National Health Priority: Sickle Cell Disease

White_House,_Blue_Sky
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

9th Annual Stomp Out Sickle Cell 5K Walk!

 

Register Today for team Heart of Gold of Northern Virginia, Inc  9th Annual Sickle Cell Walk

9th Annual Stomp Out Sickle Cell 5K Walk!

Rain or Shine Event

WHEN:

Saturday, September 12, 2015

8:00 AM – Registration

9:30 AM – Walk Begins

10:30 AM – 12:00 Noon – Post Walk Activities

WHERE:

The race will begin and end at the National Mall

REGISTRATION FEES:

$20.00 Early Bird Registration by June 14, 2015

$25.00 Pre-Registration by August 28, 2015

$10.00 Children 18 and under

$30.00 Walk Day Registration (registration begins at 8:00AM)

For additional information visit us at www.soswalk.org or call the message line at 202.865.8366

All proceeds benefit the Howard University Center for Sickle Cell Disease and Faces of Our Children, Inc.

Quality Improvement Sickle Cell Treatment

Am J Med. 2015 May;128(5):541-4. doi: 10.1016/j.amjmed.2014.11.020. Epub 2014 Dec 9.
Quality improvement process in a sickle cell infusion center.
Whiteman LN1, Lanzkron S2, Stewart RW3, Haywood C Jr4, Strouse JJ3, Feldman L3.
Abstract
BACKGROUND:
The American Pain Society recommends that individuals experiencing sickle cell crisis receive parenteral pain medication within 30 minutes of assessment. We examined factors affecting achievement of this standard at the Johns Hopkins Sickle Cell Infusion Center.
METHODS:
Baseline patient care time intervals and data on variables affecting the ability to achieve the American Pain Society goal were measured. Time to first parenteral opiate administration was modeled using simple and multivariable linear regression.
RESULTS:
Mean time from initial assessment to first dose was initially 41 minutes. Increased nurse to patient ratio decreased time to first dose.
CONCLUSIONS:
Of the factors associated with improved times to first dose, only nurse to patient ratio is amenable to process change, suggesting it as a potential target for future interventions.
Copyright © 2015 Elsevier Inc. All rights reserved.

PMID: 25498167 [PubMed – in process]

Sickle Cell Community Medicare and Medicaid Services

Comments needed from the Sickle Cell Community from Centers for Medicare and Medicaid Services (CMS)

Early in 2015, the American Society for Blood and Marrow Transplantation (ASBMT) and the National Marrow Donor Program (NMDP) submitted a formal request to the Centers for Medicare and Medicaid Services (CMS) for expansion of the current list of diseases for which Hematopoietic Cell Transplant (HCT) is expressly noted as covered and reimbursable. Several disease categories were included in this request, including Myelofibrosis, Sickle Cell Disease, Lymphoma and Multiple Myeloma.

CMS has agreed to open a National Coverage Analysis (NCA) for two of these disease indications now – Sickle Cell Disease and Myelofibrosis – and they have indicated that they will review the remaining indications sequentially. There is a public comment period open from April 30 – May 30, 2015. Information on how to make a comment is described below.

The NMDP and ASBMT submitted a coverage request for these indications due to an identified barrier to care created by the lack of coverage clarity for these disease indications when treating Medicare patients. Currently, Medicare does not indicate that these indications are either covered or non-covered (with the exception of Myeloma) and does not allow Medicare Administrative Contractors (MACs) to provide pre-authorization for HCT. This lack of a clear national coverage decision places the Medicare beneficiary, and the transplant program treating them, at severe financial risk if the MAC denies the reimbursement claim after the procedure is complete. Our recent experience seeking coverage clarity for HCT for Myelodysplastic Syndromes (MDS) has clearly demonstrated this access barrier and the effect of its removal; the clarity of coverage provided through the Medicare study for MDS has allowed patients to receive the care they need. The request letter submitted by our organizations this January provides additional information on the barriers created by this lack of coverage clarity.

While Medicare primarily serves individuals aged 65 years and older, approximately 15% of those covered are younger adults who have a disabling illness, such as sickle cell disease1. The coverage policies set by Medicare are often used as a benchmark reference for coverage by other payers and insurance plans, including state Medicaid programs.

How you can help: Please visit the Medicare website on this topic, read the materials and follow the instructions on how to submit a comment. You can submit a comment on the CMS website. This system does not accept attachments. If you wish to include an attachment please email it to CAGinquiries@cms.hhs.gov. Please include “NCA for SCT/HCT: CAG-00444R” in the subject line of your email.

Links: http://www.cms.gov/medicare-coverage-database/details/nca-tracking-sheet.aspx?NCAId=280&bc=ACAAAAAAAgAAAA%3d%3d&

Submit Comment link http://www.cms.gov/medicare-coverage-database/details/submit-public-comment.aspx?DocID=280&DocType=nca&DocName=Stem+Cell+Transplantation+%28Sickle+Cell+Disease+and+Myelofibrosis%29&NCAId=280&bc=ACAAAAAAAgEAAA%3d%3d&

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.

7th Annual Sickle Cell Disease Educational Briefing

Please join the 7th Annual Sickle Cell Educational Briefing in Annapolis, MD on Tuesday, March 24, 2015 at the Miller Senate Office Building, 11 Bladen Street, 2 West Wing, Annapolis, MD. (See Agenda here)

Meet and visit State Legislators, government relations experts, health care providers and community based organizations as they explain the legislative process and re-introduce the 2014 House Bill entitled “Department of Health and Mental Hygiene – Establishment of a Sickle Cell Disease Outreach Program. The objective of the 2014 House Bill is to establish efforts to bring awareness to Sickle Cell Disease outreach programs.

Light refreshments and lunch will be served!
Transportation will be made available from two (2) locations.
– Howard University Hospital, 2041 Georgia Ave., NW, Washington, DC leaving at approximately 8AM

– Home Depot at 4121 Crain Hwy, Bowie, MD leaving at approximately 8:45AM.

For transportation please RSVP by email no later than Thursday March 19, 2015 to: amason@howard.edu

If you plan to drive, here are the directions. Please let me know by email as soon as possible, if you plan to attend, send email to: amason@howard.edu

DIRECTIONS:

From Washington, DC take US-50 E/New York Ave., NE to exit 24 and merge onto MD-70 S/Rowe Blvd toward Annapolis. Continue on MD-70 to 11 Bladen St., Annapolis, MD 21401.

From Maryland take 495 S/I-95 S take exit 19A to merge onto US-50 toward Annapolis, take exit 24 to merge onto MD-70 S/Rowe Blvd. toward Annapolis. Continue on MD-70 to 11 Bladen St., Annapolis, MD 21401

Click on the Link for parking instructions #18 Senate:
http://msa.maryland.gov/msa/mdmanual/3
7mun/annapolis/html/mapgovbldg.html

Regards,

Angela Mason
Outreach Coordinator
Howard University
Center for Sickle Cell Disease
1840 7th Street, N.W. Suite 202
Washington, DC 20001
Email:amason@howard.edu

Rapper Wordz, beats odds with SCD

Kenneth Borner, also known by his rapper name Wordz, has come a long way since his youth. He was diagnosed with sickle cell anemia when he was 3 months old, and doctors said that he wouldn’t survive past 12. Now the 27-year-old northwest resident said he owes his life to God.
“Every few years, I was told that I only had a short time to live,” Borner said. “I know that me being alive is nothing short of a miracle. Rapping has helped me express myself in ways I never thought I could.”
Besides dealing with his disease, his life had another rough start.
While living in Minnesota, Borner said he was jumped and recruited into a gang when he was in seventh grade and began experimenting with drugs.
Since he couldn’t play sports due to his illness, he found a passion for rapping that same year. He began rapping to the lyrics of Tupac, Lil Wayne and Jay-Z.
A few months later, he began writing his own lyrics.
“Honestly, being in a gang didn’t make me forget about my illness, but once I started rapping, it was like I had something,” Borner said. “I was able to rap about my struggle in life and the things that I’ve been through.”
Borner and his mother moved to Las Vegas in 2004.
After Borner’s mother met pastor Gregory Kirby from Come Unto Me Ministries, Kirby persuaded the then-16-year-old to attend a service.
He also convinced the musician to change his secular rap music into something more meaningful and spiritual.

http://www.reviewjournal.com/entertainment/music/rapper-beats-medical-odds-finds-new-path-spirituality

Show Sickle Cell Patients Love this Valentine’s Day

“Minority Heartdonors, African Americans in particular, have rare compatibility traits in their blood that are unique to the African-American community. Therefore, optimal blood matches for African Americans will come from members with their same ethnic background. However, while African-Americans comprise nearly 13 percent of the US population, less than one percent are blood donors.”

INOVA Minority Donor Outreach & Education

More than 44,000 blood donations are needed daily to meet the critical need for blood supply. While progress in medicine has helped reduced the severity of SCD, donations of blood closely matching that of adults and children with Sickle Cell disease is badly needed to save lives!

One of approximately 80,000 African Americans in the U.S. has SCD. Without the right blood match for a transfusion, immune reactions can develop from a transfusion causing more complications that make future transfusions less effective.

http://www.inova.org/get-involved/blood-donor-services/minority-donor-outreach-education
http://www.inova.org/get-involved/blood-donor-services/index.jsp
If this is your first time donating blood, the link has information and facts to help you better understand the process.

Thank you for saving the life of a Sickle Cell patient and for making a difference in the lives of people who love them.