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Neutropenia Risk Prompts REMS for Antipsychotic Clozapine

clozapinelabelThe Food and Drug Administration (FDA) has announced changes to prescribing information for the atypical antipsychotic clozapine and a new shared risk evaluation and mitigation strategy (REMS) due to continuing safety concerns and current knowledge regarding the risk of severe neutropenia. Clozapine is indicated for the treatment of resistant schizophrenia and to reduce the risk of recurrent suicidal behavior in schizophrenia and schizoaffective disorders.

The requirements to monitor, prescribe, dispense, and receive clozapine are now incorporated into the new shared Clozapine REMS Program, which replaces the six individual clozapine registries. The REMS program includes all clozapine medicines in order to provide a centralized point of access for prescribers and pharmacists in managing the risk of neutropenia. Starting October 12, 2015, clozapine will be available only through the Clozapine REMS Program.

Important changes to the neutropenia monitoring recommendations and treatment algorithm for clozapine include:

  • Absolute neutrophil count (ANC) is the only test result accepted in the Clozapine REMS Program to monitor for neutropenia.
  • If the patient is an outpatient, the ANC must be reported to the Clozapine REMS Program before clozapine is dispensed.
  • If the patient is an inpatient, the ANC must be reported within 7 days of the most recent blood sample.
  • Patients with benign ethnic neutropenia (BEN) can now be treated with clozapine.

This article originally appeared on MPR.

The Pope’s Visits with President Obama Highlights the Pope’s Blessing of Ariana-Leilani

Pope Francis blesses Ariana-Leilani at the Vatican

Pope Francis blesses Ariana-Leilani at the Vatican

As a followup to Pope Francis’s blessing of Ariana-Leilani, in his meeting with Dr. Ariel Rosita King at the Vatican, urging Ariana-Leilani’s safe liberation from abuse, neglect and potentially fatal illness, the Pope has arrived in Washington DC to deliver his message to uplift those who are persecuted and the poor.

We hope that President Obama listens to his messages, and finally takes actions to protect Ariana-Leilani who lives several blocks from the White House in Washington, DC.

Please sign the petition to Save Ariana-Leilani and make Pope Francis’ blessings and wishes a reality.GoPetition

Girl With Rare Blood Disorder Works to Inspire Others

Kara Loader is just like any sixth grade girl. She’s been playing the violin for seven years, loves softball, and says she’s really good at school. She’s a huge Taylor Swift fan, and she has a lot of friends. But something sets Kara apart from her friends and classmates, though it’s nothing you’d be able to see on the outside.

11-year-old Kara has been battling severe congenital neutropenia since birth. Neutropenia is a rare blood disorder, meaning her body doesn’t make enough neutrophils in her white blood cells. So when Kara gets sick, or even gets a cut, her body may not fight off the infection as quickly. 

Kara has to be extra cautious and carry a medical kit with her at school, and when she gets really sick, Kara visits a hematology and oncology specialist at the Cleveland Clinic. She takes a shot of neupogen every day, which helps her build her neutrophils. However, she has to watch how much she takes, because the drug increases the risk of developing leukemia.

Kara has become a bit of a celebrity of her own in the neutropenia community. She said her video inspired a woman in her 30’s to talk about the disorder for the first time .”She always thought that it wasn’t okay, like, it wasn’t normal to tell people that you actually have it. And she said that my video actually gave her the courage to tell it to other people,” Kara said.

Kara said she has one message for anyone else battling neutropenia: “I would tell them everything’s going to be okay.” Kara and her family remain in contact with families they have encountered in the hospitals and at a yearly conference for neutropenia.

Ariana-Leilani also has suffered from neutropenia.   Sign her petition to assure she gets proper treatment and protection from abuse.

Read more: Kara Loader

 

Pope Francis Blesses Ariana-Leilani

Pope Francis blesses Ariana-Leilani at the Vatican

Pope Francis blesses Ariana-Leilani at the Vatican

On a historical occasion, Pope Francis blessed Ariana-Leilani, in his meeting with Dr. Ariel Rosita King urging Ariana-Leilani’s safe liberation from abuse, neglect and potentially fatal illness.   Before an audience of thousands at the Vatican, he placed his hand upon her picture and gave his blessings after hearing her tragic story.   Please sign the petition to Save Ariana-Leilani and make Pope Francis’ blessings and wishes a reality.

 

GoPetition

 

Informative Presentations and Photos from the 2014 National Neutropenia Network Family Conference

The 2014 Neutropenia Family Conference was the most informative and well attended.

Copies of the informative presentations from the 2014 Conference on neutropenia are now available, including those by Dr. David Dale, Dr. Boxer, Dr. Bonilla, and Dr. james Connelly:

 

Read More: National Neutropenia Network Family Conference 2014

 

 

Pediatric white blood cell disorders

White blood cells disorders involving a specific type of white blood cell include:

  • Neutropenia. Neutropenia (noo-troe-PEE-nee-uh) is a low number of neutrophils, a type of white blood cell that fights infections of fungi and bacteria. Neutropenia can be caused by cancer or by diseases, disorders or infections that damage bone marrow. In addition, certain medications and other diseases or conditions can cause neutropenia.
  • Lymphocytopenia. Lymphocytopenia (lim-foe-sie-toe-PEE-nee-uh) is a decrease in lymphocytes, the type of white blood cell that, among other tasks, protects your body from viral infections. Lymphocytopenia can result from an inherited syndrome, be associated with certain diseases, or be a side effect from medications or other treatments.
  • Monocyte disorders. Monocytes help get rid of dead or damaged tissue and regulate your body’s immune response. Infections, cancer, autoimmune diseases and other conditions can cause an increased number of monocytes. A decreased number can be the result of toxins, chemotherapy and other causes.
  • Eosinophilia. Eosinophilia (e-o-sin-o-FIL-e-uh) is a higher than normal number of eosinophil cells, a type of disease-fighting white blood cell. Eosinophilia can be caused by a variety of conditions and disorders, most commonly by an allergic reaction or a parasitic infection.
  • Basophilic disorders. Basophils account for only a small number of white blood cells, but they have a role in wound healing, infection and allergic reactions. A decreased number of basophils can result from high thyroid hormone levels, allergic reactions or infections. An increased number can be caused by certain types of blood cancer, low thyroid hormone levels or other disorders.

Source: Mayo Clinic:  Pediatric white blood cell disorders

 

Neutropenia Family Conference 2014 July 11- 13th Ann Arbor, MI

IMG_0464Participants in the 2014 Neutropenia Family Conference will have a chance to speak with the experts, hear presentations covering the latest treatment and research, and to participate in programs geared toward managing life with neutropenia in it. It is a weekend of learning and fun for the children. There will be many opportunities for participants to get to know each other in a comfortable and nurturing setting.

This year sessions will start on Friday July 11th at 1:00 PM with a choice of workshops and an opening session for all.  The popular Friday Meet and Greet Reception has not gone away. As in the past families and presenters will have a chance to mingle and get to know each other while enjoying a filling assortment of appetizers.

Private one-on-one sessions with the doctors will be offered towards the end of the conference on Saturday afternoon instead of before the opening session on Friday.This should make them more productive than ever as patients will have the benefit of knowledge gained at workshops.

This year with the first ever Friday Kids Kamp parents will have the opportunity to attend the educational sessions on Friday afternoon from 1:00 to 5:00 knowing their children are having fun in a safe environment with their peers. Children will be welcomed back to Kids Kamp on Saturday from 8:30 to 4:30 where another day of learning and fun activities will be presented by the Child Life staff from the University of Michigan.

Kids Kamp is now divided into two age groups. One for ages 3-5 and one for ages 6 and older.

On Saturday evening there will be a family dinner where participants can relax and enjoy time with new friends.

The 2014 Neutropenia Family Conference comes to a close on Sunday, July 13 after breakfast and a final session.

Friday, July 11, 2014 at 1:00 PM Sunday, July 13, 2014 at 11:00 AM (EDT), Ann Arbor, MI

To learn more and/or to register go to Neutropenia Family Conference. www.neutropenianet.org.

 

Honey Said to Potentially Prevent Low White Blood Count

The Mayo Clinic notes that honey may be a promising and inexpensive way to prevent low white blood cell count caused by chemotherapy. In one small trial, 40 percent of cancer patients who were known to be at risk of neutropenia (very low blood count) had no further episodes of the condition after taking two teaspoons daily of therapeutic honey during chemotherapy. More research is needed, but the remedy could hold great potential.

Read More: Healing Honey  and Health Benefits of Honey

Amgen’s Neulasta One of the Top Selling Drugs

Medscape News published a list of the top selling drugs in the United States based on a list produced by IMS Health.   Amgen’s Neulasta, a long acting form of neupogen for the treatment of neutropenia (the treatment denied but needed by Ariana-Leilani), made tenth place at $3.6 billion in annual sales.   Read more at Medscape

Short Video Documentary “Small Cries”; A DC American Tragedy

The Save Ariana-Leilani Coalition is pleased to announce the world wide release of the video documentary “Small Cries.”    The six minute documentary tells the story of how the “child protection” systems in the United States are failing, and how Ariana-Leilani is a victim of that failure.  This short and compelling documentary features exclusive interviews, including an interview with Dr. Joy Silberg, who speaks of the error in judgment that many child protective services make in certain abuse and neglect cases.   Very educational and inspiring, and Ireneo Namboka, an international human rights advocate and former UN official.

Definitely a “two thumbs up” “must see” documentary.

Watch the video, sign the petition, save a life:

Documentary “Small Cries;” The Real Ariana-Leilani Story

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