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Photographers and video technicians will be present throughout the event space. We encourage you, if you desire, to wear purple clothing, which represents platelets and is PSDA’s signature color.

By virtue of your registration confirmation to the event, you irrevocably consent to and authorize the use of your image on video or in photographs by the Platelet Disorder Support Association. This includes any reproduction of the image(s) in any media whatsoever, in connection with PDSA’s promotion of programs, materials, and services.

FRIDAY, JULY 24, 2026

SATURDAY, JULY 25, 2026

SUNDAY, JULY 26, 2026

* Breakout group session assignments will be listed on the back of name badges
Meeting room details will be provided in-person at Registration.

All times listed are in Mountain Time.

James Bussel, MD

Dr. James Bussel is Professor of Pediatrics, Medicine, and Obstetrics at the Weill Medical College of Cornell University in New York City. His training was initiated at Yale, continued at Columbia College of Physicians and Surgeons, then he completed a Pediatric Residency at Cincinnati Children’s Hospital, and a Fellowship in Pediatric Hematology/Oncology at the combined Cornell/Memorial Sloan Kettering program. The great majority of Dr. Bussel’s publications are centered around diagnosis and especially management of patients with ITP, including children with ITP, adults with ITP, pregnant women with ITP, HIV infected patients with thrombocytopenia, and fetuses affected by autoimmune and alloimmune thrombocytopenia. He has worked with IVIg, IV anti-D, rituximab, and most recently the thrombopoietic agents. Dr. Bussel also serves on the PDSA Board of Medical Advisors.

Annemarie Fogerty, MD

Dr. Annemarie Fogerty is a Hematology Specialist in Boston, MA with over 18 years of experience. She graduated from New York University School of Medicine in 2003, then went on to internal medicine residency at Massachusetts General Hospital. She completed her fellowship training at the Dana Farber Cancer Institute. She currently serves as the Clinical Director for Hematology and Director of Reproductive Hematology at both Massachusetts General Hospital and Newton Wellesley Hospital. Her particular areas of clinical expertise and research focus on thrombocytopenia and thrombosis in the pregnant patient. Dr. Fogerty also serves on the PDSA Board of Medical Advisors.

Terry Gernsheimer, MD

Dr. Terry Gernsheimer is a Professor of Medicine at the University of Washington School of Medicine, Medical Director of the Platelet Antibody Laboratory at the Puget Sound Blood Center, and Director of Transfusion Services at the University of Washington Medical Center and the Seattle Cancer Care Alliance. Dr. Gernsheimer’s major research interests include the diagnosis, treatment and pathophysiology of autoimmune platelet disorders as well as several aspects of transfusion medicine and medical education. Dr. Gernsheimer also serves on the PDSA Board of Medical Advisors.

Rachael Grace, MD, MMSc

Dr. Rachael Grace is a Pediatric Hematologist at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and an Associate Professor at Harvard Medical School in Boston, Massachusetts. She is the Medical Director of the Hematology Clinical Research Program at Boston Children’s Hospital and is recipient of the Blanche P. Alter Investigatorship in Hematology. Dr. Grace received her MD from Brown University and received her Masters in Medical Science from Harvard Medical School. She completed her pediatrics residency at Boston Children’s Hospital and pediatric hematology/oncology fellowship at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. She is the director of the pediatric ITP Consortium of North America (ICON), a collaboration of more than 50 sites in North America focused on improving ITP care for children. She is a leading investigator for multiple observational and interventional research studies for children with ITP and is involved in national ITP guideline initiatives. Dr. Grace’s clinical and research interests are focused on improving outcomes of children with immune cytopenias and rare congenital hemolytic anemias. Dr. Grace also serves on the PDSA Board of Medical Advisors.

Craig Kessler, MD

Dr. Craig Kessler, Professor of Medicine and Pathology, is the Director of the Hemophilia and Thrombosis Comprehensive Treatment Center and Director of the Division of Coagulation in the Department of Laboratory Medicine at Georgetown University Medical Center in Washington, DC. His research interests include development and analysis of treatment strategies for bleeding disorders such as hemophilia, von Willebrand disease, and ITP. Dr. Kessler has also designed and participated in numerous clinical trials to study the pathophysiology and treatment of thrombophilic states, such as venous thromboembolism and cancer. He has written over 250 papers and chapters and is co-editor of a popular authoritative textbook on consultative hemostasis. Dr. Kessler also serves on the PDSA Board of Medical Advisors.

David J. Kuter, MD, DPhil

Dr. David Kuter is Chief of Hematology, Massachusetts General Hospital, Boston, Massachusetts. He earned a research doctorate (DPhil) at Magdalen College of Oxford University and a medical degree at Harvard Medical School. Dr. Kuter is Professor of Medicine at Harvard Medical School. In addition, Dr. Kuter sits on numerous national and international ITP committees and is board certified in Internal Medicine, Hematology, and Medical Oncology. He has dedicated years of effort to researching coagulopathies, anticoagulation, and platelet disorders. In recent years, Dr. Kuter has conducted groundbreaking research into the development of effective thrombopoietic agents. Dr. Kuter also serves on the PDSA Board of Medical Advisors.

Michele P. Lambert, MD, MSTR

Dr. Lambert is an Assistant Professor of Clinical Pediatrics at the Children’s Hospital of Philadelphia and Medical Director of the Special Coagulation Laboratory at CHOP. She graduated from UMDNJ-New Jersey Medical School (now Rutgers) and completed her pediatric residency at St. Christopher’s Hospital for Children followed by a year as Chief Resident. She then moved the Children’s Hospital of Philadelphia where she completed her fellowship in pediatric hematology/oncology. She received her Masters in Translational Medicine in 2001. Her research efforts have focused on understanding the control of platelet production by megakaryocytes (the cells that make platelets) and the ways in which genetics influence platelet function and number in various clinical scenarios including ITP and inherited platelet disorders. Dr. Lambert also serves on the PDSA Board of Medical Advisors.

Howard A. Liebman, MD

Dr. Howard Liebman is Professor of Medicine and Pathology at the University of Southern California’s (USC) Keck School of Medicine, Los Angeles, CA. He serves as Medical Director of the Special Hemostasis Laboratory at USC’s Norris Comprehensive Cancer Center and is Director of the fellowship program in hematology. Dr Liebman received his medical degree from USC and completed his postgraduate training including a residency in internal medicine and fellowships in medical oncology and hematology at Los Angeles County – University of Southern California Medical Center. Dr Liebman completed a research fellowship at Tufts University – New England Medical Center, Boston, MA and held faculty positions at Tufts University and Boston University, before returning to USC. Dr Liebman’s research interests include clinical management and characterization of haemostatic and thrombotic disorders, management of autoimmune blood disorders and clinical therapy of HIV and AIDS. He has authored or co-authored 85 peer-reviewed publications and 26 reviews and chapters. Dr. Liebman also serves on the PDSA Board of Medical Advisors.

Diane J. Nugent, MD

Dr. Diane Nugent is a Clinical Professor, Department of Pediatrics, University of California, Irvine School of Medicine. She currently serves as Chair, Hematology, CHOC Children’s Hospital of North Orange County, Orange, CA; Medical Director, Hematology and Blood and Donor Services CHOC Children’s; and Division Chief, Hematology, CHOC Children’s Specialists. Dr. Nugent is a nationally-recognized expert in pediatric hematology who specializes in blood disorders, bone marrow failure, bleeding and clotting disorders, anemias, and immune deficiencies. She is involved in clinical trials for rare blood disorders and is a principal investigator for regional hemophilia programs. Dr. Nugent has coauthored more than100 journal articles and book chapters. She chairs review subcommittees at the National Heart Lung and Blood Institute (NHLB) at NIH in hematology. Dr. Nugent also participates in the Pediatric ITP Consortium of North American (ICON), a group of pediatric hematologists dedicated to improving the understanding, treatment and quality of life (QOL) of pediatric ITP patients. Dr. Nugent also serves on the PDSA Board of Medical Advisors.

Sandhya Panch, MD

As Associate Professor of Hematology at the University of Washington (UW), School of Medicine, and as Director of Transfusion at the Fred Hutch Cancer Center (FHCC), Dr. Panch is committed to the pursuit of clinical and translational studies in immunohematology. As a mentee of Dr. Terry Gernsheimer, she cares for a large panel of immune thrombocytopenia (ITP), autoimmune hemolytic anemias (AIHA) and red cell/platelet transfusion refractory patients in the Pacific Northwest. She leads several industry-sponsored and investigator-initiated trials incorporating correlatives and biomarker-driven approaches to managing immune cytopenias at the UW/FHCC. She also serves on medical advisory boards for the Warm Autoimmune Hemolytic Anemia (WAIHA) warriors, and Cold Agglutinin Disease (CAD) foundation.

John W. Semple, PhD

Dr. John Semple received his PhD in Immunology from Queen’s University in 1986 and trained as a Post Doctoral Fellow in the Banting and Best Department of Medical Research of the C.H. Best Institute, University of Toronto from 1986-1990. He joined St. Michael’s Hospital in 1990 as Director of Transfusion Medicine Research of the Toronto Platelet Immunobiology Group. He joined Lund University in 2016 as a Professor of Transfusion Medicine of St. Michael’s Hospital. His research activities include several areas including anti-platelet T cell responses in patients with acute and chronic ITP, the analysis of how platelet antigens are recognized by the immune system, and how platelets may act as immune-like cells that are responsible for initiating and perpetuating their own auto immune demise. Dr. Semple also serves on the PDSA Board of Medical Advisors.

Michael Tarantino, MD

Dr. Michael Tarantino is a Professor of Pediatrics and Medicine at the University of Illinois College of Medicine Peoria and Medical Director of the Bleeding & Clotting Disorders Institute. He received a doctoral degree in medicine from the University of Wisconsin School of Medicine in 1987. He completed an internship and residency at the University of Arizona Health Sciences Center and a Fellowship in Pediatric Hematology/Oncology at the University of Wisconsin School of Medicine. Dr. Tarantino first became interested in ITP during his residency in 1988. Since that time, he has designed and/or participated in numerous clinical investigations related to ITP and other platelet disorders. He has authored numerous publications relevant to the diagnosis and management of ITP, especially as it occurs in children. He is also active in hemophilia and other bleeding disorders research. Dr. Tarantino also serves on the PDSA Board of Medical Advisors.

News from the American Society of Hematology Annual Meeting

Each year the American Society of Hematology (ASH) meeting attracts thousands of clinicians and scientists, worldwide, to learn about and report on the latest research. This year’s meeting, December 7 to 10 in New Orleans, featured more than 10 hours of presentations and 90 pages of abstracts about ITP and related diseases. Below are some trends.

(The ASH abstract numbers are in parentheses. You can search on the number and read the complete abstract at https://ash.confex.com/ash/2013/webprogram/start.html, after you agree with the terms.)

Mixing Current Treatments

• Triple Therapy Attacks Three Sources (1084)
• Dexamethasone Plus Rituximab Improves Outcome (2310)

Understanding More about TPO Treatments

• Bone Marrow Changes Rare (326)
• Off Treatment, Still in Remission (327, 328, 2323)

Making a Correct Diagnosis

• Know your H. pylori Status (2321, 2324, 3548)
• New Genetic Cause Found (565)

Improving the Treatment of Children

• Observation Increasing (772)
• Longer-term TPO Results Positive (3530, 3541)

Mixing Current Treatments

Dr. Howard Liebman: "By using a combination of agents it may be possible to achieve a greater efficacy with acceptable toxicity."

Triple Therapy Attacks Three Sources (1084)

Treating with a single therapy targets only one of the three possible cell types involved in lowering platelets in ITP so researchers experimented with treatment combinations that addressed all three. They treated 26 patients with various doses of rituximab (B-cells), prednisone or dexamethasone (T-cells) and cyclosporine or mycophenolate mofetil (antigen-presenting cells). After a year, half of the patients were still in remission.

Dexamethasone Plus Rituximab Improves Outcome (2310)

Only 20% of people taking rituximab (Rituxan®) achieve a long-term remission. However, when newly diagnosed (less than 2 years) patients were treated with a combination of rituximab and 3 cycles of dexamethasone, about 75% had a positive response. After five years, 59% maintained a complete response.

Understanding More about TPO Treatments

Bone Marrow Changes Rare (326)

When the TPO treatments (romiplostim/Nplate®, eltrombopag/Promacta®) were approved, some doctors and regulators had concerns about patients developing problematic changes in their bone marrow. In a study of the bone marrow of patients taking eltrombopag (Promacta®) for up to 5 years, independent experts found that bone marrow reticulin (scarring) was either absent or only mildly increased in 98% of the patients tested. No patients developed lasting bone marrow problems due to the treatments.

Off Treatment, Still in Remission (327, 328, 2323)

In one study, 15% of the patients who received TPO treatments remained in remission after treatments were discontinued. In a second study of patients who participated in TPO clinical trials, those who had ITP fewer than 5 years were more likely to sustain a remission after discontinuation. A third study mirrored the positive results and showed that patients who were treated about a month could achieve a lasting remission.

Making a Correct Diagnosis

Know your H. pylori Status (2321, 2324, 3548)

H.pylori bacteria have been associated with ITP and past research has shown that eradication of the bacteria can improve platelet counts. However, the results were not consistent. At ASH, three studies addressed the connection between H.pylori and ITP. All three reported some positive platelet response after eradicating H.pylori. One study was from Iran, another from Korea, and a third from an ethnically diverse patient population in Los Angeles. This confirms earlier findings that patient ethnicity can be a factor in the success of this treatment.

New Genetic Cause Found (565)

ITP is a diagnosis of exclusion, when all other causes of low platelets are ruled out. However more causes of low platelets are being discovered each year. Researchers did genetic studies on several members of a family in Michigan who were diagnosed with ITP as children. They discovered that a mutation to a gene producing nitrous oxide (NOS3) was the cause of low platelets in this family, not ITP. For more information on low platelets and families see:
http://www.pdsa.org/about-itp/and-families.html

Improving the Treatment of Children

Observation Increasing (772)

The 2011 updated ASH Guidelines for ITP recommend that children be managed with observation alone if they have only mild or no bleeding symptoms, regardless of platelet count. To determine if these guidelines were changing practice, a large hospital in Pennsylvania looked at how they managed newly-diagnosed children with ITP. They did find a marked decrease in treatment over the years. The percent of children observed and not treated increased from 34% in 2007-2010 to 72% in 2012.

Longer-term TPO Results Positive (3530, 3541)

In one study, children treated with romiplostim (Nplate®), some more than three years, continued to maintain a platelet count greater than 50,000. In another report, 82% of the 33 children treated with either romiplostim or eltrombopag (Promacta®) responded to the treatments. Some of the children had additional therapies and a few were able to stay in remission after therapy was discontinued. No severe side effects were reported.

ITP and Platelet Disorders Research and Treatments

• Long-term Nplate® Side Effects Tallied
• For Lupus Related ITP Consider Plaquenil®
• Sterol Storage Disorder Confused with ITP
• T-cells May Hold Key to Predicting Rituxan® Success

Hospitals, Insurance, and Medical Care

• Third Leading Cause of Death in US Hospitals – Medical Errors
• Prescription-Drug Imports Approved in Maine

General Health and Medicine

• Diet Linked to Depression and Inflammation
• Acupuncture Comes to the Rescue

ITP and Platelet Disorders Research and Treatments

Long-term Nplate® side effects tallied

Researchers summarized the side effects for 653 patients with ITP enrolled in 13 romiplostim (Nplate®) clinical trials. The patients were treated for up to 5 years, 921.5 patient-years total. Results: 6% had thrombotic, blood clotting, events (some linked to a larger than recommended dose or count); 8% had serious bleeding; 1.8% developed bone marrow reticulum; 3.8% died. The authors conclude: “Our data demonstrate that long-term romiplostim treatment is well tolerated, with no new safety signals, even in patients treated for up to 5 yr.”

Rodeghiero F et al. “Long-term safety and tolerability of romiplostim in patients with primary immune thrombocytopenia: a pooled analysis of 13 clinical trials.” European Journal of Hematology. 91.5: 423–436, Nov 2013.
http://onlinelibrary.wiley.com/doi/10.1111/ejh.12181/abstract

For Lupus Related ITP Consider Plaquenil®

Hydroxychloroquine (Plaquenil, Axemal, Dolquine, Quensyl) is sometimes used to treat lupus, rheumatoid arthritis, and other diseases. However, it is not a treatment used for ITP. In this new report doctors gave hydroxychloroquine to12 patients diagnosed with both ITP and lupus and another 28 patients diagnosed with ITP who also had a high ANA test result (one marker for lupus). Overall, 60% of people in the study responded to the treatment. Those who were officially diagnosed with both diseases had a higher response rate.

Khellaf M et al. “Hydroxychloroquine is a good second-line treatment for adults with immune thrombocytopenia and positive antinuclear antibodies.” Am. J. Hematol. Oct 28 2013.
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23609/abstract

Sterol Storage Disorder Confused with ITP

Another genetic disease has been confused with ITP, sitosterolemia (phytosterolemia). All 13 patients with this disease in the study had been misdiagnosed as having ITP, one person for 28 years. Patients with sitosterolemia can have low red cells, abnormally large platelets, premature arteriosclerosis, red or orange fatty bumps on the skin, and more. This article reminds us that ITP is a diagnosis of exclusion and sometimes other causes of low platelets are missed. It is important to tell your doctor about all medical problems to help get an accurate diagnosis.

Note: For more information on genetic causes of low platelets see:
http://www.pdsa.org/about-itp/and-families.html

Wang Z et al. “Specific macrothrombocytopenia/hemolytic anemia associated with sitosterolemia.” Am. J. Hematol. Oct 26 2013.
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23619/abstract

T-cells May Hold Key to Predicting Rituxan ® Success

Wouldn’t it be wonderful if there was a test to determine if you are going to respond or not to a treatment, rather than the current trial-and-error treatment model? Researchers are making some progress toward this goal. A group of scientists in France and the US found a difference in the spleen cells between those who responded to rituximab (Rituxan®) and those who didn’t. Those who didn’t respond had an increase in CD8+ T-cells and these CD8+ T-cells were in a specific pattern.

Audia S et al. “Preferential splenic CD8+ T-cell activation in rituximab-nonresponder patients with immune thrombocytopenia.” Blood. Oct 3 2013.
http://bloodjournal.hematologylibrary.org/content/122/14/2477.abstract

Hospitals, Insurance, and Medical Care

Third Leading Cause of Death in US Hospitals – Medical Errors

Many more people are dying in US hospitals from medical mistakes than previously reported, perhaps more than four times more. This makes medical errors the third leading cause of death behind heart disease and cancer. Since no one counts all medical errors and sometimes these are not reported, all numbers are estimates. However, no matter what the number, the research shows a problem that needs to be addressed. Patients can help by reporting harmful events and participating in follow-up investigations.

Allen M, ProPublica. “How Many Die from Medical Mistakes in U.S. Hospitals?” Scientific American. Sep 20 2013
http://www.scientificamerican.com/article.cfm?id=how-many-die-from-medical-mistakes-in-us-hospitals

Rodak S. “Study: Medical Error Deaths 4.5 Times More Likely Than IOM Estimate.” Becker’s Clinical Quality and Infection Control. Sep 20 2013.
http://www.beckershospitalreview.com/quality/study-medical-error-deaths-4-5-times-more-likely-than-iom-estimate.html

James JT. “A New, Evidence-based Estimate of Patient Harms Associated with Hospital Care.” Journal of Patient Safety. Sep 2013 9.13:122–8.
http://journals.lww.com/journalpatientsafety/Fulltext/2013/09000/A_New,_Evidence_based_Estimate_of_Patient_Harms.2.aspx

Prescription-Drug Imports Approved in Maine

It is no secret that people outside of the US pay less for their pharmaceuticals. Saving money by using foreign pharmacies is nothing new to those near the Canadian border. The city of Portland, Maine, saved more than $3.2 M by using a Canadian drug service between 2004 and 2012. Recently, the state of Maine has passed a law, the first of its kind, sanctioning the use of foreign pharmacies for the purchase of drugs. The drug makers are suing the state citing safety concerns.

Levitz J, Martin TW. “Maine to Allow Prescription-Drug Imports.” Wall Street Journal. Oct. 11 2013.
http://online.wsj.com/news/articles/SB10001424052702303442004579123613325473946

General Health and Medicine

Diet Linked to Depression and Inflammation

Many people with ITP are depressed from the disease and the treatments, but their depression can be difficult to manage since drugs like Prozac can impact platelets. Diet changes could help. In one study, more than 43,000 women who were not depressed were followed for 12 years. Those who consumed soft drinks, fatty red meat, and refined grains (ex. pasta, white bread, crackers) consistently were about 40% more likely to be diagnosed or treated for depression over time than the healthier eaters. The depressed women also had elevated markers for inflammation. A Mediterranean diet high in vegetables, olive oil, and fish was linked to a lower rate of depression in prior studies. Diet choices can also reduce inflammation.

Note: Inflammation has been linked to ITP. For information on diet and ITP see:
http://www.pdsa.org/treatments/complementary/food-as-a-cure.html

Heid M. “Pass the pasta -- and the Prozac?” Prevention News. Oct 2013.
http://www.prevention.com/mind-body/emotional-health/certain-foods-linked-inflammation-and-depression

Acupuncture Comes to the Rescue

Acupuncture and counseling may also improve depression according to a new study. In this study 755 people with long-standing, moderately-severe depression were divided into three groups. One group received the standard treatment for depression; a second group got the standard treatment plus acupuncture, and the third group had the standard treatment plus humanistic counseling. Both the acupuncture and counseling groups fared better than the standard treatment group. “Acupuncture seems like an excellent second-line, and perhaps even first-line, treatment for primary-care patients preferring an alternative therapy.”

Note: People with low platelets can safely get acupuncture treatments according to experts. See:
http://www.pdsa.org/treatments/complementary/energy-therapy.html

Roy-Bryne P. “Acupuncture for Depression Really Works!” NEJM Journal Watch. Oct 11 2013.
http://www.jwatch.org/na32441/2013/10/11/acupuncture-depression-really-works

MacPherson H. “Acupuncture and Counselling for Depression in Primary Care: A Randomised Controlled Trial.” PLOS Medicine. Sep 24,2013.
http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001518

This e-newsletter is a monthly publication of the Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a healthcare professional.

ITP and Platelet Disorders Research and Treatments

• Rituxan: Beware Hepatitis B
• Inherited Bleeding Disorders: Not So Rare
• SSRIs and Bleeding Linked Again
• New Treatment Approach: Gut Bacteria

Hospitals, Insurance, and Medical Care

• Read Practice Guidelines Carefully
• Google Wants to Extend Your Life

General Health and Medicine

• Beware of Tylenol Overdose
• Detox Your Face

ITP and Platelet Disorders Research and Treatments

Rituxan.. Beware Hepatitis B

Rituximab (Rituxan®) can reactivate hepatitis B in those who have had the disease. Because of this potential health problem, the package insert now includes a new boxed warning for the treatment. The new package information includes a recommendation for screening all patients for hepatitis B before receiving rituximab as well as suggestions for treating hepatitis B should it occur.

“Arzerra (ofatumumab) and Rituxan (rituximab): Drug Safety Communication - New Boxed Warning, Recommendations to Decrease Risk of Hepatitis B Reactivation.” FDA. Sep 25 2013.
http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm369846.htm

Inherited Bleeding Disorders: Not So Rare

Low platelets can be caused by a genetic anomaly, not just antibodies. While each of the individual inherited (genetic) bleeding disorders is rare, in total, they are not. Some of these inherited bleeding disorders, such as Bernard-Soulier Syndrome, have been known for 20 years, but others have been more recently characterized. “[Most] can be diagnosed by a combination of clinic history, physical examination, and standard laboratory studies, including an assortment of platelet morphologic and functional studies. Confirmatory, targeted-gene analyses are often done.”

Lambert MP, Poncz, M. “They're not your Daddy's Inherited Platelet Disorders anymore.” J Thromb Haemost. Sep 14 2013, pp:1538-7836.  
http://onlinelibrary.wiley.com/doi/10.1111/jth.12405/abstract

Note: Some people with an inherited bleeding disorder are misdiagnosed as having ITP. PDSA has more information at:
http://www.pdsa.org/about-itp/and-families.html

and
http://www.pdsa.org/resources/other-platelet-disorders.html

SSRIs and Bleeding Linked Again

SSRIs (selective serotonin reuptake inhibitors) are a popular class of drugs used to treat depression. Think Prozac®, Paxil ® and Zoloft ®. In the past, a number of studies have associated the use of these drugs with upper gastrointestinal bleeding after several months use. This new study shows that bleeding can occur much earlier. The study measured bleeding at 7, 14, and 28 days and found bleeding at each timeframe.

Wang YP et al. “Short-Term Use of Serotonin Reuptake Inhibitors and Risk of Upper Gastrointestinal Bleeding.” Am J Psychiatry. Sep 13 2013.
http://ajp.psychiatryonline.org/article.aspx?articleid=1738031

New Treatment Approach: Gut Bacteria

Your gut plays a big part in maintaining a healthy immune system, so an unhealthy gut could cause problems. Now scientists figured out a way to regulate gut immune functions. They manipulated gut bacteria in mice to enhance the activity of specific T-regulatory cells (Tregs), cells that play an important role in the development of autoimmune diseases such as ITP. They conclude: using targeted bacteria to change the gut has potential for treating immune disorders.

Atarashi R. “Treg induction by a rationally selected mixture of Clostridia strains from the human microbiota.” Nature 500. 232–236. Aug 8 2013.
http://www.nature.com/nature/journal/v500/n7461/full/nature12331.html

Hospitals, Insurance, and Medical Care

Read Practice Guidelines Carefully

Physicians often rely on medical practice guidelines for treatment recommendations. However, a close review of two groups of practice guidelines, one for endocrine problems and another for cancer treatment, shows that these guidelines can be flawed. In the endocrine guidelines 34% of the strong recommendations were based on weak evidence. In a review of 169 guidelines on various types of cancer, researchers found they met only 2.75 of the 8 guideline criteria established by the National Institute of Medicine.

Brett AS. “Clinical Practice Guidelines Require Scrutiny for Quality.” Journal Watch. Sep 26 2013.
http://www.jwatch.org/na32275/2013/09/26/clinical-practice-guidelines-require-scrutiny-quality

Note: PDSA has links to various ITP guidelines and other expert commentary at
http://www.pdsa.org/treatments/treatment-resources/treatmentguidelines.html.

PDSA staff participated in the development of the International Consensus Report and witnessed the rigorous development of that document.

Google Wants to Extend Your Life

Google is experimenting with driverless cars, Internet by balloon, and now…ways to keep us young and healthy for a very long time. The search giant has made a major investment in the California Life Co., or Calico. Calico will be headed by Arthur Levinson, chairman of the boards of Apple and Genentech (maker of Rituxan ®). “For Google, nothing is off limits. Even death is on the firing line.”

Guynn J. “Google launches healthcare company Calico to extend life.” LA Times. Sep 18, 2013.
http://www.latimes.com/business/la-fi-google-aging-20130919,0,3691955,full.story

General Health and Medicine

Beware of Tylenol Overdose

Many people with ITP rely on Tylenol or other products containing the main ingredient, acetaminophen, because aspirin or NSAIDs can promote bleeding. For millions of users Tylenol and like products have been safe and effective; but for 1,500 people in the last decade the drugs were instrumental in their death. Acetaminophen In large amounts, especially if combined with alcohol, can damage or even destroy the liver. It is important to use the medication as directed and read the labels of other drugs to be sure they do not contain acetaminophen and, unwittingly, add to the amount taken.

Gerth J, Miller TC. “Use only as Directed.” ProPublica. Sep 20, 2013:
http://www.propublica.org/article/tylenol-mcneil-fda-use-only-as-directed.

You can find more articles in the series at:
http://www.propublica.org/series/overdose

Detox Your Face

Scientists found ten toxic metals in 32 drugstore lipsticks and lip balms and 75% of the lipsticks tested contained lead. European brands may be safer since the European Union bans more than 10,000 potentially toxic ingredients from make-up while the US bans only nine. The Environmental Working Group (http://www.ewg.org/skindeep/) and The Campaign for Safe Cosmetics (http://safecosmetics.org/article.php?list=type&type=33) have much information to help you choose less toxic products.

Snowder T. “4 easy swaps to make your makeup less toxic.” Happy Living. Sep 12 2013.
http://www.ksl.com/index.php?fm=home_page&nid=1010&s_cid=featured-5&title=4-easy-swaps-to-make-your-makeup-less-toxic&sid=26829198

Note: Low platelets have been linked to toxin exposure. See:
http://www.pdsa.org/about-itp/warnings.html

ITP and Platelet Disorders Research and Treatments

• Rigel Testing New Treatment for ITP
• No Treatment, Better Quality-of-Life for Children
• IVIg Preferred for Infection-Related ITP

Hospitals, Insurance, and Medical Care

• Big Variation in Doctor Payments
• Get Ready for the New Healthcare Law

General Health and Medicine

• Anti-Depressants Contribute to Bleeding
• Gut Health May Impact ITP

ITP and Platelet Disorders Research and Treatments

Prednisone Causes Adrenal Problems

Long-term corticosteroids, like prednisone, significantly diminished adrenal function in almost half of the 60 patients tested in a recent study. After the prednisone was stopped, the adrenal function in the test population returned to normal, when it was measured some months later. People who took the prednisone for a longer time, at a higher cumulative dose, had more adrenal problems.

Sacre et al. “Pituitary-Adrenal Function After Prolonged Glucocorticoid Therapy for Systemic Inflammatory Disorders: An Observational Study.” JCEM. August 2013.
http://jcem.endojournals.org/content/98/8/3199.abstract

Rigel Testing New Treatment for ITP

Rigel Pharmaceuticals announced that it is planning a Phase III clinical study of fostamatinib in ITP, pending discussions with regulatory agencies. Fostamatinib is a pill that stops macrophages, a kind of white blood cell, from destroying antibody-coated platelets. The Phase III trial would enroll about 150 patients and be completed in 2015. In a Phase II trial of the drug, 75% of the people responded. The most frequent side effect was nausea. You can watch a YouTube clip that illustrates how the drug works at:
http://www.youtube.com/watch?v=ov2JUHDpt58.

“Rigel To Focus On ITP, DLE And Dry Eye:Strategy Provides Multiple Paths to Phase 3/NDA in Next 2-3 Years.” Digital Journal. Sept. 5, 2013
http://www.digitaljournal.com/pr/1451169#ixzz2eoMbP4Dr

“Fostamatinib (R788) – ITP.” Rigel Pharmaceuticals.
http://www.rigel.com/rigel/ITP

No Treatment, Better Quality-of-Life for Children

The quality-of-life of children with ITP who were treated for the disease was worse than children with ITP who were not treated, according to a survey of 217 parents of children in six countries. To reach this conclusion the researchers examined factors that could account for the variation. They found no significant differences in the initial platelet count, symptoms, or age of the children in the treatment and non-treatment groups that would explain the results. The largest decrease in quality-of-life was for newly diagnosed children treated with prednisone.

Grainger JD,et al. “Quality of life in immune thrombocytopenia following treatment.” Arch Dis Child. 2013 Aug 16.
http://www.ncbi.nlm.nih.gov/pubmed/23956257

IVIg Preferred for Infection-Related ITP

Low platelets and the diagnosis of ITP can be associated with many infectious diseases such as HIV, H. pylori, hepatitis C and B, cytomegalovirus, Epstein–Barr virus, varicella zoster virus, and parvovirus B19. While corticosteroids (ex. Prednisone) are usually the first treatment given for low platelets, in the case of secondary ITP related to infections, IVIg may be a better choice. Corticosteroids suppress the immune system, just when the immune system is trying to fight off an infection.

Smíšková D et al. “Immune thrombocytopenia as a complication of acute infectious diseases - case reports”. Klin Mikrobiol Infekc Lek. 2013 Mar;19(1):15-8.
http://www.ncbi.nlm.nih.gov/pubmed/23945832

Hospitals, Insurance, and Medical Care

Big Variation in Doctor Payments

Some doctors in the US are paid by insurance companies more than twice what other doctors are paid for routine visits and maintenance procedures. The reimbursements were different for the same procedures, the same kind of visits, the same types of patients, and the same places of service. Geographic location explained only about one-third of the variation. To reach these conclusions, researchers looked at 40 million physician insurance claims from 2007, about 75% of them for office visits. While what a doctor is paid may not matter to patients, the resulting left-over costs can add to personal expenses.

Baker L et al. “Private insurers' payments for routine physician office visits vary substantially across the United States.” Health Aff (Millwood). 2013 Sep;32(9):1583-90.
http://www.ncbi.nlm.nih.gov/pubmed/24019363

Kelly JC. “Private Insurer Physician Payment Differences Unexplained.” Medscape Medical News. Sep 11, 2013.
http://www.medscape.com/viewarticle/810862 (free sign-on required)

Get Ready for the New Healthcare Law

Major provisions of the Affordable Care Act (Obamacare) are scheduled to begin this October. That’s when individuals can have a closer look at the new healthcare choices for the coming year. The healthcare options vary by state, since states have flexibility in how they implement the healthcare insurance exchanges and how they deal with Medicaid. Here are three websites that can help you understand how the new law will affect you and perhaps save you money.

http://healthlawanswers.aarp.org/ - creates unique suggestions based on your location, gender, age, number of people in your household, income, and current health-insurance status.

http://rarediseases.org/patients-and-families/state-by-state-insurance-information - click on your state for a contact list and state-specific regulations

https://www.healthcare.gov/ - the official US healthcare site. “Answer a few questions to see if you qualify for lower costs.”

General Health and Medicine

Anti-Depressants Contribute to Bleeding

SSRIs (selective serotonin reuptake inhibitors), a common type of anti-depressant (think Prozac), can affect platelet function and promote blood loss. Multiple studies have shown that this type of drug can increase the chance of brain hemorrhage and stomach bleeding. Serotonin, a mood-elevating protein, is attached and carried by platelets. Serotonin on platelets is also involved in the clotting process. SSRIs block the serotonin from attaching to platelets, interfering with the ability of blood to clot.

Hulisz D. “Do SSRIs Cause Bleeding?” Medscape. Aug 20, 2013
http://www.medscape.com/viewarticle/809492 (free sign-on required)

Gut Health May Impact ITP

At any one time, 70% of the immune cells in the body can be found in the intestine. The bacteria and viruses in the gut (microbiota) can educate these immune cells and determine how they will behave in other parts of the body when they circulate throughout the system. This gut education process includes t-cells, the cells linked to ITP. Diet, hormones, and the environment, among other things, can affect the gut microbiota which, in turn, can impact your mood, your behavior, and your health.

Konkel. L. “The Environment Within: Exploring the Role of the Gut Microbiome in Health and Disease.” Environ Health Perspect. Sept. 2013.
http://ehp.niehs.nih.gov/121-A276/

ITP and Platelet Disorders Research and Treatments

• Thrombopoietin Levels Help Predict TPO Treatment Response
• Rituxan and Vaccines Don’t Mix
• Antiplatelet Antibody Tests Gain Clout
• When Will a Child with ITP Improve?

Hospitals, Insurance, and Medical Care

• Best Hospital List Published
• Some Medical Procedures May Be Useless or Worse

General Health and Medicine

• Exercise Can Change Your Genetics
• Get More Energy – Chew Your Food

ITP and Platelet Disorders Research and Treatments

Thrombopoietin Levels Help Predict TPO Treatment Response

Thrombopoietin stimulates the bone marrow to produce more platelets. However, people with ITP often fail to produce higher thrombopoietin levels to compensate, as seen in those with other low platelet diseases. In a new study, researchers looked at the TPO levels of people with various reasons for low platelets, including 21 with ITP who were treated with the TPO receptor agonists, romiplostim or eltrombopag. The study participants with ITP who had TPO levels greater than 95pg/mL did not respond well to the TPO agents. The authors conclude: “Elevated TPO levels in ITP patients may predict a poor clinical response to treatment with TPO receptor agonists.”

Note: A test to measure TPO levels is available through Quest Diagnostics (test no. 16336).

Makar RS et al. “Thrombopoietin (TPO) levels in patients with disorders of platelet production: Diagnostic potential and utility in predicting response to TPO Receptor agonists.” Am J Hematol. 2013 Aug 1.
http://www.ncbi.nlm.nih.gov/pubmed/23913253

Rituxan and Vaccines Don’t Mix

If you received vaccinations within six months of receiving rituximab (Rituxan®), they were probably ineffective. In a new study, people who received pneumonia and flu vaccines six months after their rituximab treatments had a significantly lower response to these vaccines than the placebo group. Nearly 20% did not respond to the vaccines at all. Rituximab depletes B-cells (cells that make antibodies) and also reduces cellular immunity (the part of the immune system that doesn’t include antibodies), both needed for a healthy immune system. This cellular depletion lasts at least six months and has implications for the lack of response to vaccinations and the increased risk of infection seen in rituximab patients.

Nazi I et al. “The effect of rituximab on vaccine responses in patients with immune thrombocytopenia.” Blood. 2013 Jul 12.
http://www.ncbi.nlm.nih.gov/pubmed/23851398

Antiplatelet Antibody Tests Gain Clout

In the past, many doctors did not order antiplatelet antibody tests for people with suspected ITP since these tests could not accurately diagnose the disease. Now researchers have found another potential use for the tests: helping to predict treatment response and the general course of ITP.

In one study, researchers measured antiplatelet antibodies attached to three different regions on the platelets of people with ITP: GPIIb/IIIa, GPIb/IX, and GPIa/II. Those with antibodies to GPIIb/IIIa had a much higher response to IVIg and prednisone than people with the other antibody types or those diagnosed with ITP who had no measurable antibodies.

In another study, scientists tested the antiplatelet antibody levels of those newly diagnosed with ITP using the MAIPA diagnostic test, then followed these patients to see if there was a correlation between antibody levels and their disease prognosis. The scientists concluded: “…indirect MAIPA positivity at disease onset is associated with more severe hemorrhage and predicts a chronic course in adult ITP patients.”

Liu XF et al. “Relationship between the expression of autoantibodies against platelet membrane glycoprotein and therapeutic effect in primary immune thrombocytopenia.” Zhonghua Xue Ye Xue Za Zhi.(Chinese Journal of Hematology) 2013 Jul;34(7):610-3.
http://www.ncbi.nlm.nih.gov/pubmed/23906456

Grimaldi D et al. “Antiplatelet antibodies detected by the MAIPA assay in newly diagnosed immune thrombocytopenia are associated with chronic outcome and higher risk of bleeding.” Ann Hematol. 2013 Aug 4.
http://www.ncbi.nlm.nih.gov/pubmed/23912633

When Will a Child with ITP Improve?

Most children with ITP improve within a year, regardless of treatment, but some go on to have a much longer struggle with low platelets. Knowing whether a child will recover soon could influence treatment choices. The results of two new studies could help.

Study 1: Researchers found two factors in children who recovered more quickly from the disease: age less than 10 and a sudden onset of low platelets.

Study 2: The T-cell profile, some cytokines (cell-signaling molecules), and several blood proteins were not the same in children who had a short course of ITP and those who developed the chronic form. Because of these physical variations, the study authors concluded that chronic ITP in children is a different disease than the acute version.

Revel-Vilk S et al. “Age and Duration of Bleeding Symptoms at Diagnosis Best Predict Resolution of Childhood Immune Thrombocytopenia at 3, 6, and 12 Months.” J Pediatr. 2013 Jul 24.
http://www.ncbi.nlm.nih.gov/pubmed/23891349

Jernås M et al. “Differences in gene expression and cytokine levels between newly diagnosed and chronic pediatric ITP.” Blood. 2013 Jul 18.
http://www.ncbi.nlm.nih.gov/pubmed/23869085

Hospitals, Insurance, and Medical Care

Best Hospital List Published

US News and World Report staff analyzed data for 5,000 hospitals to determine the best and published their results for all to see. You can search their ratings for adult and children’s hospitals in total, by 16 specialty areas (alas, no hematology) and by region. See: Best Hospitals
http://health.usnews.com/best-hospitals

Some Medical Procedures May Be Useless or Worse

Is newer better? Not always, according to a new study. Of the 343 established medical practices listed in the New England Journal of Medicine from 2001 to 2010, 146 of the recommended drugs or procedures were found to be no better and sometimes worse than the previous practices. More than 40% of the usual practices studied were found to be either harmful or ineffective. Dr. Prasad, lead author of the report has this to say to patients when their doctor recommends a medical procedure: “…the real question is: Does it work? What evidence is there that it does what you say it does? What trials show that it actually works? You shouldn’t ask how does it work, but whether it works at all.”

Bakalar N. “Medical Procedures May Be Useless, or Worse.” New York Times. 2013 July 26
http://well.blogs.nytimes.com/2013/07/26/medical-procedures-may-be-useless-or-worse/

Vinay Prasad, MD et al. “A Decade of Reversal: An Analysis of 146 Contradicted Medical Practices.” Mayo Clin Proc. 2013 August;88(8):790-798.
http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619613004059.pdf

General Health and Medicine

Exercise Can Change Your Genetics

You are born with a set of genes, but some things within your own control can determine whether these genes and the proteins they signal get turned on or off. Exercise is one of them. In a Swedish study, scientists measured physical changes in a group of previously sedentary men after they completed a six-month exercise program. In addition to the weight loss, lower blood pressure, and lower cholesterol they expected, the researchers found changes in more than 17,900 individual locations on 7,663 separate genes in fat cells that could affect their functioning.

Reynolds G. “How Exercise Changes Fat and Muscle Cells.” New York Times. 2013 July 31.
http://well.blogs.nytimes.com/2013/07/31/how-exercise-changes-fat-and-muscle-cells/

Volkov RT et al. “A six months exercise intervention influences the genome-wide DNA methylation pattern in human adipose tissue.” PLoS Genet. 2013 Jun;9(6).
http://www.ncbi.nlm.nih.gov/pubmed/23825961

Get More Energy – Chew Your Food

A group of students were given almonds and asked to chew them 10, 25, or 40 times. When the amount of fecal fat and energy was calculated, those who chewed the almonds the longest gained the most value and energy from the food. Vegetables, fruits, and whole grains are the best source of energy and when they are chewed well the body will absorb the smaller particles more easily. These high-fiber foods will also result in a greater loss of fat since fiber binds to fatty acids to produce energy.

“The benefit of chewing your food more.” Medical News Today. 2013 Jul 18.
http://www.medicalnewstoday.com/articles/263541.php

This e-newsletter is a monthly publication of the Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

Contents:

ITP and Platelet Disorders Research and Treatments

• Low Vitamin D Levels Linked to ITP
• Veltuzimab: New Treatment, Preliminary Results
• Better ITP Treatments, Improved T-cells
• Manufactured Platelets in the Works

Hospitals, Insurance, and Medical Care

• Medicare Enhances Doctor Website
• American Health Lags. Improvements Possible

General Health and Medicine

• Tick Diseases Can Drop Platelets: Protect Yourself
• Born Between 1945 and 1965? Screen for Hepatitis C

ITP and Platelet Disorders Research and Treatments

Low Vitamin D Levels Linked to ITP

In a study of vitamin D status in ITP, the 45 participants with ITP had lower levels of two types of vitamin D in their blood and an increased expression of the vitamin D gene than the 30 healthy controls.  The researchers concluded: “…Vitamin D level and its receptor expression may play an important role in ITP, and vitamin D and its similarities may be a new agent to treat patients with ITP.”

Mu W, et al. “Expression and significance of vitamin d and its receptor mRNA in the peripheral blood of initial immune thrombocytopenic patients.” Chinese Journal of Hematology.2013 Jun;21(3):684-7.
http://www.ncbi.nlm.nih.gov/pubmed/23815922

Veltuzimab: New Treatment, Preliminary Results

Veltuzumab is an anti-CD20 monoclonal antibody that depletes B-cells, similar to rituximab (Rituxan®).  It produced a meaningful response in 55% of the 41 people with ITP tested in a phase 1 study. The treatment can be given by IV or under the skin (sub-cutaneous).  People responded to both infusion methods at all dose levels, with those diagnosed less than a year having a better response rate and longer time to relapse. The positive response and low rate of severe adverse reactions lead to a positive conclusion: ”Sub-cutaneous veltuzumab appears convenient, well-tolerated, and with promising clinical activity in relapsed ITP.”

Liebman HA et al. “Low-dose anti-CD20 veltuzumab given intravenously or subcutaneously is active in relapsed immune thrombocytopenia: a phase I study.”  Br J Haematol. 2013 Jul 6.
http://www.ncbi.nlm.nih.gov/pubmed/23829485

Better ITP Treatments, Improved T-cells

People with ITP were separated into groups to test three different treatments and to compare their levels of T-regulatory (Tregs) cells with healthy controls. One ITP group was treated with prednisone, another with dexamethasone, and the third with rituximab plus dexamethasone. The rituximab plus dexamethasone group fared best with 67% maintaining a sustained response.  When the researchers compared the Tregs of the sustained responders to those who relapsed, they found the responders had an increase in their Tregs. Tregs are important in ITP and other diseases because they play a role in balancing the immune system and preventing autoimmune disease. 

Note: Prior ITP research has shown that people with ITP have a different T-cell profile compared to those in good health and that effective treatments alter their T-cells.

Li ZY et al. “Effect of different therapeutic regimens on regulatory T cells in patients of primary immune thrombocytopenia.”  Chinese Journal of Hematology. 2013 Jun 14;34(6):478-81.
http://www.ncbi.nlm.nih.gov/pubmed/23827100

Manufactured Platelets in the Works

Platelet transfusions can be a problem. Platelets are difficult to obtain, don’t last long in storage, and are prone to contamination. So it is not surprising that scientists are looking for other ways to help people who can benefit from receiving someone else’s platelets. In one option, researchers reprogramed active stem cells to produce blood cells, including platelets, outside of the body.  A company in Scotland is gearing up to mass produce these new cells and test them in humans. In a second option, scientists manufactured two chains of molecules that, when put together, act like platelets to form blood clots. They are looking at using these artificial platelets in wounded soldiers for emergency situations since these artificial platelets could cause too many blood clots in people who aren’t already in a life-threatening situation.

Press Release. “Researchers identify novel approach to create red blood cells, platelets in vitro.” Boston University.  2013 May 30.
http://www.bumc.bu.edu/2013/05/30/researchers-identify-novel-approach-to-create-red-blood-cells-platelets-in-vitro/

“World's first human trials of synthetic blood could take place in Scotland.” MRC Centre for Regenerative Medicine. 2013 May 30.
https://www.univercellmarket.com/@offers/news/view/3484/

Minor S. “A biomedical breakthrough could quicken the clotting process.” Atlanta. June 10, 2013.
http://www.atlantamagazine.com/agenda/2013/06/10/battlefront-biomedicine-georgia-tech

Hospitals, Insurance, and Medical Care

Medicare Enhances Doctor Website

Medicare staff, as part of the new healthcare law, are beginning to collect and preparing to publish physician performance data, including patient ratings and treatment success. As a first step, the Doctor Compare website was updated to include an enhanced search, more accurate contact information, and data on physician specialties. Group practice information will be added in 2014. The goal is help patients make better choices and to help reduce the more than $2.5 trillion the US spends for healthcare each year.

Rau J. “Medicare Enhances Doctor-Rating Website.” Kaiser Health News. 2013 Jun 27.
http://capsules.kaiserhealthnews.org/index.php/2013/06/medicare-enhances-doctor-rating-website/

American Health Lags. Improvements Possible

The US lags behind most other industrialized countries in every major health measure from deaths to diminished quality-of-life. The rankings and individual quality-of-life can be improved by more people embracing a healthy diet, losing weight, exercising, and stopping smoking. But other factors responsible for the dismal ratings are less straight forward. The county level statistics varied considerably indicating that someone’s place of residence is a strong predictor or health and longevity.

Christopher J et al. “The State of US Health, 1990-2010 Burden of Diseases, Injuries, and Risk Factors.” JAMA. 2013 July 10.
http://jama.jamanetwork.com/article.aspx?articleid=1710486

Fineberg HV. “The State of Health in the United States.” JAMA. 2013 July 10.
http://jama.jamanetwork.com/article.aspx?articleid=1710485

Fox M. “Americans live a little longer, still lag other rich countries.” NBC News. 2013 July 10.
http://www.nbcnews.com/health/americans-live-little-longer-still-lag-other-rich-countries-6C10588107

General Health and Medicine

Tick Diseases Can Drop Platelets: Protect Yourself

The best way to prevent illnesses caused by ticks is prevention. Here are some suggestions: If you walk in the woods, wear long pants and long sleeves. When you leave a tick-prone area, check for ticks immediately and shower within two hours. If you find a tick, remove it with a tweezers, grabbing close to where it is attached to the skin. Ticks must stay in place for 36 hours to infect someone, so immediate attention is important.

Note: Ticks can transmit Lyme disease, Rocky Mountain spotted fever, babesiosis, and ehrlichiosis, all of which can cause low platelets. “Protect Yourself Against Tick-Borne Disease.” US Food and Drug Administration. 2013 June 26.
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm358486.htm

Born Between 1945 and 1965? Screen for Hepatitis C

The U.S. Preventive Services Task Force recommends screening all adults born between 1945 and 1965 for hepatitis C, even if they have no symptoms of liver problems.  People born between those dates have a greater risk of having hepatitis C than others because infusion-related infection was more likely during that timeframe. Treating the disease, if found, can prevent serious liver complications. Repeat testing is not necessary.

Note:  A healthy liver is very important for people with ITP since the liver makes thrombopoietin and clotting factors.
Moyer VA. “Screening for Hepatitis C Virus Infection in Adults: U.S. Preventive Services Task Force Recommendation Statement.” Ann Intern Med. 25 June 2013
http://annals.org/article.aspx?articleid=1700383

This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org

ITP and Platelet Disorders Research and Treatments

• FDA Links Thrombosis with IVIg
• Older Patients Have Reduced Response to Splenectomy
• Several Factors Predict Risk of Blood Clots
• Switch TPO Treatments: Could Help

Hospitals, Insurance, and Medical Care

• FDA Makes It Easier to Report Medical Problems
• US Clinical Trials: Procedures Under Fire

General Health and Medicine

• Roundup® Enhances Toxins, Promotes Inflammation
• Live Longer: Be a Vegetarian

ITP and Platelet Disorders Research and Treatments

FDA Links Thrombosis with IVIg

People receiving IVIg, an infusion of immune globulin, have an increased chance of developing a blood clot (thrombosis) which can give them a heart attack, stroke, or other blood clotting problem, according to the Food and Drug Administration (FDA).  The FDA came to this conclusion after reviewing a large medical claims database and their adverse event reports.  Because of this finding, the FDA is requiring all manufacturers of IVIg to change the boxed warnings on the product labels to highlight the risk of thrombosis plus add instructions on what to do if a clot develops.

Note: Low platelets do not protect someone from developing unwanted blood clots. 

“FDA Safety Communication: New boxed warning for thrombosis related to human immune globulin products.” June 10, 2013
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm355986.htm

Older Patients Have Reduced Response to Splenectomy

People with ITP who were older than 65 years when they had a splenectomy had three times more bleeding problems, stayed in the hospital twice as long, and had less favorable responses than those who were younger than 65 when they had the operation, according to recent research tracking 218 patients.  Patients between 65 and 70 in good health had fewer problems than others in the ‘elderly’ category.  The rate of laproscopic and open surgeries was about the same in the two groups.

Gonzalez-Porras JR et al. “Safety and efficacy of splenectomy in over-65 year old patients with immune thrombocytopenia.” Eur J Haematol. 2013 May 17.
http://www.ncbi.nlm.nih.gov/pubmed/23679653

Several Factors Predict Risk of Blood Clots

Despite low platelets, many people with ITP are prone to get blood clots.  Of the 165 people with ITP followed in a recent study, almost 13% developed a clotting problem.  The major risk factor was the presence of antiphospholipid antibodies, antibodies against phospholipids in the blood, a protein needed for the blood to clot.  Other risk factors were high blood pressure and lupus anticoagulant (antibodies that bind to phospholipids and proteins associated with the cell membrane).  

Kim KJ et al. “Thrombotic risk in patients with immune thrombocytopenia and its association with antiphospholipid antibodies.” Br J Haematol. 2013 Jun;161(5):706-14.
http://www.ncbi.nlm.nih.gov/pubmed/23530551

Switch TPO Treatments: Could Help

A recent case report reminds us that the thrombopoietin (TPO) agents, romiplostim (Nplate®) and eltrombopag (Promacta®/Revolade®) work slightly differently.  If one fails, switching to the other one can be effective.  In this particular report a patient failed steroids, splenectomy, IVIg, rituximab, and finally, eltrombopag.  Romiplostim was successful in raising the platelet count.

Piccin A et al, “Idiopathic thrombocytopenic purpura resistant to eltrombopag, but cured with romiplostim.” Blood Transfusion. 2013 Apr 17.
http://www.bloodtransfusion.it/articolosing.aspx?id=000433

Hospitals, Insurance, and Medical Care

FDA Makes It Easier to Report Medical Problems

The Food and Drug Administration (FDA) encourages consumers to report problems with the products they regulate (drugs, medical devices, biologics, food, cosmetics, and supplements) through their MedWatch system. To make the process easier and encourage more public input, the organization has released a simplified form.  Anyone can complete the form and notify the FDA of side effects, quality problems, or other serious issues.  When the FDA sees a pattern in these reports they can require a label change, take a product off the market, and more. You can access the new form at http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM349464.pdf  or https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

“WANTED: Consumers to Report Problems.” FDA Consumer Updates. 2013 Jun 3.
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm354560.htm

US Clinical Trials: Procedures Under Fire

The US Government funds many clinical research studies; but some of them do not have a sufficient ethical review and problems in the studies may be discovered too late, according to experts.  Some factors contributing to these issues are inexperienced Institutional Review Board members, increased numbers of clinical trial participants, international recruitment, financial conflicts of interests, and lack of attention to lay input. While there are many areas that could be improved, the safety and transparency of clinical studies is much better than in the past. 

Ammann AJ. “US clinical-research system in need of review.”  Nature. 05 June 2013.
http://www.nature.com/news/us-clinical-research-system-in-need-of-review-1.13126?WT.ec_id=NATURE-20130606

“President’s Bioethics Commission Releases Report on Human Subjects Protection.” 2011Dec 15
http://bioethics.gov/node/559

Note: PDSA has information for people who are considering participation in a clinical trial at
http://www.pdsa.org/about-itp/clinical-trials.html

General Health and Medicine

Roundup® Enhances Toxins, Promotes Inflammation

Residues of glyphosate, the active ingredient in Roundup, are found in many foods containing wheat, soy, corn, and sugar. This herbicide inhibits the cytochrome P450 (CYP) enzyme in people, the enzyme that plays an important role in detoxifying harmful chemicals we breathe and eat. This impaired detox process, over time, disrupts gut bacteria and increases inflammation, promoting the many diseases associated with the Western diet such as obesity, diabetes, heart disease, and more.

Samsel A, Seneff, S. “Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseases.” Entropy 2013, 15(4), 1416-1463.
http://www.mdpi.com/1099-4300/15/4/1416

Note: Exposure to toxic substances can reduce the platelet count.  See:
http://www.pdsa.org/about-itp/warnings.html

Live Longer: Be a Vegetarian

People in all vegetarian categories, including some who occasionally eat fish and a little meat, had a lower mortality rate than the national average, concluded researchers in a study of 73,308 Seventh-day Adventist men and women. Those who considered themselves vegan fared the best.  Men’s disease and mortality rate showed more improvement over the national average than women with this diet regimen.

Orlich MJ et al. “Vegetarian Dietary Patterns and Mortality in Adventist Health Study 2.” JAMA Intern Med. 2013;():1-8.
http://archinte.jamanetwork.com/article.aspx?articleid=1691919