Post from Sickle Cell Disease Coalition: http://www.scdcoalition.org/get-involved.html
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
- 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 email@example.com to share how they plan to help us transform SCD.
As an Individual
- 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.
- Encourage your Member of Congress to join the Congressional Sickle Cell Disease Caucus.
- 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.
Sickle Cell Conferences and Events
The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.
In 2000, Congress passed the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) establishing National Institutes of Health’s (NIH) National Center on Minority Health and Health Disparities (NCMHD; recently renamed as National Institute on Minority Health and Health Disparities, NIMHD) and charged the center with administering special grant programs focusing on disparities, coordinating minority health disparities research across NIH Institutes, and spearheading the development of an NIH-wide Strategic Plan on health disparities. This effort resulted in unprecedented developments, including 27 NIH Institutes and Centers developing individual strategic agendas to eliminate health disparities. Some of these agendas recognized the importance of disparities in pain care.
At about the same time, the 106th United States Congress passed Title VI, Section 1603, of H.R. 3244 declaring the era starting 2000 as the “Decade of Pain Control and Research”[1,2]. Subsequent high-profile pain initiatives included the Veterans Pain Care Act of 2008 (H.R. 6122), Military Pain Care Act of 2008 (H.R. 5465), and the National Pain Care Policy Act of 2009 (H.R. 756/S.660), provisions from which were included in the Affordable Care Act (ACA) signed in to law by President Obama in March 2010 . These high-profile initiatives placed pain on the national agenda as a major public health problem—one with real social and fiscal consequences. The problem of pain cuts across disease entities and treatment settings. According to recent estimates, 116 million American adults suffer from chronic pain; pain remains the principal reason for which people seek medical care [4,5]. Chronic pain is strongly associated with societal costs measured in terms of disability, poor quality of life, relational problems, lost income and productivity, and higher health care utilization including longer hospital stay, emergency room visits, and unplanned clinic visits. The burden to Americans are reflected in an enormous annual expenditure that ranges $560–$635 billion in direct and indirect costs —a marked increase from the previously estimated cost of $100 billion  and an estimated cost of employees’ chronic pain to businesses of $61 billion . Despite chronic pain’s concerning socioeconomic impact, many aspects of pain care, training, and research remain grossly under-resourced [8,9]. Only less than 1% of the NIH research budget is invested in pain and symptom management research  (Box 1).
Please click on link below for full article!
It’s World Sickle Cell Day, and we’re taking a look at the chronic pain and regular hospitalizations that are the reality for many suffering from sickle cell disease.
ROCHESTER, N.Y. — With sickle cell anemia, it’s never just one kind of pain.
Sometimes it’s a vicious ambush, fast and pulsating. Sometimes it settles in slowly and stays for days, throbbing deep in the bones.
Sometimes the pain is in one spot. Sometimes it’s in three. Sometimes it’s everywhere, hundreds of knives, jabbing and cutting from head to toe, grinding down the body and foreclosing on any hope for the future.
“It’s the worst feeling in the world,” said Stephanie Ramos of Irondequoit. “It’s like your body is attacking its own self. Beating up on its own self. … It’s a horrible disease. I hate it.”
Ramos knows sickle cell anemia well. She was born with it 25 years ago. Doctors told her mother then that she would be lucky to reach adulthood; each birthday was a celebration and, quietly, a foreboding.
What would the next year bring? How many crises, how many trips to the hospital? How much more to be endured, and for how much longer?
It’s a disease of pain, and three years ago, Ramos was exhausted by it.
Wixon: Sickle cell disease can’t hold back Lincoln’s Tafari Witter through sporting, academic endeavors
Tafari Witter is near midcourt, bent forward, tugging on the bottom of his shorts, trying to catch his breath. A substitute is headed to the scorer’s table, but Witter looks over to the sidelines and, with a wave of his hand, indicates he’s not leaving the game.
It might be the only time that Lincoln’s starting point guard doesn’t have his priorities straight.
Witter is a razor-sharp student who is on track to be valedictorian of Lincoln’s Class of 2015. He loves Advanced Placement Calculus BC, is part of the Dallas ISD’s Future Leaders Program and in the fall will attend Texas, where he eventually wants to get a master’s degree in business administration.
NBA point guard Derrick Rose is among the people who inspire him, but so is a star from a very different arena: theoretical physicist Stephen Hawking.
Lincoln coach Cedric Patterson smiles when he hears that.
“He’s a unique kid,” Patterson said.
Witter is so unique, and interesting, and engaging, it’s hard to squeeze his sickle cell disease into the conversation. And he likes it that way.
African American Blood Drive for Sickle Cell Disease Awareness
Although people with sickle cell anemia are always in need of blood donations, we focus on awareness each February – “African American (Black) History Month” and September – “Sickle Cell Month”
Most Blood Donor Centers are by appointment so, please contact them by phone and set up yours. Also, ask them if you can get names and phone numbers of people from your church, job, neighborhood, etc. on a commitment sign up sheet, can you fax the sign up sheet(s) directly to them and if they will call the donors and set up their appointments.
As African Americans, we need African American blood because it is the best match for these patients. If the blood is not a very close match, the patient may reject the transfusion and it could be fatal. Presently, only 5% of African Americans donate blood and it is just not enough. People with the sickle cell trait can not help a person with sickle cell disease, but we can help someone else!
Most children with sickle cell disease will need at least one blood transfusion before the age of 11. For most surgeries (major or minor), a transfusion is necessary and more often today children, teens and adults are receiving a blood transfusion every two to four weeks.
For more information or other ways you can assist, call:
Your Local: Children’s Hospital Sickle Cell Clinic or Sickle Cell Foundation
Re-post from Sickle Cell Information Center website – http://scinfo.org/patients-and-families-other-resources/donate-blood-for-sickle-cell-patients
Blood Donation Web Links
Sickle Cell Information – Why give Blood at Please Give Blood. org http://www.pleasegiveblood.org/sickle.htm
American National Red Cross headquarters in Washington, D.C.
Giving Blood or Giving Bone Marrow
Sickle Cell Information Center Web Links
- Bone Marrow and Stem Cell Transplant Resources
- Stroke Prevention and Trans Cranial Doppler -TCD Screening
- TCD Patient Information for handouts
- Chelation Therapy for Iron Overload
- Visit our Chelation Conference
- Chelation Education Coloring book
- How to do Chelation Therapy
- STARS Clinic for stroke prevention
Dr. M. Dawn Nelson, Ph.D. is an Associate Professor of Audiology at Central Michigan University. She has an 18 year old daughter with Sickle Cell Disease SS. Dr. Nelson is currently directing research studying the association between dizziness/balance and hearing problems and Sickle Cell Disease.
Dr. Nelson attended a Sickle Cell conference at the FDA (February 7, 2014) where many persons with Sickle Cell Disease expressed interest in research related to hearing loss. Since then, she has been contacted by the FDA who reported many individuals from the conference had been contacting FDA, interested in being involved in a research study, which has now been developed. This research survey has received the appropriate University Institutional Review Board approval and is ready for distribution.
All Adults Living with Sickle Cell Disease are strongly encouraged to complete a short survey. Your responses to the survey will help Dr. Nelson to evaluate the correlation between Sickle Cell Disease and dizziness/balance and hearing problems. Dr. Nelson is confident that with enough survey completions from sickle cell patients, she can ultimately make a significant contribution towards a better quality of life for the Sickle Cell community. But your completion of this important survey, as soon as possible, is necessary in order to be successful.
Please find below the email and Facebook links to the survey
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.”
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.
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