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 Research and Treatments
- Dexamethasone Plus Rituximab Yields Higher Platelet Response Rate in Chronic ITP Patients
- ITP Patients with Autoimmune Thyroid Disease May Be More Difficult to Treat
- New summary of H. pylori Tests and Treatments
- X-linked Thrombocytopenia Patients Have Higher Infection Rate After Splenectomy
Hospitals, Insurance, and Medical Care
- A Rare Disease Advisory Panel Will be Included in Comparative Effectiveness Research (CER)
- Several Childhood Vaccines Worry Parents More Than Others
General Health and Medicine
- Killer Fungus C. Gattii Has Sickened Humans and Animals in the Pacific Northwest
- Researcher Suggests Enhancing the Placebo Effect
ITP Research and Treatments
DEXAMETHASONE PLUS RITUXIMAB YIELDS HIGHER PLATELET RESPONSE RATE IN CHRONIC ITP PATIENTS
In this Italian study, patients were separated into two groups, one that received four days of dexamethasone (a type of corticosteroid) and another that received four days of dexamethasone plus rituximab (Rituxan). After six months, 63% of the patients in the dexamethasone plus rituximab group had a platelet count greater than 50,000 versus 36% of the patients who received only dexamethasone. However, the patients receiving combination therapy had more adverse events.
Zaja F, et al. “Dexamethasone plus rituximab yields higher sustained response rates than dexamethasone monotherapy in adults with primary immune thrombocytopenia.” Blood. 2010 Apr 8;115 (14):2755-62.
http://www.ncbi.nlm.nih.gov/pubmed/20130241
ITP PATIENTS WITH AUTOIMMUNE THYROID DISEASE MAY BE MORE DIFFICULT TO TREAT
About 24% of people with ITP have an autoimmune thyroid disease, with the diagnoses possibly separated by years. The presence of these two conditions may signal a more significant problem with the patient’s immune system and a reduced response to ITP treatments. Since some ITP patients recover when their underlying thyroid condition is treated, the authors suggest that physicians consider testing for thyroid hormones when treating ITP patients.
Cheung E and Liebman H.. “Thyroid disease in patients with immune thrombocytopenia.” Hematol Oncol Clin North Am. 2009 Dec 23 (6):1251-60.
http://www.ncbi.nlm.nih.gov/pubmed/19932432
NEW SUMMARY OF H.PYLORI TESTS AND TREATMENTS
The New England Journal of Medicine recently published a clinical review article that details the tests and treatments for H. pylori, a type of bacteria found in the gastric system. The presence of H. pylori can be easily detected using a breath or stool test and can be eradicated with a combination of antibiotics. Note: the platelets of some ITP patients infected with H. pylori improved after the bacteria were eradicated.
McColl KE. “Clinical practice. Helicobacter pylori infection.” N Engl J Med. 2010 Apr 29;362 (17):1597-604.
http://www.ncbi.nlm.nih.gov/pubmed/20427808
http://www.innovares.com/SITOITALIANO/prodotti/hpsa/hpsa_letteratura/linee_guida.pdf
X-LINKED THROMBOCYTOPENIA PATIENTS HAVE HIGHER INFECTION RATE AFTER SPLENECTOMY
X-linked thrombocytopenia (XLT), caused by a mutation of the Wiskott-Aldrich syndrome (WAS) protein gene, is a male, low-platelet disease, accompanied by eczema (flaky skin), an increased risk of infections, and possibly other attributes. In a recent study of 173 XLT patients from 12 countries, researchers concluded that there was a good chance of long-term survival for these patients, along with a high probability of disease-related complications. Splenectomized boys and men with XLT had almost as many bleeding episodes as those without a splenectomy and a higher incidence of severe infection.
Albert MH, et al. “X-linked thrombocytopenia (XLT) due to WAS mutations: clinical characteristics, long-term outcome, and treatment options.” Blood. 2010 Apr 22;115 (16):3231-8.
http://www.ncbi.nlm.nih.gov/pubmed/20173115
Hospitals, Insurance, and Medical Care
A RARE DISEASE ADVISORY PANEL WILL BE INCLUDED IN COMPARATIVE EFFECTIVENESS RESEARCH
The new US healthcare law, the Patient Protection and Affordable Care Act (PPACA), includes rules concerning federal comparative effectiveness research (CER) studies used to determine which of several approaches to treatment work best. For rare diseases (including ITP), the law stipulates that an expert advisory panel consisting of patients and clinicians provide input to the relative value and feasibility of the proposed research. There are also provisions in the law to avoid decisions based entirely on cost considerations and to avoid insurance and patient discrimination based on the CER findings.
As reported in the Plasma Protein Therapeutics Association Health Policy Newsletter, April 2010, Vol. 6, Issue 2.
Find more information and links to the entire bill at:
http://en.wikipedia.org/wiki/Patient_Protection_and_Affordable_Care_Act
SEVERAL CHILDHOOD VACCINES WORRY PARENTS MORE THAN OTHERS
In a recent survey of 1,500 parents, almost all agreed that vaccines are a good way to protect their children from disease. However, about half of the parents had safety concerns about childhood vaccines and 12% had refused at least one vaccination for their child. The most frequently cited safety concerns were for the human papillomavirus (HPV), meningococcal, measles/mumps/rubella (MMR), and chickenpox (varicella) vaccines.
Freed GL, et al. “Parental vaccine safety concerns in 2009.” Pediatrics. 2010 Apr; 125 (4):654-9.
http://www.ncbi.nlm.nih.gov/pubmed/20194286
“The Vaccines that Worry Parents Most.” Dr. Mercola newsletter, March 27, 2010:
http://articles.mercola.com/sites/articles/archive/2010/03/27/vaccines-that-worry-parents-most.aspx
For more information on vaccine safety contact the National Vaccine Information Center:
www.nvic.org
General Health and Medicine
KILLER FUNGUS C. GATTII HAS SICKENED HUMANS AND ANIMALS IN THE PACIFIC NORTHWEST
A tropical fungus, Cryptococcus gattii, has been infecting (and sometimes killing) people and animals in the Northwest US and British Columbia at an increasing rate, although the incidence is still extremely low. Now the fungus, found in trees and in the soil, is mutating and spreading to other geographic areas. The infection, characterized by chest pain, cough, shortness-of-breath, fever, and possibly meningitis, is treated with anti-fungal drugs. Those who are immune-compromised are particularly susceptible.
Gardner, A. “Killer fungus seen in Pacific Northwest” CNN Health April 23, 2010:
http://www.cnn.com/2010/HEALTH/04/22/killer.fungus.pacific.northwest/index.html
Byrnes EJ 3rd. “Emergence and pathogenicity of highly virulent Cryptococcus gattii genotypes in the northwest United States.” PLoS Pathog. 2010 Apr 22;6 (4):e1000850.
http://www.ncbi.nlm.nih.gov/pubmed/20421942
RESEARCHER SUGGESTS ENHANCING THE PLACEBO EFFECT
Instead of ignoring or dismissing it, Harvard professor Ted Kaptchuk suggests embracing the placebo effect to improve health with lower risk. In some studies for knee surgery, antidepressants, acupuncture, and other treatments, the placebo group had similar or better results than the treatment group. Kaptchuk feels it is the medical ritual (the expectations, conversations, and mechanics) that explains the positive results. He is leading a project, funded by the National Institutes of Health, to learn more.
Herper, M, et al. “The Nothing Cure.” Forbes Magazine March 29, 2010:
http://www.forbes.com/forbes/2010/0329/opinions-placebo-harvard-health-medicine-ideas-opinions.html
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