PDSA E-News: January 31, 2015



2015 conference hotel

Registration Now Open!

This will be PDSA's 15th annual conference! Please join us July 24th-26th at the Gaylord Opryland Resort & Convention Center in Nashville, Tennessee. You don’t want to miss out on this tremendous opportunity to hear and talk with world-renowned ITP clinicians and researchers. Each year the conference provides opportunities to hear the latest information about ITP, meet others who are coping with ITP, and get answers to your questions. Please click on the link below for more information.

ITP Conference Information




Platelet Transfusions Increased Clot Risk in Several Rare Platelet Disorders

PlateletsA Johns Hopkins-led study in the journal Blood is the first nationwide review to show platelet transfusions frequently given to patients with three rare platelet disorders -- ITP, HIT, and TTP -- are associated with higher risks for clots and death in TTP and HIT. All three disorders are marked by low platelet counts. In immune thrombocytopenia (ITP) low platelets lead to bleeding. Previous research has already indicated clot risks for patients with ITP. In thrombotic thrombocytopenic purpura (TTP) clots form in small blood vessels, reducing the overall platelet count. Heparin-induced thrombocytopenia (HIT) is a life-threatening reaction to the drug heparin, given to prevent blood clots. In 1 to 5 percent of these patients the immune system responds by making clots rather than preventing them.

The analysis found no significantly increased risks from platelet transfusions in ITP, but it found a platelet transfusion in TTP patients increased odds of blood clots more than fivefold and doubled odds of a heart attack. Platelet transfusions in HIT patients increased bleeding risk fivefold and arterial clot risk was more than threefold. Researchers believe for patients with HIT or TTP, platelet transfusions should be reserved “only for severe, life-threatening bleeding” when the patient has not responded to other therapies or surgery.

R Goel, PM Ness, C Takemoto, et al. “Platelet transfusions increase odds of death in some rare blood cell disorders.” Science Daily, 14 Jan. 2015.


Safe to Discontinue Eltrombopag after Complete Remission from Primary ITP

EltrombopagMany ITP patients have found eltrombopag an effective and safe therapy. A Spanish retrospective study evaluated data from 260 adult ITP patients treated with eltrombopag (Promacta®, from GlaxoSmithKline) for 24 months. The researchers reported complete remissions in 201 patients. Of those, 80 discontinued eltrombopag treatment. Reasons it was discontinued included persistent platelet response even with reduced dose (33 patients). Twenty-nine patients stopped treatment because they achieved platelet counts higher than 400,000. Only three patients stopped treatment because of thrombosis (blood clots). At 9-month follow up, 49 patients were evaluated. Of those, 26 achieved a sustained response without further ITP therapy. The researchers couldn’t identify any predictive factors for which patients would have a sustained response.

T González-López, C Pascual, MT Álvarez-Román, et al. “Successful discontinuation of eltrombopag after complete remission in patients with primary immune thrombocytopenia.” Am J Hematol, 2014; doi: 10.1002/ajh.23900. http://onlinelibrary.wiley.com/doi/10.1002/ajh.23900/abstract




FDA Closer to Approving Less Expensive Biosimilar Drugs

FDAA new class of cheaper medicines that could save more than $250 billion per year in US healthcare costs is closer to reality. An expert Food and Drug Administration (FDA) panel unanimously recommended approving EP2006, a copycat version of the blockbuster biologic drug Neupogen®, used to help cancer patients fight infection while undergoing cancer treatment. Manufactured by Sandoz, EP2006, if approved would be the first biosimilar drug to enter the US market. Biosimilars are versions of complex biologic drugs, which are produced from living cells and are more expensive and harder to manufacture than ordinary chemical drugs. Biosimilars are not exact replicas of the original biologic, which makes these drugs more complicated and harder to regulate than traditional chemical drugs.

Popular biologics include Rituxan® and Avastin®, used for cancer, and Humira® used for autoimmune disease. Many ITP patients have taken Rituxan® (rituximab). Availability of biosimilars in the US could greatly expand patient access to some of the most expensive, life-saving drugs, according to Janet Woodcock, FDA Director of the Center for Drug Evaluation and Research. Insurance companies and policymakers have increased their scrutiny of the high cost of specialty medicines, like biologics, in the US. It is expected that biosimilar drugs will cost 20 to 30 percent less than the original biologic in overseas markets.

J Millman, “The cheaper cancer drug that could pave the way for much more affordable medicine.” Washington Post, January 7, 2015. http://www.washingtonpost.com/business/economy/fda-panel-expected-to-take-step-toward-approving-biosimilar-cancer-drug/2015/01/07/09d6b1f4-9698-11e4-8005-1924ede3e54a_story.html




An Avocado a Day Could Help Keep Bad Cholesterol Away

AvocadoAccording to new research, including an avocado daily in a cholesterol-reducing moderate diet could improve LDL, the bad cholesterol. In the study 45 healthy overweight or obese patients were placed on three types of cholesterol-lowering diets after following a standard American diet (34 percent of calories from fat) for two weeks. They were randomly selected to follow one of three diets: a lower fat diet without avocado, a moderate-fat diet without avocado, or a moderate-fat diet with one avocado per day. During the study each participant stayed on each of the three diets for five weeks.

Findings reported in the Journal of the American Heart Association showed bad cholesterol, LDL, was 13.5 mg/L lower in those who were on the moderate-fat diet with a daily avocado, compared to those on the moderate-fat diet without avocado (8.3 mg/L lower) and the lower fat diet (7.4 mg/L lower) without avocado. Avocados are not yet a mainstream food in the US and can be expensive at certain times. Most people are not sure how to use them except for guacamole, but they usually eat it with high fat, high salt chips. Avocados can also be eaten with salads, vegetables, sandwiches, or in smoothies. The researchers said many heart-healthy diets recommend replacing saturated fats with monounsatured fats, like those in avocados, to reduce heart disease risk. The study was partly supported by the Haas Avocado Board.

L Wang, P Bordi, JA Fleming, et al., “Effect of a Moderate Fat Diet with and without Avocados on Lipoprotein Particle Number, Size and Subclasses in Overweight and Obese Adults: A Randomized, Controlled Trial.” J Am Heart Assoc, January 7, 2015 doi: 10.1161/JAHA.114.001355. http://www.jaha.ahajournals.org/content/4/1/e001355.full  



PDSA Local Support Group Meetings:

February 4, 2015: ITP Parents Teleconference Group
February 14, 2015: Nashville, TN
February 21, 2015: Miami, FL

March 12, 2015: Cleveland, OH
March 21, 2015: Central/North, NJ
March 28, 2015: Dallas/Ft. Worth, TX



Fundraising Events:

Surf City MarathonFebruary 1, 2015:  
Surf City Marathon, Huntington Beach, CA

On February 1, 2015, I will be running the Surf City Half Marathon in Huntington Beach, CA in honor of my son. I will be raising funds for PDSA to help support the fantastic patient services they offer as well as the research they are funding to help find better treatments and a cure for for ITP.

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