Sickle Cell Warriors

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  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

March: 23 Days of Sickle Cell News

Hello family. Here is your regular roundup of sickle cell news. Angola joins the sickle cell fight, India gets active, $3 million SC case settled in the UK, Nicosan back in the news, drama in Bahrain (again), and 2 new sickle cell treatments enter the ring. Get your SC news here.

Great news for the sickle cell community in Angola! A new public-private partnership of the Republic of Angola, the Baylor International Pediatrics AIDS Initiative (BIPAI) — a joint program of Baylor College of Medicine and Texas Children’s Hospital — and Chevron has been created to focus on early diagnosis, testing, education and treatment programs in Angola. There has not been a concerted effort on sickle cell programs in Angola to date, and this $4 million project will be the first targeted approach to the nation’s problem of sickle cell. The approach will target newborn screening at 2 largest maternity hospitals in Luanda, and will also share a platform with HIV/AIDS, tuberculosis and malaria. Hopefully sickle cell won’t get pushed into the background. Read more about the partnership HERE.

In India, the Gujarat local government has decided to set up a Sickle Cell Society that tackles the growing issue of sickle cell, through screening, treatment and education programs. As you remember from previous reports, due to ignorance, sickle cell is rampantly present in the Indian population, and many districts are taking notice. The disease has been prevalent in the tribal belt of the state that includes districts like the Dangs, Valsad, Tapi, Surat, Banaskantha, Sabarkantha, Godhra, Dahod and Narmada. It is believed that about 10-14% of the total population in this area has sickle cell disease. Read more.

In the UK, 2 teenage sisters made headlines after being awarded over 3 million pounds from Whipps Cross University Hospital NHS Trust due to negligence. The sisters Obafemi and Wuraola had both suffered multiple strokes after the hospital stopped giving them the frequent blood transfusions that they needed to be stroke-free. The case never went to court but was settled in mediation, and the sisters got 3 million to cover their future medical expenses and treatment related to the strokes. It is amazing that these two women took on the ‘system’, and didn’t back down until their voices were heard. They should be an example to us all.  Read more.

For those of us hoping and praying for Nicosan, there are rumblings of a solution on the horizon. The Managing Director of the Nigerian Export Import (NEXIM) Bank, Mr. Robert Orya, said that Nicosan should be back in production in the next three months. He stated that bank officials have been inundated with sickle cell patients, parents and supporters on a regular basis, crying for a solution to the gridlock that Nicosan is in. Thank you for all those who have kept up the pressure…it has made a difference. To Mr. Orya: I have heard many promises in the last 18 months regarding Nicosan, so I’m taking this up with God for a deep miracle. Let the countdown begin. I expect results by June 23, 2011, Mr. Orya. Read on.

Meanwhile, in Bahrain, the Sickle Cell Society has started assertively making efforts to get the Health Ministry Under-Secretary Dr Abdul Hai Al Awadhi out of his position. We’ve been following the news in Bahrain quite closely, and it seems like every week, there is some new struggle that the sickle cell warriors over there are fighting. First it was the high number of deaths in the Salmaniya Medical Center. Then it was the fact that the hospital started giving pain meds to SCD patients only every 8 hours. Then more patients started dying from complications related to sickle cell WHILE WAITING for treatment in the ED. The government promised to build a new center specifically for sickle cell, and it seems like this gesture stemmed the tides  a little bit. But so far the new center has not been built, all is not well in Bahrain, and the Sickle Cell Society is making sure that their patients’ voices are heard…even in the highest echelons of government. Keep going strong warriors!

In other news, it looks like another biopharmaceutical company has entered the ring. Bluebird Bio and the French Muscular Dystrophy Association (AFM) have entered a $4.2 million deal for research feasibility studies for their new drug, LentiGlobin. Based on clinical data published in the September 2010 issue of Nature, LentiGlobin therapy has shown the potential to eliminate the need for monthly blood transfusions in patients with beta-thalassemia, without the risk of graft-versus-host disease. LentiGlobin falls under gene therapy and will allow a fully functional human beta-globin gene to be introduced into the patient’s own hematopoietic stem cells. Go France! Sounds promising

EryTech Pharma has started a round of presentations for it’s new treatment GR-ARA1, which has been shown in mice to improve oxygen delivery to tissues and cells and is induced as being effective in reducing inflammation, pain and tissue damage for sickle cell patients. There isn’t much literature out there on this one, but once I know, you’ll be the first to know. Read more HERE.

Remember Dr. Banks in Maryland that was fired for blowing the whistle at her job on their improper practices of using patient blood samples for other research without patient consent?  During a drug trial in 2006, she discovered that an outside contractor had developed “immortal” cell lines from genetic material obtained from patients in a previous Banks sickle cell anemia trial conducted by Banks. She believed that doing so without the participants’ informed consent violated federal law and she told her bosses, who didn’t deal with the issue.

When her supervisors disagreed with her, she complained to the National Heart, Lung, and Blood Institute, which is in HHS’s line of command, and the Office of Special Counsel, which is not. When her bosses learned she’d complained to the Heart, Lung, and Blood Institute, they put her on paid leave, removed her from the project, and then found a reason to fire her: They alleged that she had removed expiration labels from drug containers.

She sued for race and gender discrimination as well as retaliation for whistleblowing. A federal district court judge ruled for HHS, believing that her complaint to the Institute was a part of her job responsibilities. Parts of her claims were dismissed, and the last charge: retaliation for whistle blowing has now been kicked back down from the Appeals court to the District court. Hopefully justice will be served, one way or another. Read more about the case HERE.

Finally, the Sickle Cell Disease Association of America (SCDAA) is hot on the fundraising tip, and the “One Million in 100 Days” campaign is still going strong. Text BREAK to 52000 to donate $10 to sickle cell programs in the US, and tell your friends about how they can help.

Catch you next time!

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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