United to Conquer Sickle Cell Disease

Post from Sickle Cell Disease Coalition: http://www.scdcoalition.org/get-involved.html

Get Involved

People with sickle cell disease (SCD) are afflicted on two fronts – one by having a serious, chronic condition that inflicts pain and other complications – the other by a fragmented system of care.

Even though we know what causes SCD, there is only one approved treatment and no widely available cures. Individuals with SCD suffer from severe pain and infections with devastating complications such as brain injury, stroke, organ damage, and premature death. People with SCD are often unable to access quality care and the treatments they need.

The status quo is unacceptable, and we are setting out to change it.

Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with SCD and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.

The time is now to change the course of this disease. Here’s how you can join us:

As an Organization

  1. Pledge to take on activities or programs that will move the needle on SCD. Advocacy organizations, government agencies, companies, policymakers, and foundations can contact us at coordinator@scdcoalition.org to share how they plan to help us transform SCD.

As an Individual

  1. Spread the word about the need to improve the state of SCD. Share our video and SCD fact images on social media. Use #conquerSCD to highlight our cause.
  2. Encourage your Member of Congress to join the Congressional Sickle Cell Disease Caucus.
  3. Read the report State of Sickle Cell Disease: 2016. This report was compiled by the American Society of Hematology based on the feedback of more than 100 thought leaders and has been endorsed by several organizations.

Calling All Artist with Sickle Cell

Artist with Sickle Cell:

Here is an opportunity to show off your art talents. All sickle cell disease and sickle cell trait individuals, adults, children and families are invited to participate in the online art project.

The artSPEAKS Program is ready to go! We’re excited to start seeing artwork created by children and adults that allows them to share their feelings and thoughts on living with Sickle Cell. Below is a flyer that details the program.

This is an online program in which children with sickle cell and their families can create artwork and then upload it to our website. Each month several pieces of art will be chosen to highlight and the artists will receive a $25 savings bond as well as an invitation to an end of year celebration for all of the highlighted artists.

The art can be uploaded at any time — the “contest” will reset with a new theme each month. People can upload as many pieces of art as they want. Learn more and participate at: www.wepsicklecell.org.
For additional information, questions or inquiries about the art project, please send an email to: www.wepsicklecell.org

 

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Sickle Cell Disease Cured with Stem Cell Transplant

UIC physicians have cured 12 adult patients of sickle cell disease using stem cell transplantation from healthy, tissue-matched siblings.
The transplants at UI Health were the first performed outside the National Institutes of Health campus in Maryland, where the procedure was developed.
Because the technique eliminates the need for chemotherapy to prepare the patient to receive the transplanted cells, it offers the prospect of a cure for tens of thousands of adults with sickle cell disease.
About 90 percent of the approximately 450 patients who have received stem cell transplants for sickle cell disease have been children. Chemotherapy was considered too risky for adult patients, who are often more weakened than children by the disease.
“Adults with sickle cell disease are now living on average until about age 50 with blood transfusions and drugs to help with pain crises, but their quality of life can be very low,” says Damiano Rondelli, chief of hematology/oncology and director of the blood and marrow transplant program at UI Health.
“Now, with this chemotherapy-free transplant, we are curing adults with sickle cell disease, and we see that their quality of life improves vastly within just one month of the transplant,” said Rondelli, Michael Reese professor of hematology in the College of Medicine. “They are able to go back to school, go back to work, and can experience life without pain.”

https://news.uic.edu/cure-for-sickle-cell

<http://news.uic.edu/chicago-woman-cured-of-sickle-cell-disease>

Improving Emergency Care: Free Guidebook SCD

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Anemia word cloud concept

NICHQ, the National Institute for Children’s Health Quality, today announces a new free guidebook: “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care,”

NICHQ, the National Institute for Children’s Health Quality, today announces “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care,”  a step-by-step manual for anyone on the front lines of acute care, from emergency room (ER) doctors and nurses, to hematology specialists. The guide, launched on World Sickle Cell Day, is the result of a five-year collaboration between 15 multidisciplinary health care provider teams nationwide. Throughout the process, teams traded lessons learned and best practices for improving treatment for adults and children with sickle cell disease (SCD) in the ER.
An inherited red blood disorder, SCD is a chronic illness characterized by anemia and unbearable bouts of pain, so providing relief quickly is crucial to treatment. This incurable disease can lead to declining health, poor quality of life and early mortality. NICHQ Strategic Project Director Dr. Suzette Oyeku, said, “Sickle cell disease patients wait in excruciating pain longer than they have to for treatment. Guidelines do exist, but they have not been consistently implemented, particularly in acute care settings. Our guide was designed to help providers bridge this gap.”
NICHQ’s SCD work was funded by The U.S. Health Resources and Services Administration (HRSA) which oversees the SCD Treatment Demonstration Program and the SCD Newborn Screening Program. As lead facilitator for the programs, NICHQ was responsible for organizing and reporting on meetings; collecting, analyzing and distributing best practice data; and serving as the liaison between HRSA and the teams. The two projects yielded many results in improving care for SCD patients in the ER. These included a reduction in the wait time for evaluation by 69 percent and a 29 percent improvement in the time between triage and receiving pain medication. One of the most significant outputs of the teams’ extensive work is “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care.” The online publication offers best practice findings such as standardized order sets, a recommendation to consider using intranasal fentanyl and a color-coded, full body chart, reviewed by patients and doctors, as a standard pain assessment tool.
According to HRSA Project Officer Dr. E. Donnell Ivy, NICHQ and the Treatment Demonstration and Newborn Screening program grantees have pulled together an excellent resource. He said, “On World Sickle Cell Day and as Sickle Cell Awareness Month approaches, the timing for sharing this comprehensive guide could not be better. We congratulate NICHQ and all of our grantees on advancing the quality of care for these patients. As a result of their work, thousands of patients, from coast to coast, will receive better treatment in the ER.”

National Health Priority: Sickle Cell Disease

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Description White House, Blue Sky.jpg en.wikipedia.org

09/10/2015

The White House

OFFICIAL WHITE HOUSE RESPONSE TO

Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs.

A Response to Your Petition on Sickle Cell Disease
As you know, sickle cell disease (SCD) is a common inherited blood disorder that affects an estimated 90,000 to 100,000 Americans, and can lead to lifelong disabilities and reduced average life expectancy. The disease disproportionately affects people of color, and occurs among roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births.

SCD is a major public health concern that warrants ongoing federal support, and is a priority for President Obama and his Administration.

That’s why the Department of Health and Human Services (HHS) is actively engaged in a number of efforts to help do the following:

Better identify individuals with SCD
Improve access to care
Gather data about best practices in order to improve treatment therapies
Raise awareness of SCD
Promote health education about SCD
Search for a cure through ongoing research efforts
HHS is developing Healthy People 2020 objectives to support SCD-related health promotion and disease intervention initiatives across the federal government. To evaluate progress in meeting these objectives and better inform future federally funded research and prevention efforts, the Department is developing a pilot national surveillance system to collect data to better understand characteristics of those affected by SCD, what complications these individuals are experiencing, and what gaps exist in meeting their health needs.

Through the Health Resources and Services Administration’s SCD Treatment and Newborn Screening Programs, HHS is also expanding access to care for individuals with SCD by increasing the number of providers treating patients with SCD who are knowledgeable about current treatment options and identifying those with the disease sooner so that they can begin receiving recommended treatments. HHS is also increasing patient education and outreach efforts for individuals with SCD or who are carriers of the sickle cell gene mutation to prevent infections and ensure needed medical care is received. You can read a recent report detailing these efforts here.

The Centers for Disease Control and Prevention (CDC) has additional materials to raise awareness of SCD among teachers, non-medical professionals, and other members of the general public — all of which you can find online here.

We’re also investing in critical research on SCD at institutions across the country. The National Institutes of Health (NIH) funds research focused on increasing the effective use of known SCD therapies, discovering new treatment options, ameliorating complications, and ultimately finding a cure. In September, NIH released the first systematic and evidence-based report to assist clinicians in delivering care to people living with SCD.

Finally, the CDC has an agency-wide working group to explore opportunities to address unmet needs in SCD research, surveillance, and health education. Through the efforts of this working group and consultation across agencies within HHS, the Department will consider other ways in which it can strengthen its current activities regarding SCD.

We still have much more work to do, but we will continue to make progress — not just to help the tens of thousands of Americans currently living with sickle cell disease, but to ensure that one day, we have a generation where the disease is only something that’s read about in history books.

Thank you for your adding your name to this petition, and for your involvement in the We the People platform.

Follow @WeThePeople on Twitter all day long for a series of Q+As with various Administration officials on the petition responses we released today.

Tell us what you think about this response and We the People.

https://www.whitehouse.gov/feedback-petitions

PhenX Toolkit Seeks Comments

The Toolkit provides standard measures related to complex diseases like sickle cell disease, phenotypic traits and environmental exposures. Use of PhenX measures facilitates combining data from a variety of studies, and makes it easy for investigators to expand a study design beyond the primary research focus. All Toolkit content is available to the public at no cost.

Information about the project is available at www.phenx.org The National Human Genome Research Institute (NHGRI) awarded RTI International a four-year cooperative agreement to expand and enhance the PhenX Toolkit at https://www.phenxtoolkit.org/

An important aim of this grant is to review the measures in the 21 research domains after receiving input from the scientific community.

Please take a few minutes to review the measures in these PhenX domains: Demographics, Environmental Exposures, and Social Environments. Your rating (number of stars) should reflect how useful this protocol is to your work and its relevance to the PhenX Toolkit. We tried to make it easy for you to rate the measures you are familiar with; you do not have to rate all of them. Please click Review PhenX Toolkit Measures to rate and comment on these measures.