatments to help patients with these disorders live healthier lives.
Before this bill can become law, though, it must be passed by the Senate, the house, and then, signed into law by the president. To help ensure all these milestones are successful, it's imperative to contact your senators repeatedly. Click here to find out who your reps are, and then, call them, e-mail them, tweet them -- let them know you will hold them accountable.
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Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law
July 31, 2018 by AndreaCategory: Chronic Health Conditions in Children and Adults, Sickle Cell Disease, Sickle Cell Education Tags: senate help committee, sickle cell, Sickle Cell Disease Research Surveillance Prevention and Treatment Act | Comments Off on Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law
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Phi Beta Sigma and the SCDAA Have Partnered to Raise Awareness and Funds for Sickle Cell Disease
July 17, 2018 by Andrea
Photo for illustrative purposes only
A couple of months ago, The Links Foundation, Inc. donated $1 million specifically for sickle cell research to St. Jude Children's Research Hospital. And just 10 days ago, another prominent Black nonprofit -- this time a Greek organization -- announced its partnership with the Sickle Cell Disease Association of America.
The members of Phi Beta Sigma Fraternity, Inc. see themselves as "a brotherhood of conscious men actively serving our communities," and as part of that this year, they'll be working alongside the SCDAA to help raise awareness of sickle cell disease and its trait and help raise funds for related research.
Their first official act will be joining in on the SCDAA's 5th Annual National Sickle Cell Walk with the Stars & Move-a-Thon on August 18, 2018 at Baltimore's Canton Waterfont Park. After that, Phi Beta Sigma will continue its partnership by helping organize bone marrow and blood drives, as well as educating their communities and assisting with fundraising.
"Phi Beta Sigma understands the deep impact that sickle cell disease has on our communities," the frat's international president Michael Cristal said in a press release on sicklecelldisease.org. "We are excited to lend our efforts to raising funds for this important cause."
The Walk/Move-a-Thon is open to everyone, so if you live in the Baltimore area and you'd like to participate, sign up to do so here.Category: Fundraising, Sickle Cell Education Tags: phi beta sigma, SCDAA, sickle cell | Comments Off on Phi Beta Sigma and the SCDAA Have Partnered to Raise Awareness and Funds for Sickle Cell Disease
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Opioids, Sickle Cell, and the Latest Win on the Issue
July 10, 2018 by Andrea
Instead of improving over the years, the stigma associated with sickle cell warriors and pain medications has only gotten worse -- especially with the onset of this administration's focus on what they term the "opioid epidemic." Warriors are often dismissed as addicts and told their pain can't possibly be as bad as they say it is.
Recently, though, one Virginia man scored a win for the thousands of people living with sickle cell in his state. Yesterday (July 8, 2018), the Richmond Free Press reported that on June 15, Virginia's governor, Ralph S. Northam, approved a regulation change allowing doctors to prescribe sickle cell patients higher dosages of opioids without having to provide justification for such prescriptions. This change, which was campaigned for by George H. Carter, a Virginian who lives with SCD and is chief lobbyist for the nonprofit Sickle Cell – Virginia, has been a long time coming.
According to the paper, Carter took his fight to the General Assembly and the Virginia Legistlative Black Caucus first, but neither would help him. Finally, he approached the state Board of Medicine, and this past February, they voted 12-6 to add sickle cell to the list of opioid regulation exemptions.
"If you haven't experienced the pain, you just cannot imagine what it is like," Carter told the Free Press.
Read the entire article here.Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: opioids, sickle cell | Comments Off on Opioids, Sickle Cell, and the Latest Win on the Issue
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5 Summer Reads for When It’s Too Hot to Actually be at the Beach
July 3, 2018 by AndreaEven when the weather makes it too unbearable -- and too much of a crisis risk -- to bask in a chair seaside, you can still enjoy all the latest beach reads from the comfort of your air conditioning. Put your meditation app on calming beach waves, and settle in with a mocktail and one of these page-turners:
1) Children of Blood and Bone by Tomi Adeyemi, Barnes & Noble ($12.19)
If you love all things Octavia Butler, you've got to grab your copy of Tomi Adeyemi's debut novel. It follows the character Zélie Adebola, as she seeks to avenge the death of her mother and restore magic to her homeland.
Photo courtesy of publisher
2) Then She Was Gone by Lisa Jewell, Barnes & Noble ($19.45)
This one goes out to all the mystery/thriller lovers out there. A tale of a mother's search for her long-missing daughter, this plot-twisty novel is a must-have for your summer reads list.
Photo courtesy of publisher
3) An American Marriage by Tayari Jones, Books-A-Million ($17.24)
Of course, no summer reads list is quite complete without at least one Oprah's Book Club pick. And in this one, two newlyweds have their lives changed in an instant when one of them is sent to prison for a crime he didn't commit. He returns home five years later, but can he and his wife really just pick up where they left off?
Photo courtesy of publisher
4) Well, That Escalated Quickly by Franchesca Ramsey, Target ($22.90)
A self-proclaimed "accidental activist," Franchesca uses humor to discuss everything from race to gender to social justice to identity and everything in between.
Photo courtesy of publisher
5) The Woman In Cabin 10 by Ruth Ware, Barnes & Noble ($9.89)
Lo thought a dream assignment aboard a luxury cruise ship would be just what she needed to level up at the travel magazine where she works. But when a woman on board goes missing -- and all that surrounds her is water -- Lo's dream quickly turns into a nightmare.
Photo courtesy of publisher
Category: Self-Care, Sickle Cell Disease Tags: beach reads, sickle cell, summer reads | Comments Off on 5 Summer Reads for When It’s Too Hot to Actually be at the Beach
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There’s Finally a Podcast Dedicated to Sickle Cell
June 26, 2018 by Andreahttps://www.instagram.com/p/BkTGTamA3im/?taken-by=sicklecell101
Two years ago, we discussed the lack of podcasts centered on sickle cell disease and wrote about how launching your very own is a great way to raise awareness of SCD all year long. A couple years later, and there's still a void on the this subject in this space. But, as of this past World Sickle Cell Day, one group set out to help change that.
Sickle Cell 101, a nonprofit organization that focuses on sickle cell education through social media, launched their podcast on June 19, 2018. Hosted by Cass and Stephen -- a sickle cell warrior and founder of Sickle Cell 101 and a pharmacist and sickle cell trait carrier, respectively -- the inaugural episode covers the current state of sickle cell across the globe and touches on topics, such as what sickle cell is and how it is inherited, how sickle cell warriors can best take care of themselves, the stigma associated with warriors and pain medications, the misconception some have that sickle cell is witchcraft, and more.
As an organization, Sickle Cell 101 also gives out annual Sickle Cell Advocates of the Year awards and hosts an HBCU sickle cell college tour. We're not sure how often new episodes of their podcast will air, but be sure to follow them on Twitter and Instagram for updates.Category: Sickle Cell Education Tags: sickle cell, sickle cell 101, sickle cell podcast | Comments Off on There’s Finally a Podcast Dedicated to Sickle Cell
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The FDA Wants to Hear from You. Here’s How to Make That Happen.
June 12, 2018 by Andrea
Last month, the Food and Drug Administration (FDA) announced it would be holding a public meeting all about chronic pain, in hopes of learning, directly from people living with chronic pain, more about what patients go through and how treatment is given. As the date draws nearer -- the event will be held on July 9, 2018 from 10 a.m. to 4 p.m. at the FDA's White Oak Campus in Silver Spring, Maryland -- we wanted to encourage sickle cell warriors to make their voices heard, whether in person or via letter.
It's no secret that sickle cell warriors, a large number of whom are of African descent, face stigma and prejudices when it comes to securing the medications needed for their severe pain. Many times, doctors will make assumptions that the person seeking help is an addict and refuse to believe their pain is as intense as they say. Chart notes reflecting this can also potentially affect a person's future treatment, as well. While there have been studies published, articles written, and even TV shows dedicated to calling out such ill treatment of this specific group of people, the prejudices continue. The best way to help push the medical community toward necessary change as a whole is to speak out -- and never stop until that change is made.
According to the announcement, the "FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressents; other medications; and non-pharmacologic interventions or therapies." If you can't make it to next month's meeting in person, the FDA wil be accepting written comments (e-mail or regular mail) about your experiences with chronic pain through September 10, 2018. You can find details on sending your submission here.Category: Resources for Parents, Sickle Cell Disease Tags: chronic pain, FDA, sickle cell | Comments Off on The FDA Wants to Hear from You. Here’s How to Make That Happen.
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Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling
May 28, 2018 by Andrea
Photo for illustrative purposes only
We talk about the stigmatization of sickle cell here in the U.S., especially when it comes to doctors using biased language in their patient notes, which can affect the quality of a person's healthcare long-term. But in some countries, such as Cameroon, such stigma can lead to death.
As reported by Reuters, many people in Cameroon still hold the belief that children with sickle cell are actually witches or sorcerers who's mission is to destroy the families they were born into. Some are abandoned by their parents, some are purposefully neglected, and, in extreme cases, some are killed. One woman interviewed for the Reuters article describes suffocating her 5-year-old son last year because she was told his illness was mystical and would ruin her life. "I killed my child because he was going to die anyway," she told the news service. "Before, he was suffering greatly. Now, he is at peace."
This isn't a new development for the country, but since this belief still persists, a lot more must be done to raise awareness and educate communities there, especially since Cameroon has a population of about 400,000 sickle cell warriors. In past years, Cameroon health officials have encouraged genotype testing before marriage and offered some free or reduced treatment costs. However, those living there with SCD now feel that to truly have a chance at ending this disease, genotype tests should be free -- and mandatory.
You, too, can help sickle cell warriors living in Cameroon. Perhaps, in honor of the upcoming World Sickle Cell Day, you can donate to help equip a sickle cell lab in Cameroon via GlobalGiving.
Read the full article here.Category: Chronic Health Conditions in Children, Sickle Cell Disease Tags: Cameroon, sickle cell | Comments Off on Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling
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Houston Teen Starts Nonprofit to Raise Awareness for Sickle Cell Disease
May 15, 2018 by Andrea
Photo: haileykisses/Instagram
Hailey Fields is more proof that when it comes to making a difference in the world, it doesn't matter how old you are. Only 13, this eighth grader already has a multitude of accomplishments under her belt -- model, actress, beauty entrepreneur, and nonprofit CEO. The latter was inspired by her grandmother Gale, who passed away from complications of sickle cell at the age of 64, just five months ago.
Covered By The Blood, Inc., Hailey's nonprofit, was established in 2016 with the goal of helping to raise awareness of SCD and helping to assist families of sickle cell warriors with financial assistance as needed. "Not a lot of people know what sickle cell is," Hailey said in a recent interview with Houston Life. "I know I didn't know about it, so I'm like, I wanna teach other people to know about it."
Before launching, Hailey did her research on sickle cell and on what it takes to start a nonprofit, and then, approached her mom with a business plan. Her mom invested in Hailey's dream, and since then, through blood drives, donations, and the help of volunteers, the Covered By The Blood crew has been able to support families in their community impacted by sickle cell. Profits from her Hailey Kisses lipsticks and glosses line also go toward her nonprofit.
Learn more about Hailey and Covered By The Blood here, and if you'd like to join their team, sign up to donate, volunteer, or host a blood drive.Category: Sickle Cell Disease, Sickle Cell Education Tags: Covered By The Blood, Hailey Fields, sickle cell | Comments Off on Houston Teen Starts Nonprofit to Raise Awareness for Sickle Cell Disease
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The Links, Inc. Donates $1 Million to St. Jude for Sickle Cell Research
May 8, 2018 by Andrea
Photo by St. Jude Children's Research Hospital
Most of us know St. Jude Children's Research Hospital as the place that treats pediatric cancer patients at no charge to the family. But did you know the doctors at this hospital also treat kids with sickle cell (and other life-threatening diseases)? And they do it all through the donations they receive -- their latest from The Links Foundation, Inc. (the philanthropic segment of The Links, Inc., a nonprofit organization of professional Black women) of $1 million is designated specifically for sickle cell research.
In a press release published on May 3, St. Jude reports that the donation called the Legacy Grant will go toward ensuring the progresson of three SCD programs: studies on how sickle cell affects cognitive abilities, a counseling initiative for parents of babies with sickle cell in Nigeria, and the development of a mobile app to help warriors practice self-care and disease literacy. "Advancing the care, and ultimately, the cure for sickle cell disease has been at the heart of St. Jude since the hospital opened," Dr. James R. Downing, president and CEO of the hospital said in the press release.
This grant is somewhat of a full-circle moment for the research hospital, as the very first grant it ever received back in 1958 -- four years before the hospital was even built -- was also for sickle cell disease research. "St. Jude is an organization whose mission and vision align with ours ... and we greatly admire its deep and longstanding commitment to children with life-threatening diseases like sickle cell disease," Dr. Glenda Newell-Harris, president of The Links stated in the same release.Find out more details here.
Category: Research, Sickle Cell Disease Tags: sickle cell, St. Jude, The Links | Comments Off on The Links, Inc. Donates $1 Million to St. Jude for Sickle Cell Research
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5 Ways to Unwind When Your Only Have a Few Minutes
April 24, 2018 by Andrea
You already know how much we believe in self-care and relaxation. It helps reduce stress, which in turn can lessen the occurrence of a crisis and the complications that come with it. But what if you don't have an entire day -- or even an hour -- to devote to such calming techniques? No worries, we're bringing you a whole host of ways to unwind, even if you only have a few minutes.
1. Treat yourself to a scalp massage.
When you don't have the time, or the budget, for a full-body massage, grab a scalp massager, and spend five to ten minutes stimulating all those nerve endings on your head. Your brain will receive messages of relaxation and enjoyment, and your well-being will thank you.
2. Get your cuddles.
Whether it's with your S.O., your child, or your pet, cuddling is a great way to calm any stressors going on in your life. In fact, cuddling releases oxytocin into your body and can even help lower your blood pressure, making you feel nice and relaxed.
3. Laugh out loud.
As the old adage goes, "Laughter is the best medicine." It's more than just an empty platitude, too. Laughing can actually relax your muscles, release endorphins, dismiss feelings of anxiety, and more. So, use your few minutes to watch an amusing meme or video, listen to your favorite funny radio host, or call up a friend who always makes you chuckle.
4. Bask in the sun.
Escape the dimness and stress-inducing environment of your workplace by stepping outside for a little while. Just feeling the warmth and light of the sun on your skin can boost your mood for the better.
5. Listen to some music.
There's music to match any mood you're feeling or trying to feel, and when your brain hears a certain style of song, it reacts accordingly. For example, a fast one with sharp lyrics can help you address and move on from anger; an upbeat tune can send messages of happiness to your brain; and smooth jazz tracks can elicit feelings of calmness.Category: Self-Care, Sickle Cell Disease Tags: relaxation, sickle cell, stress relief | Comments Off on 5 Ways to Unwind When Your Only Have a Few Minutes
