Thursday, May 01, 2008
HCC Exhibit and Update
The past several months my graduate studies and my internship have kept me going at a hectic pace and I've been unable spend any time on the blog. This afternoon has a rare moment when I can do a little catching up and share what has happened at HCC in recent months.
The first news is that Milka has had surgery on one of her ears and I believe Dr. Jeremiah Kiponda was going to take her back to Nairobi to finish the other ear. I'm hoping to hear an update about her situation soon. Rose, the child with sickle cell anemia and a hernia, was scheduled for surgery on April 8, but at the last minute her surgery was canceled because of a hemolytic crisis due to her sickle cell condition. She has been on a special nutritional diet for months and Dr. Jeremy seemed confident that she was strong enough for surgery until the blood tests reveled that she was not strong enough yet. She will be re-evaluated in a month or two for her readiness for surgery. Her situation is complicated by the fact that she is in Malindi which has rather antiquated medical facilities by modern standards and funding prevents her from going to a more sophisticated hospital.
Meanwhile Jim has been sending his monthly food funds to HCC and also sent funds from his church which helped the children get new beds and clothes via Bishop Mambo's wife's women's organization. Jim and I are both studying in intense programs and we haven't communicated as much as we used to. The communication to me from Bishop Mambo, Sophie and others has been a bit spotty. I told everyone that I was not going to be able to spend much time on fundraising between January and June, and I'm sure that some of their silence is due to this. But also there have been power struggles between the HCC board and Director Zablon, and I do not think they have wanted to share how challenging that is. The past few months have been difficult ones for Kenyans because of the political uncertainties, and people are feeling the pinch of food and fuel prices, although their margin for such price hikes is non-existent. Power struggles are part of the outgrowth of scarcity.
Mostly I worry that the kids are feeling a bit neglected. Since I won't be able to afford to go to Kenya this year (unless a miracle happens!) I won't be able to give them the sort of personal attention that feels like it gives us all a lift. I also won't be able to do art with the kids and I know that has given them a lot of joy and pride. But the past three years' trips have been from my own pocket and I can't afford to go again because of grad school expenses. (If an angel wants to send me, let me know. I do have time this summer!) It grieves me but I hope that Jim will be going back to Kenya in July and will give a report of what he sees and experiences.
On the home front there are some activities that are showcasing HCC. At the beginning of April I gave a presentation at Pacific University for the students who were doing an AIDS in Africa awareness campaign. The students were very gracious and generous and bought some of the orphans' cards. They also made cards for the orphans which I plan to send on to Kenya soon. I will be sending their money, along with funds other funds I have collected this past month to HCC after the upcoming Stephen Lewis Event. These funds will go towards the continuing medical care of the orphans.
My church is hosting Stephen Lewis (www.stephenlewisfoundation.org) who has been an outspoken and inspirational leader in world awareness of AIDS issues in Africa , first through his work with the U.N. and then later through his foundation and many speeches. It has been a long term goal of the Portland Unitarian Universalists Global AIDS Coalition to have Stephen Lewis speak to us and in no small measure his work inspired my first trip to Kenya in 2005.
As part of the Stephen Lewis event I will have an exhibit of the HCC orphans' art and smiles up at my church fellowship hall. May 7th is World AIDS Orphans' Day and this exhibit and Stephen Lewis' visit is part of our honoring of the various programs at First Unitarian Church which are helping AIDS orphans and their families in Africa.
The first news is that Milka has had surgery on one of her ears and I believe Dr. Jeremiah Kiponda was going to take her back to Nairobi to finish the other ear. I'm hoping to hear an update about her situation soon. Rose, the child with sickle cell anemia and a hernia, was scheduled for surgery on April 8, but at the last minute her surgery was canceled because of a hemolytic crisis due to her sickle cell condition. She has been on a special nutritional diet for months and Dr. Jeremy seemed confident that she was strong enough for surgery until the blood tests reveled that she was not strong enough yet. She will be re-evaluated in a month or two for her readiness for surgery. Her situation is complicated by the fact that she is in Malindi which has rather antiquated medical facilities by modern standards and funding prevents her from going to a more sophisticated hospital.
Meanwhile Jim has been sending his monthly food funds to HCC and also sent funds from his church which helped the children get new beds and clothes via Bishop Mambo's wife's women's organization. Jim and I are both studying in intense programs and we haven't communicated as much as we used to. The communication to me from Bishop Mambo, Sophie and others has been a bit spotty. I told everyone that I was not going to be able to spend much time on fundraising between January and June, and I'm sure that some of their silence is due to this. But also there have been power struggles between the HCC board and Director Zablon, and I do not think they have wanted to share how challenging that is. The past few months have been difficult ones for Kenyans because of the political uncertainties, and people are feeling the pinch of food and fuel prices, although their margin for such price hikes is non-existent. Power struggles are part of the outgrowth of scarcity.
Mostly I worry that the kids are feeling a bit neglected. Since I won't be able to afford to go to Kenya this year (unless a miracle happens!) I won't be able to give them the sort of personal attention that feels like it gives us all a lift. I also won't be able to do art with the kids and I know that has given them a lot of joy and pride. But the past three years' trips have been from my own pocket and I can't afford to go again because of grad school expenses. (If an angel wants to send me, let me know. I do have time this summer!) It grieves me but I hope that Jim will be going back to Kenya in July and will give a report of what he sees and experiences.
On the home front there are some activities that are showcasing HCC. At the beginning of April I gave a presentation at Pacific University for the students who were doing an AIDS in Africa awareness campaign. The students were very gracious and generous and bought some of the orphans' cards. They also made cards for the orphans which I plan to send on to Kenya soon. I will be sending their money, along with funds other funds I have collected this past month to HCC after the upcoming Stephen Lewis Event. These funds will go towards the continuing medical care of the orphans.
My church is hosting Stephen Lewis (www.stephenlewisfoundation.org) who has been an outspoken and inspirational leader in world awareness of AIDS issues in Africa , first through his work with the U.N. and then later through his foundation and many speeches. It has been a long term goal of the Portland Unitarian Universalists Global AIDS Coalition to have Stephen Lewis speak to us and in no small measure his work inspired my first trip to Kenya in 2005.
As part of the Stephen Lewis event I will have an exhibit of the HCC orphans' art and smiles up at my church fellowship hall. May 7th is World AIDS Orphans' Day and this exhibit and Stephen Lewis' visit is part of our honoring of the various programs at First Unitarian Church which are helping AIDS orphans and their families in Africa.
# posted by Kirsten's Updates about the H.C.C. in Kenya @ 4:42 PM 
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NICOSAN, FDA Orphan Drug for the Treatment of Sickle Cell Disease developed in Nigeria
I would like to make you aware that there is a
non-toxic viable treatment for sickle cell in the
world and awaiting application for approval in the
U.S. and E.U. In clinical trials 80% of patients had no
crises and in the refractory 20% crises were reduced
by half.
Through awareness there may come availability for
those who so desperately need it. All it is going to
take is the effort of a few individuals, patients and
doctors to make this drug a reality in the U.S. sooner
than later. Although this drug was developed in
Nigeria, the man behind it, Dr. Ramesh Pandey is a
distinguished biochemist who has worked for the
National Cancer Institute's (NCI) Frederick Cancer
Research Center as a Senior Scientist, Head of the
Chemistry Section, Abbott Pharmaceuticals and
produced the first commercially viable generic version
of Vancomycin for Lyphomed Inc., a Visiting Professor
at the Waksman Institute of Microbiology at Rutgers,
the State University of New Jersey, holds patents for
biotechnology analysis and rare drug production
processes. He also holds several US and international
patents for paclitaxel and its new analogs. He is a
member of the Editorial Board of the International
Journal of Antibiotics and of several professional
societies. He has been awarded several grants from
NASA, NCI and NIH. The drug NICOSAN has been granted
Orphan Drug Status by both the FDA and E.U..
This new treatment for sickle cell is being produced in Nigeria
by an American pharmaceutical company, trade name NICOSAN®,
and it's proprietary name is NIPRISAN® . It was developed on the
premise of traditional Nigerian plant based medicinal practices
for the treatment of sickle cell disease.
It has been tested through phase IIb clinical trials and
found to be highly efficacious. Phase III trials have yet
to be completed however it was approved for sale in Nigeria
based on phase IIb trials and toxicity studies which showed
it to be safe and non-toxic.
Double-blind, placebo-controlled, randomised cross-over
clinical trial of NIPRISAN® in patients with Sickle Cell
Disorder
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7GVW-4DS346T-1S&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=211981d545303693affebb8c012d2cac
Efficacy of Niprisan in the prophylactic management of
patients with sickle cell disease
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VS8-43DFJCH-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=10528ecbab3ec7e977301fb9f2688ef6
NIPRISAN -- Nix-0699 Toxicity Studies
http://www.biospace.com/news_story.aspx?StoryID=15890720&full=1
Niprisan (Nix-0699) improves the survival rates of
transgenic sickle cell mice under acute severe hypoxic
conditions
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2141.2003.04536.x?journalCode=bjh
THE DEVELOPMENT OF NICOSANTM/HEMOXINTM
A DRUG FOR THE MANAGEMENT OF SICKLE CELL DISEASE.
HISTORICAL BACKGROUND
http://shestco.net/5_tech_park/nicosan.pdf
NIPRISAN Case, Nigeria
A Report for GenBenefit (2007)
http://www.theparliament.com/NR/rdonlyres/F46A1A12-0A1A-41DA-9F5D-A11486CA9BFA/0/Nigerian_Case.pdf
This drug is a major advancement in the treatment of sickle
cell disease unfortunately it is not available in the U.S..
Although the compound has been granted orphan drug status
by the FDA and the regulatory body of the European Union,
to date investigational drug applications for the approval
process have yet to be submitted. Getting a drug approved
in either area is extremely expensive. Until there is
funding available to proceed with the FDA and EU
applications it will be difficult for non-Nigerians to
obtain the drug.
We already know the benefits of the treatments available in
the U.S. and the E.U.. In many cases they are only
marginally effective or in the case of hydroxyurea cause
side effects so serious that many choose not to use it as
treatment. Here we have an opportunity to use a treatment
that has been shown to be highly effective, eradicating
crises in the majority of patients and reducing crises by
50% in the most refractory cases.
Nicosan by Western standards is an extremely inexpensive
drug. It is available in Nigeria without prescription at
$23/month for adults and child doses at $18/month.
Here is a link to the company and product website.
http://xechemnigeria.com/products.htm
I sincerely hope that you find this information helpful. I
would encourage you to forward and post this information
to any person, blog or website where persons effected by
sickle cell anemia can have access to this information.
Feel free to write me with any questions you may have.
Kristina Bruce RN
NicosanForSickleCell@yahoo.com
Post a Comment
I would like to make you aware that there is a
non-toxic viable treatment for sickle cell in the
world and awaiting application for approval in the
U.S. and E.U. In clinical trials 80% of patients had no
crises and in the refractory 20% crises were reduced
by half.
Through awareness there may come availability for
those who so desperately need it. All it is going to
take is the effort of a few individuals, patients and
doctors to make this drug a reality in the U.S. sooner
than later. Although this drug was developed in
Nigeria, the man behind it, Dr. Ramesh Pandey is a
distinguished biochemist who has worked for the
National Cancer Institute's (NCI) Frederick Cancer
Research Center as a Senior Scientist, Head of the
Chemistry Section, Abbott Pharmaceuticals and
produced the first commercially viable generic version
of Vancomycin for Lyphomed Inc., a Visiting Professor
at the Waksman Institute of Microbiology at Rutgers,
the State University of New Jersey, holds patents for
biotechnology analysis and rare drug production
processes. He also holds several US and international
patents for paclitaxel and its new analogs. He is a
member of the Editorial Board of the International
Journal of Antibiotics and of several professional
societies. He has been awarded several grants from
NASA, NCI and NIH. The drug NICOSAN has been granted
Orphan Drug Status by both the FDA and E.U..
This new treatment for sickle cell is being produced in Nigeria
by an American pharmaceutical company, trade name NICOSAN®,
and it's proprietary name is NIPRISAN® . It was developed on the
premise of traditional Nigerian plant based medicinal practices
for the treatment of sickle cell disease.
It has been tested through phase IIb clinical trials and
found to be highly efficacious. Phase III trials have yet
to be completed however it was approved for sale in Nigeria
based on phase IIb trials and toxicity studies which showed
it to be safe and non-toxic.
Double-blind, placebo-controlled, randomised cross-over
clinical trial of NIPRISAN® in patients with Sickle Cell
Disorder
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7GVW-4DS346T-1S&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=211981d545303693affebb8c012d2cac
Efficacy of Niprisan in the prophylactic management of
patients with sickle cell disease
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VS8-43DFJCH-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=10528ecbab3ec7e977301fb9f2688ef6
NIPRISAN -- Nix-0699 Toxicity Studies
http://www.biospace.com/news_story.aspx?StoryID=15890720&full=1
Niprisan (Nix-0699) improves the survival rates of
transgenic sickle cell mice under acute severe hypoxic
conditions
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2141.2003.04536.x?journalCode=bjh
THE DEVELOPMENT OF NICOSANTM/HEMOXINTM
A DRUG FOR THE MANAGEMENT OF SICKLE CELL DISEASE.
HISTORICAL BACKGROUND
http://shestco.net/5_tech_park/nicosan.pdf
NIPRISAN Case, Nigeria
A Report for GenBenefit (2007)
http://www.theparliament.com/NR/rdonlyres/F46A1A12-0A1A-41DA-9F5D-A11486CA9BFA/0/Nigerian_Case.pdf
This drug is a major advancement in the treatment of sickle
cell disease unfortunately it is not available in the U.S..
Although the compound has been granted orphan drug status
by the FDA and the regulatory body of the European Union,
to date investigational drug applications for the approval
process have yet to be submitted. Getting a drug approved
in either area is extremely expensive. Until there is
funding available to proceed with the FDA and EU
applications it will be difficult for non-Nigerians to
obtain the drug.
We already know the benefits of the treatments available in
the U.S. and the E.U.. In many cases they are only
marginally effective or in the case of hydroxyurea cause
side effects so serious that many choose not to use it as
treatment. Here we have an opportunity to use a treatment
that has been shown to be highly effective, eradicating
crises in the majority of patients and reducing crises by
50% in the most refractory cases.
Nicosan by Western standards is an extremely inexpensive
drug. It is available in Nigeria without prescription at
$23/month for adults and child doses at $18/month.
Here is a link to the company and product website.
http://xechemnigeria.com/products.htm
I sincerely hope that you find this information helpful. I
would encourage you to forward and post this information
to any person, blog or website where persons effected by
sickle cell anemia can have access to this information.
Feel free to write me with any questions you may have.
Kristina Bruce RN
NicosanForSickleCell@yahoo.com
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