National Health Priority: Sickle Cell Disease

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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

Support Your Community on World Sickle Cell Day

Message from CEO Clarissa Pearson

Help us raise money for the Northern Virginia Sickle cell community. World Sickle Day, June 19th. There is power in numbers, so please be a part of ours. Working together helps break the Sickle Cell Cycle.

fundly.com/world-sickle-cell-day

Sickle Cell Patients have to deal with stereotypes such as;
Being viewed as : poverty stricken, drug addicts and under-educated.$ world sickle cell day
We are raising money because it is our goal to provide treatment protocols for all sickle cell patients. The goal of the treatment protocol for each Sickle Cell patients is to ensure that their treatment is the same , each time they visit the hospital. When Doctors provide Sickle Cell Patients with the treatment that works best for them, it not lessens the pain but the amount of time a patient has to stay in the hospital.
Our goal,is to,one day have enough clients and money So,that we are able, to provide support groups inside the hospital, a Sickle Cell Advocate, sickle cell literature on each unit and lastly better training for Doctors and Nurses and the best way to treat start an open dialogue between medical staff and patients on working together to treat their painful crisis.
Sickle Cell Patients spend their lives fighting to survive and then having to fight those whose main goal is to help us to feel better.
The day will come when we are tired of fighting, who will advocate for us then?

Psychological Therapies: Sickle Cell and Pain

Cochrane Database Syst Rev. 2015 May 8;5:CD001916. [Epub ahead of print]
Psychological therapies for sickle cell disease and pain.
Anie KA1, Green J.
Abstract
BACKGROUND:
Sickle cell disease comprises a group of genetic blood disorders. It occurs when the sickle haemoglobin gene is inherited from both parents. The effects of the condition are: varying degrees of anaemia which, if severe, can reduce mobility; a tendency for small blood capillaries to become blocked causing pain in muscle and bone commonly known as ‘crises’; damage to major organs such as the spleen, liver, kidneys, and lungs; and increased vulnerability to severe infections. There are both medical and non-medical complications, and treatment is usually symptomatic and palliative in nature. Psychological interventions for individuals with sickle cell disease might complement current medical treatment, and studies of their efficacy have yielded encouraging results. This is an update of a previously published Cochrane Review.
OBJECTIVES:
To examine the evidence that psychological interventions improve the ability of people with sickle cell disease to cope with their condition.
SEARCH METHODS:
We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, which comprises references identified from comprehensive electronic database searches and the Internet, handsearches of relevant journals and abstract books of conference proceedings.Date of the most recent search of the Group’s Haemoglobinopathies Trials Register: 17 February 2015.
SELECTION CRITERIA:
All randomised or quasi-randomised controlled trials comparing psychological interventions with no (psychological) intervention in people with sickle cell disease.
DATA COLLECTION AND ANALYSIS:
Both authors independently extracted data and assessed the risk of bias of the included studies.
MAIN RESULTS:
Twelve studies were identified in the searches and seven of these were eligible for inclusion in the review. Five studies, involving 260 participants, provided data for analysis. One study showed that cognitive behaviour therapy significantly reduced the affective component of pain (feelings about pain), mean difference -0.99 (95% confidence interval -1.62 to -0.36), but not the sensory component (pain intensity), mean difference 0.00 (95% confidence interval -9.39 to 9.39). One study of family psycho-education was not associated with a reduction in depression. Another study evaluating cognitive behavioural therapy had inconclusive results for the assessment of coping strategies, and showed no difference between groups assessed on health service utilisation. In addition, family home-based cognitive behavioural therapy did not show any difference compared to disease education. One study of patient education on health beliefs showed a significant improvement in attitudes towards health workers, mean difference -4.39 (95% CI -6.45 to -2.33) and medication, mean difference -1.74 (95% CI -2.98 to -0.50). Nonetheless, these results may not apply across all ages, severity of sickle cell disease, types of pain (acute or chronic), or setting.
AUTHORS’ CONCLUSIONS:
Evidence for the efficacy of psychological therapies in sickle cell disease is currently limited. This systematic review has clearly identified the need for well-designed, adequately-powered, multicentre randomised controlled trials assessing the effectiveness of specific interventions in sickle cell disease.
PMID: 25966336 [PubMed – as supplied by publisher]