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Sepsis: The Uncontrollable Killer

sepsis

Just hours before he fell ill with sepsis and went to the hospital, and never went home.

Ariana-Leilani has been diagnosed with neutropenia — low immunity causing high risk of infection.   Although she can look perfectly normal, a few hours can mean the difference between life and death.   Neutropenic patients are particularly prone to sepsis, which is the most common killer of Americans.   It is an infection can suddenly turned into the life-threatening condition called septic shock.

Most vexing about sepsis is that doctors can only treat the symptoms. They don’t have an effective treatment for the underlying condition — antibiotics don’t work.

One thing that can help is prompt medical attention — especially when an infection is accompanied with some of the symptoms of sepsis, such as confusion, rapid heartbeat, shaking and skin rash.   In a neutropenic patient, like Ariana-Leilani, GCSF is one of the medicines that can boost the immune system.

Read more: Sepsis, A Wily Killer, Stymies Doctors’ Efforts To Tame It

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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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How Plerixa Fights Neutropenia

English: Reference ranges for white blood cell...

Ariana-Leilani suffer from Severe Chronic Neutroepnai.   Neutropenia is a condition characterized by the lack of a type of white blood cells, also known as neutrophils, in one’s blood circulation. Patients with neutropenia who receive plerixafor become prone to oral, skin, genital infections and in worst cases, a fatal whole-body infection.

Previously, it was known that Plerixafor increases the concentration of these white blood cells in the blood by inhibiting a protein called CXCR4. This inhibition prevents neutrophils in the blood stream from returning to the bone marrow, which is the primary compartment where the white blood cells are stored and released. It is therefore commonly accepted that the efficacy of the drug arises only from the release of these white blood cells from the bone marrow.

However, scientists at SIgN found that the inhibition of CXCR4 by the drug actually plays a dual role – it increases the neutrophil count in the blood through their release from the lungs, while simultaneously promoting their retention in the blood stream. Results of the study were published in the Journal of Experimental Medicine (JEM).

Discovery of this additional mode of action not only provides a deeper understanding on the drug’s mechanism; it also contributes to a more effective use of the drug, which may help to reduce the risk of bacterial infections in neutropenic patients.

“We have identified the precise mechanisms of plerixafor treatment, which has important implications on its usage. We can understand through this study the effectiveness or limitations of the drug on certain patients and thereafter craft new clinical approaches to better treat them. Our study forms a conceptual framework to establish improved therapeutic strategies for neutropenia,” said team leader Dr. Ng Lai Guan from SIgN.

The article can be found at: Devi S et al. (2013) Neutrophil mobilization via plerixafor-mediated CXCR4 inhibition arises from lung demargination and blockade of neutrophil homing to the bone marrow.

Sign the petition to make sure that Ariana-Leilani gets the life saving medicine to fight her severe chronic neutropenia:

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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

Treating Kids’ Cancer With Science And A Pocket Full Of Hope

Dr. Olson draws inspiration and strength from his patients and their families. His decision to work with kids, he says, goes back to something that happened 25 years ago when he was still in training. A 7-year-old girl he was caring for died, and the loss tore at his heart. But his reaction was complicated.

“The night that she died I was walking home, and I was almost skipping or dancing,” Olson says. “I was really light, and I was singing and humming out loud. Neither of these things is typical for me. And it was so absurd to me that this really profound event had happened that day, and I was feeling so opposite.”

So he sat down on a bench and tried to figure out what was going on. It didn’t take him long to realize his mood had to be related to a conversation with the girl’s parents. He’d assumed that after their daughter’s death, they’d want to get as far away from the hospital as possible. But, no.

“They actually tracked me down, and came up and gave me a beautiful warm hug,” Olson remembers. “And they said, ‘Her death to us was as beautiful as her birth, and the reason for that was because of the words you shared with us as we went through this. And we just want you to know that you have a gift, that when medicine doesn’t go the way you want it to, that you can still help families recognize a life doesn’t have to be 90 years [long] to be beautiful.’

“And so I sat there and thought about that for a long time, and I realized that this was a gift that I had,” he says. “And not many people would recognize the gift, or have it or want to share it. But for me it felt like a calling of sorts.”

Olson tore up the applications he’d written for other medical specialties and committed himself to pediatrics. Yet, he also wanted to do research. So he wound up going to the Fred Hutchinson Cancer Research Center in Seattle, where he could practice medicine and be a scientist, too.

In the past 20 years, or so, Olson has cared for hundreds of children with brain cancer. Though many have survived, many haven’t.

Read More: NPR Story

Sign the petition to help save Ariana-Leilani.

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What would you do if 10 year old Ariana-Leilani were your child?

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Make sure she gets the help she needs before it is too late.

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2014 Neutropenia Conference Announced by National Neutropenia Network

The 2014 Neutropenia Family Conference is set for July 11-13 at the beautiful Marriott Eagle Crest in the Ann Arbor Michigan area. Registration will officially open in January 2014. 

Program descriptions and agendas will be posted early next year. It is important to note that the conference will include the most popular features and sessions from past conferences including:

  • One-on-one meetings with the experts
  • Breakout sessions according to disease categories
  • Pain management
  • Dosing basics
  • Primer on Neutropenia
  • Oral Hygiene
  • Facilitating Networking
  • Patients Only Support Session
  • Kids Camp

In addition to the above programs some new ones will be added.

For More Information: 2014 Neutropenia Conference

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Related articles

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.

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