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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

 

 

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

ABC’s Robin Roberts Urges You to Be a Bone Marrow Donor (Day 5 of 19 Days of Activism)

English: Logo of National Marrow Donor Program

“In June of 2012, ABC’s Good Morning America anchor, Robin Roberts announced that she had been diagnosed with myelodysplastic syndrome (MDS) and her best treatment option was a bone marrow transplant. Fortunately her sister Sally-Ann was a perfect match and became her marrow donor. More than 70% of patients will not have a match in their family. They depend on the Be The Match Registry® to find that match — someone like you.

As a Be The Match Ambassador of Hope, Robin is asking others to join the Be The Match Registry as a potential marrow donor. Together we can help eliminate blood cancer.”   Click here for more information

Also, sign the petition to save 10 year old Ariana-Leilani, who needs life saving medicine to cause her bone marrow to produce enough neutrophils:

GoPetition for ariana-leilani

European approval opens the door for Grastofil

Neutrophile segmented Granulocyte

Neutrophile segmented Granulocyte (Photo credit: Wikipedia)

STADA Arzneimittel AG has strengthened its activities in the biosimilars area and in-licensed a filgrastim product from the largest Canadian owned pharmaceutical company Apotex Inc. The biosimilar, marketed under the name Grastofil, received approval from the European Commission for the treatment of Neutropenia in adults. The condition results in an abnormally low number of neutrophil granulocytes, a type of white blood cell that is essential for a functional immune system. STADA shall assume sales of the biosimilar for nearly all EU countries. Sales are planned to commence in 2014.

Grastofil will be available in pre-filled syringes with two different active ingredient concentrations for intravenous or subcutaneous injection. “The effectiveness, tolerability and quality of Grastofil are comparable to the original product within the approved area of application,” explains Mack. “This was proven in comprehensive, comparative studies with the original product and has now been confirmed with the approval of the European Commission. With Grastofil, we will be able to offer an inexpensive alternative therapy in the future that doctors, patients and even the public health care system will benefit from.”

Neutropenia can arise as a result of cytotoxic chemotherapy, for example. Grastofil promotes the generation of neutrophil granulocytes and their release from the bone marrow and, therefore, can be used to support chemotherapy for malignant diseases in order to reduce the risk of neutropenia-induced infection as well as to support the antibiotic treatment of this type of infection. The approval also comprises the application to mobilize peripheral blood stem cells.

A biosimilar is a drug with a protein produced by biotechnological process as an active pharmaceutical ingredient and developed in comparison to an original product which is already on the market, and that is so similar to this original product that the biosimilar has proven therapeutic equivalence.

Ariana-Leilani suffers from Severe Chronic Neutropenia — where her neutrophil levels are at life threatening low levels making her prone to fatal infection.   She needs medicine to control her condition.  Please sign her petition:

GoPetition for ariana-leilani

Related articles

Amgen To Buy Roche Rights to Neutropenia Drugs from Roche In 100 Markets

AMGen Corporate Logo, 1983

AMGen Corporate Logo, 1983 (Photo credit: Wikipedia)

Amgen is acquiring Roche‘s rights to the neutropenia drugs filgrastim and pegfilgrastim in approximately 100 markets outside the United States, effective January 1, 2014, for an undisclosed price.

Filgrastim and pegfilgrastim are marketed by Amgen in the United States and Europe under the trade names Neupogen® and Neulasta®, respectively. Since 1989, Roche has held the rights to filgrastim and pegfilgrastim under license from Kirin-Amgen, a joint venture between Amgen and Japan’s Kirin Holdings, in Eastern Europe, Latin America, Asia, the Middle East, and Africa.

In those regions of the world, filgrastim and pegfilgrastim generated a combined approximately $200 million in sales last year. Roche had not disclosed sales for either drug last year or earlier this year.

The drugs are designed to reduce the risk of infection in patients receiving chemotherapy by boosting white blood cell counts.

Japan’s Kyowa Hakko Kirin will continue to retain product rights and to market filgrastim and pegfilgrastim in parts of Asia, including China and Japan.

Alternative to Amgen’s Neupogen Ready to Launch

עברית: פועלת במפעל "אסיא"

Filgrastim stimulates the production of neutrophils, a type of white blood cells important in the body’s fight against infection. One treatment option for individuals with certain types of cancers is myelosuppressive chemotherapy which targets rapidly dividing tumor cells. Since rapidly dividing normal cells, such as bone marrow precursor neutrophils are also vulnerable to the cytotoxic effects of myelosuppressive chemotherapy, lower numbers of neutrophils are produced, a condition called neutropenia, which increases the risk of severe infection. Amgen launched filgrastim, under the Neupogen brand, in 1991 to decrease the incidence of infection, as manifested by febrile neutropenia in patients with nonmyeloid malignancies receiving myelosuppressive anticancer drugs associated with a clinically significant incidence of febrile neutropenia.

Dr. Karl Welte is the researcher who discovered neupogen (GCSF).   Dr. Welte has been a major advocate for Ariana-Leilani to receive life saving GCSF to save her life.

Since Amgen’s principal European patent related to filgrastim was due to expire in August 2006, the company launched a long acting formulation, a pegylated filgrastim (pegfilgrastim), under the brand name Neulasta in 2002. The move, part of Amgen’s product lifecycle management strategy, resulted in Neulasta replacing Neupogen in major treatment centers. Amgen’s US patent for Neupogen expires in December 2013. Although Neulasta’s patent does not expire until December 2015, the launch of generic competition could adversely affect sales of both brands.

Teva is a serious player in the international biosimilars market. Teva also has two long acting filgrastim formulations in late stage development.  In August 2012, the FDA approved Teva‘s (TEVA) Neutroval (tbofilgrastim). The approval, which was based on a full Biologic License Application (BLA) rather than under the FDA’s new biosimilar approval pathway, would allow Teva to compete directly with Amgen‘s (AMGN) US filgrastim franchise, worth $4.2 billion at the end of 2012. However, due to a court ruling related to Amgen’s filgrastim patents, Teva may not start selling its product in the US until the 10th of November 2013, in just six weeks’ time.  Read More: Seeking Alpha

Talia Joy Castellano Dead: Inspirational YouTube Child Star Dies After 6-Year Battle With Cancer

We regret to announce that Talia Joy Castellano lost her battle to cancer yesterday.  “The bubbly girl who wanted to do something about childhood cancer.”   #‎prayfortalia Talia is 13, a little older than Ariana-Leilani.   They both became sick at about the same age.  In September, Ellen DeGeneres invited the Florida native to appear on her show and revealed that Talia had been chosen to be an honorary CoverGirl.

As Talia says, there should be so many other people helping people.   There is still time to help Ariana-Leilani who suffers from untreated Severe Chronic Neutropenia in Washington DC.   Please sign her petition today:

GoPetition

Question of the Day: Is a Medical Experiment on Ariana-Leilani a Matter of “National Security?”

Graph Showing Worsening Neutropenia Condition of Ariana-Leilani

Worsening Neutropenia Condition of Ariana-Leilani

By all indications, the failure of the USA to 10 year old Ariana-Leilani’s Severe Chronic Neutropenia with the life saving neupogen medicine she needs to boost her critically low ANC to protect her from potentially fatal infection has all the trappings of the medical experiments that hospitals like Medstar Georgetown University Hospital have conducted for the CIA in the past in the name of “National Security.”    Her ANC’s (the measure of her resistance to infection)  continue to be severely low (see graph), yet after five years no toxicology tests have been done to eliminate its cause, and Medstar Georgetown University Hospital continues to engage in this apparent medical “experiment” placing Ariana-Leilani at risk of fatal infection.

Seal of the C.I.A. - Central Intelligence Agen...The recent revelations of the USA’s collection of massive amounts of personal data on its own USA citizens using the FISA court and PRISM programs, in violation of the US Constitution’s right to privacy, and President Obama’s proclamation  today that this wholesale invasion of privacy is “legal” — despite direct conflict with the right to privacy in the USA are very disturbing.

Ariana-Leilani and Willi King

Ariana-Leilani and Willi King

Is this medical experiment by these DC based CIA affiliated institutions also being allowed as a matter of “national security” like the Tuskegee and MK-ULTRA experiments of the past?   Voice your outrage.   Sign the petition to save Ariana-Leilani.

Sign the petition to Save Ariana-Leilani: 

GoPetition

Inspirational 10 Year Old, “Live Like Bella,” Loses 6 year Fight to Cancer

Live Like Bella 10 Year Old Loses Fight to Cancer

Live Like Bella 10 Year Old Loses Fight to Cancer

Bella Rodriguez-Torres died after a 6-year battle with rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to bones.   When she was first diagnosed stage IV cancer at 4 years old, doctors only gave Bella four months to live. She surprisingly recovered, and started to walk on her own two feet and the tumors soon disappeared. However, the cancer returned throughout her life, necessitating numerous rounds of chemotherapy, radiation and surgery. She still didn’t give up.

Supporters of Bella began to “Live Llke Bella,” a motto for pursuing everything that life has to offer.
“Live Like Bella means to eat something and enjoy it, savor it, go play with gusto, even the simple things. Do them and enjoy them. Learn something new, get out of your comfort zone and enjoy life,” Ralph explained.

LeBron James adopted the motto. He and his teammate Dwyane Wade wrote the slogan on their shoes before the Miami Heat’s game against the Indiana Pacers on Tuesday.

Live like Bella, please sign 10 year old Ariana-Leilani’s Petition to get needed medicine and medical care for her life-threatening Severe Chronic Neutropenia:

GoPetition

Clouds by Zach Sobiech

Inspirational cancer victim Zach Sobiech, sings his original infectious song about his unfortunate circumstances with over 4 million youtube views.  He recently lost his battle to cancer.  Let’s keep fighting so no children will lose their lives to cancer and other childhood illnesses.  He is an inspiration to all children.  Worth a listen:

Read more: Teen who penned moving farewell song ‘Clouds’ loses battle with cancer