PDSA E-News: June 30, 2015



Gaylord Opryland Hotel Atrium


If you have not yet registered for ITP Conference 2015, July 24-26 at the Gaylord Opryland hotel in Nashville, Tennessee, NOW IS THE TIME!  The deadline for Early Registration and discounted hotel room reservations is July 1st!





FDA Approves Promacta® Treatment Option for ITP in Children

PromactaThe US Food and Drug Administration (FDA) has approved eltrombopag (Promacta®) for the treatment of chronic ITP in children 6 years and older who have responded poorly to corticosteroids, immunoglobulins or splenectomy. In 2008 eltrombopag was approved for adult chronic ITP patients (age 18 and older). The FDA approval for use in children was based on evidence from two clinical trials—the PETIT and PETIT2 studies. The treatment goal in children with chronic ITP is to maintain a safe platelet count that stops or prevents bleeding. The commonly available and most often used ITP therapies—corticosteroids and intravenous immunoglobulin (IVIG)—often have side effects that are difficult to tolerate in children with ITP.

PDSA Medical Advisor Dr. James Bussel, a professor of pediatrics at Weill Cornell Medical College, and lead study investigator of the PETIT study stated: "Young patients with chronic ITP who have either an insufficient response to or side effects from standard therapies have limited treatment options, making this FDA approval of eltrombopag for children six years and older particularly important." "Through the eltrombopag studies, one of which is the largest randomized trial ever performed in children with chronic ITP, we discovered that Promacta - a treatment that can be taken once daily by mouth and shown to be well tolerated - can manage this disorder and help these young patients."

Radke J. “Eltrombopag Now Approved for Children (6 Years and Older) with ITP.” Rare Disease Report, June 12, 2015.



Fatigue is a Common Aspect of Chronic Illnesses Including ITP

Fatigue is not in your head! Recent research indicates fatigue is an important aspect of health-related quality of life from the patient perspective. It can have significant socio-economic consequences. Fatigue is a common feature of chronic illnesses and a significant number of adults and children with ITP suffer from fatigue. Reliable, validated fatigue scales have now been developed for use in ITP. These scales will facilitate future research into the causes and development of fatigue and the effectiveness of intervention.

Research has shown that acute inflammation acts on neural and endocrine systems resulting in 'sickness behavior', which is an adaptive response to infection and injury. Inflammation is also believed to cause fatigue in chronic disease. The immune dysregulation in ITP appears to have a number of pro-inflammatory components. Doctors should take fatigue into consideration when assessing the burden of disease. The researchers indicated that although effective ITP-directed therapy can improve fatigue, a number of other fatigue-directed strategies may also need to be considered.

Hill QA and Newland AC. “Fatigue in immune thrombocytopenia.” Br J Haematol. 2015, March 30. [Epub ahead of print]


Are you living with ITP?

Bristol-Myers Squibb logoBristol-Myers Squibb is conducting a clinical study with an investigational drug for the treatment of adults with persistent or chronic ITP. If you are 18 years of age or older, have previously received one or more prior therapies and initially responded to at least one therapy – you may be eligible. There are a number of clinical trials sites open in the U.S., Canada and Europe.

For a complete site list, please visit - MyITPStudy.com.




CMS Star Rating System Helps Patients Find Quality Hospital Care

Hallway in a hospitalA new star ratings system based on patients’ experiences has been introduced by the US Centers for Medicare & Medicaid Services (CMS). The system is now available on the CMS public information Web site “Hospital Compare.” The ratings share patients’ experiences with care at nearly 3,500 Medicare-certified acute-care hospitals. The ratings are based on data from the Hospital Consumer Assessment of Healthcare Providers and Systems Survey (HCAHPS). Topics include how well nurses and doctors communicate with patients, how well hospital staff respond to patients’ needs, cleanliness and quietness of the hospital environment, and how well patients are prepared for the post-hospital setting.

"The patient experience star ratings will make it easier for consumers to use the information on the Hospital Compare website and spotlight excellence in health care quality," Patrick Conway, MD, CMS acting principal deputy administrator, said in a statement. "These star ratings also encourage hospitals and clinicians to strive to continuously improve the patient experience and quality of care delivered to all patients," he added. The CMS will update the ratings quarterly.

Brooks, M. “CMS Releases First Hospital Compare Star Ratings System.” Medscape, April 17, 2015.





High Sugar Consumption is Linked to Many Illnesses

Americans are consuming more sugar than ever before. Dr. Laura Schmidt, a professor at the University of California San Francisco, says Americans consume three times more sugar than is recommended. “Currently we’re consuming about twice as much as we did say in 1970,” she said. What effect is this having on our health? More than 70 medical disorders are linked to over consumption of sugar. Schmidt and other scientists launched “Sugar Science,” a Web site program to educate people about how sugar impacts their health. High sugar consumption has been linked to heart disease in adults and rising levels of diabetes in children. Just 20 years ago diabetes in children was nearly unheard of. Today more than 20,000 children have it. Too much sugar can impact the liver and cause non-alcoholic fatty liver disease. Also too much sugar has been tied to growing obesity levels in adults and children in the US.

Scientists recommend women consume no more than six teaspoons (25 grams) of added sugar in their daily diet and men consume no more than nine teaspoons (38 grams) of added sugar per day. Sugary drinks (sodas, fruit juice drinks, sports drinks, coffee drinks, and energy drinks) make up more than a third of added sugar consumed in the US. Schmidt says not to worry about natural sugars that occur in fruits and vegetables as these are healthy and include fiber. Sugar added to food and drinks sneaks in under many names: dextrose, corn syrup, maltose, galactose, fructose, high-fructose corn syrup, and maltodextrin. Her research advises ditching the sugary drinks to have better health. For more information log onto their Web site: http://www.sugarscience.org/

“Sugar Science: Too Much Sweet in What We Eat.” Medical Breakthroughs, reported by Ivanhoe.com, May 11, 2015.





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July 9: Cleveland, OH
July 11: Chicago, IL
July 26: Seattle, WA

August 5: ITP Parents Teleconference





Pump it Up for Platelets
July, 2015: 100 Mile Challenge, Oak Ridge, NJ
September 19, 2015: 
Chicago, IL
September 26, 2015: Half Marathon - East Hampton, NY
September 27, 2015: Everett, WA
November 21, 2015: Pedal for Platelets El Tour de Tucson, AZ
TBD: Cleveland, OH



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