• Welcome, Guest. Please login or register.
    May 30, 2020, 02:24:43 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andythalpal@yahoo.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55292 Posts in 5909 Topics by 6204 Members
Latest Member: pareshdas1985

A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
« previous next »
Pages: 1 2 » Go Down Print
Author Topic: Can we support this? PLZ HELP it might be on Oprah next year  (Read 13672 times)
maryo0m
Junior Member
***
Offline Offline

Location: kuwait

Gender: Female
Posts: 151


---SPREAD UR WINGS AND FLY---


« on: August 14, 2009, 11:02:09 AM »

this is a medicine done to work towards a cure for thalassemia, diebetes and sickell cell anemia
but the company was bankruped and they have no money to support the medicine for this medicine to be on the market we have to send letter to the people who are incharge and support it ... by sending letters they will allow the medicine to be on market:


You guys plz support us by sending a letter starting with this: to get an agreement and confirmation to put a medicine for thalassemia treatment on the market send it to this email :

lamontef@yahoo.com

or on my facebook inbox PLLLLLLLLLLLZ PLLLLZ PLLZ this is for ur benefit u guys thnx

In your case I'd be looking for a letter that says something like, "I'm a Thalassemia Major patient, I've head about Nicosan and I want to support you in your efforts in getting Xechem back..."
Logged

------------Spread your wings and fly-----------
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #1 on: August 14, 2009, 01:31:43 PM »

Mariam,

Can you tell a bit more about the med? i mean what is it and what does it do? is their any link online?

Zaini.
Logged

^*^Xaini^*^
baal
Junior Member
***
Offline Offline

Gender: Male
Posts: 139


to be or not to be


« Reply #2 on: August 14, 2009, 01:58:22 PM »

hi zaini

its nothing offichial....
its a herbal-mix and some
sickle-cells seemed to take it...
here is a link:http://sicklecellblog.blogspot.com/
for my personally meanig its only for money...
but...who noes?
Logged
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #3 on: August 14, 2009, 11:57:12 PM »

Thanks Panos

Zaini.
Logged

^*^Xaini^*^
maryo0m
Junior Member
***
Offline Offline

Location: kuwait

Gender: Female
Posts: 151


---SPREAD UR WINGS AND FLY---


« Reply #4 on: August 15, 2009, 12:31:05 AM »

hello zaini and baal
yup got some info here and its true the guy who contated me on facebook told me that they use it for dietbities sickel cell and thalassemia

hmmmm i know this might not work or it might but why not put some hope right? i mean all it takes is sending this email adress a letter here is what i got as feedback about the med:

THE DEVELOPMENT OF NICOSAN TM/HEMOXIN TM
A DRUG FOR THE MANAGEMENT OF SICKLE CELL DISEASE.
7.0 HISTORICAL BACKGROUND
NICOSANTM/HEMOXINTM (formerly NIPRISAN) is a drug first developed by the
National Institute for Pharmaceutical Research and Development (NIPRD) for
the management of Sickle Cell Disease (SCD). It consists of a mixture of
extracts from four tropical plants some of which are cultivated and others
found in the wild both within and outside Nigeria.
The story of NICOSANTM/HEMOXINTM will be incomplete without acknowledging
some of the great minds, which have contributed immensely towards its
development. Historically, a similar remedy was mentioned in the book titled
“Iwosan” published by the late Dr. Odumosu at the turn of the century.
However, the modern day origin of what later became patented as NIPRISAN
was due to the late Rev. Paul Ogunyale, then Pastor of the First Baptist Church
in Ibadan, Oyo State, Nigeria, who brought the attention of Prof. Charles
Wambebe, former Director General, NIPRD in late 1992 to a herbal recipe of
the drug.
From 1992 to 2001, Prof. Wambebe and his team of researchers at NIPRD,
supported by the Federal Government of Nigeria (FGN) and the World Health
Organization (WHO), worked tirelessly to develop NIPRISAN as a potent drug
for the management of SCD and was patented in the United States of America
under the leadership of Prof. Wambebe. After the retirement of Prof. Wambebe
from NIPRID, his successor, Dr. Uford S. Inyang continued tirelessly with more
developmental work in taking NIPRISAN to a higher level.
7.1 THE BIRTH OF NICOSANTM/HEMOXINTM
In August 2001, a joint conference on biotechnology was organized at Cook
College, New Brunswick, NJ between the Sheda Science and Technology
Complex (SHESTCO), Abuja and Rutgers University under the leadership of Dr.
Soji Adelaja, who was then Dean of Research at Cook College and New Jersey
Agricultural Experiment Station (Cook/NJAES), and Dr. Albert Ayeni, then Weed
Scientist at Cook/NJAES and currently Coordinator of International Programs of
Cook/NJAES.
Dr. Ramesh C. Pandey, Chairman & CEO, Xechem International, Inc.,
represented his company at this conference. What transpired during and after
the conference propelled Dr. Pandey to explore the possibilities in the
applications of biotechnology for drug production in Nigeria. At the instance
of Prof. Turner T. Isoun, the Honourable Minister of Science and Technology,
Dr. Pandey visited Nigeria for the first time in October 2001 with Dr. Albert
Ayeni. This visit aroused in Dr. Pandey the interest in exploiting biotechnology
for drug development in Nigeria. The first product of interest, NIPRISAN was
thus, introduced to him by Dr. Ayodele Coker, the Director- General of
SHESTCO, and later by Dr. Uford S. Inyang, the Director- General of NIPRID.
1
In July 2002, negotiations were successfully concluded between NIPRD and
Xechem International under the direction of Prof. A. B. C. Nwosu, then the
Honourable Minister of Health. Xechem International was granted the exclusive
rights for development, production and marketing of NIPRISAN. To give effect
to the agreement, Xechem Pharmaceuticals Nigeria Ltd, which is located within
the premises of the Sheda Science and Technology Complex, was incorporated
in 2002.
7.2 ABOUT SICKLE CELL DISEASE:
Sickle cell Disease is a genetic blood disorder caused by an abnormality in the
hemoglobin molecule as depicted in the figure below. The condition causes the
production of abnormal hemoglobin that contains portions that stick together
after the release of oxygen. This phenomenon produces stiff, sickle shaped red
blood cells that do not flow freely through blood vessels. These sickle shaped
cells create clogs in the blood vessels, which prevent the flow of normal
hemoglobin and oxygen round the body. The result is severe pain or “crises”,
ulcers, organ and tissue damage and breakdown, which eventually lead to
stroke and acute chest pain. The body’s immune system also attacks and seeks
to destroy the abnormally shaped cells, often leaving the body with an
insufficient number of normal oxygen- carrying red blood cells, which in turn
results in anemic condition that manifest in fatigue and enhanced susceptibility
to infection. It is estimated that there are 10 million sufferers of SCD
worldwide, of which about 4 million are Nigerians.
Sickle Cells Normal Cells
Repeated crisis can also result in damage to the kidneys, lungs, bones, eyes
and the central nervous system. The most feared complication for children
with SCD is a stroke which affects infants as young as 18 months. Many
children with SCD do not survive infancy or early childhood. Adults with SCD
often experience a reduction in the quality of life due to severe physical
problems such as pain, Hard- foot syndrome and acute lung complications that
can result in death. Frequent episode of severe bone pain, crises and
hospitalization significantly affect the lives of these patients. It limits their
ability to participate in normal physical activities, thus retarding their social
2
and economic advancement. It also deprives them of the joy of living life to the
fullest and instills the fear of early death in them.
Before the advent for NICOSANTM/HEMOXINTM the only known cure for the
disease is a bone marrow transplant to replace defective red blood cells with
donor healthy cells. Treatment has generally consisted of supporting therapies,
which include folic acid for anemia, penicillin to prevent infections,
pneumococcal and influenza vaccination, pain killing drugs and intravenous
injection of fluids. In the United States of America, Hydroxyurea is the only
drug approved by the Food and Drug Administration (FDA) for the treatment of
SCD. It is very expensive and toxic and patients treated with hydroxyurea
exhibit severe side effects.
7.3 HOPE FOR THE SICKLERS.
NICOSANTM/HEMOXINTM is a non- toxic, phytopharmaceutical product
composed of extracts from four tropical plants, seeds, stems, fruits and
leaves. Each plant is indispensable in the manufacturing of
NICOSANTM/HEMOXINTM. Xechem Pharmaceuticals Nigeria Limited has
developed refined and standardized small- scale formulations of
NICOSANTM/HEMOXINTM for consistent production in strict compliance with the
recommended procedures and policies of the WHO.
NICOSANTM/HEMOXINTM has already undergone phase I and phase II clinical
trials conducted in Nigeria by the NIPRD. Results from the phase III trials, if
found satisfactory, will form the final basis for an application to the National
Agency for Food and Drug Administration and Control (NAFDAC) for regulatory
approval. Further laboratory testing among others have also been done at the
National Heart, Lung and Blood Institute - Sickle Cell Disease Reference
Laboratory (NHLBI-SCDR Lab) located at the Children’s Hospital, Philadelphia,
Pennsylvania, USA. The results of these trials show that
NICOSANTM/HEMOXINTM drastically reduced the degree of sickle cell formation,
and the frequency and severity of SCD crises. Liver and kidney functions
remained normal and patients gained appreciable weight. No adverse effects
were reported during the trials. These clinical studies suggest that NICOSANTM
is a safe and efficacious phytomedicine for the management of SCD. It may
have just paved the way for ending the misery and pain of millions of SCD
sufferers in Nigeria and the world at large.
Through the instrumentality of Dr. Pandey, and based on the background of
work done at the Children’s Hospital, Philadelphia (CHOP) and other published
literature in various indexed journals, on August 15th, 2003, NICOSAN™
(NIPRISAN) was granted an Orphan Drug status by the Food and Drug
Administration of the United States of America (US-FDA). The Orphan Drug
designation, entitles a company to various incentives including the waiver of
Regulatory filing fees, access to potential funding for non- clinical and clinical
research to generate required data for marketing approval, and seven years of
marketing exclusivity once approved by the FDA.
3
This was a major break- through since it was a far- fetched possibility that the
US-FDA would designate NICOSANTM (NIPRISAN) Orphan Drug status. The
Orphan Drug status has thus, added credibility and international acceptability
to NICOSANTM (NIPRISAN) as a potent drug for the management of SCD.
4
Logged

------------Spread your wings and fly-----------
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #5 on: August 15, 2009, 09:14:51 AM »

Thanks Mariam 

Zaini.
Logged

^*^Xaini^*^
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8656


Will thal rule you or will you rule thal?


« Reply #6 on: August 15, 2009, 04:13:40 PM »

I don't know what the purpose of this campaign is, but it seems completely futile. The government of Nigeria has withdrawn the license for Niprisan after Xechem International went into bankruptcy. This may actually be the best thing in the long run. The Nigerian government has the stated intention of taking over production of this drug so that sickle cell sufferers can once again have access to a drug that has been shown to be very effective in reducing the amount of sickling events experienced by patients. The drug is for real and was granted orphan drug status in 2005, but financial difficulties have led to its unavailability to patients.

http://scidev.net/en/health/drug-development/news/nigeria-takes-over-sickle-cell-drug.html

Quote
The Nigerian government will manufacture an indigenous remedy for sickle cell anaemia following the collapse of attempts to produce it commercially by the Nigerian subsidiary of a US-based pharmaceutical company.

Niprisan — marketed as Nicosan by Xechem International, the company that till recently held the licence to produce it — is taken by thousands of Nigerian sickle cell sufferers to alleviate their symptoms. Production slowed down in the last year and sources say it has now ceased completely.

But the government's National Institute for Pharmaceutical Research and Development (NIPRD), which originally developed the treatment, told SciDev.Net last week (19 March) that it is taking over production of Niprisan.

"We wish to confirm that the exclusive licence given to Xechem International for the manufacture and marketing of Nicosan has been withdrawn and the agreement in this regard terminated," said Niyi Ojuolape, special assistant (communication) to the Nigerian Minister of Health.

"In the mean time, NIPRD will be producing the drug to make up for any possible shortfall that might arise before a new licensee is appointed," Niyi told SciDev.Net in an email.

Niprisan is a natural extract of plants native to Nigeria, which have long been known for their benefit to sickle cell patients. It has been shown to improve survival rates under severe hypoxic conditions, but I can find no mention of its use in thalassemia. I do think this bears further investigation in regards to its use for all states of anemia to see if it has value outside of sickle cell.
Logged

Andy

All we are saying is give thals a chance.
maryo0m
Junior Member
***
Offline Offline

Location: kuwait

Gender: Female
Posts: 151


---SPREAD UR WINGS AND FLY---


« Reply #7 on: August 15, 2009, 10:41:04 PM »

Welcome zaini, Andy thank you for posting this and for your great efforts as always I know thats what im confused about (what about thalassemia ? )

but the guy in charge was so kind to have answered my question today and he said that they did have tests on thals and dozens of them were sucessfull but they never posted anything about thal because thals werent common.
Logged

------------Spread your wings and fly-----------
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #8 on: August 16, 2009, 05:45:51 AM »

It will be great if we can read any of these studies or how the drug work with thals

manal
Logged
maryo0m
Junior Member
***
Offline Offline

Location: kuwait

Gender: Female
Posts: 151


---SPREAD UR WINGS AND FLY---


« Reply #9 on: August 16, 2009, 05:15:16 PM »

Hi manal

yes I am with you thats why im asking for them...

turns out its not a cure its a treatment



Logged

------------Spread your wings and fly-----------
lamontef
New Member
*
Offline Offline

Posts: 6


« Reply #10 on: August 16, 2009, 05:57:22 PM »

Hi everyone,

I'm the guy that Mariam has been talking to about Nicosan, she's asked me to give you a bit more information and answer any questions if I can. I'm not a doctor, I haven't done research, but I've spoken to the guys that have worked on Nicosan and they've told me that that they've worked with Thalassemia patients.

As Andy mentioned, Nicosan has had a rocky history, but that's primarily because it ended up in the wrong hands. I've been working for the last 18 months with the founder of Xechem, Dr. Ramesh Pandey, to regain control of Xechem and to move Nicosan forward. We are very close, that's why Mariam has requested your help, it was as my request.

The situation right now is that the license to manufacture and market Nicosan has reverted to NIPRD (National Institute for Pharmaceutical Research and Development) in Nigeria. NIPRD revoked the license from Xechem because they failed to meet market demand, failed to provide quarterly reports, failed to maintain proper quality control and failed to pay quarterly royalty payments. On top losing the license to Nicosan, Xechem Nigeria has been taken into receivership by NEXIM and two other banks in Nigeria. Right now, I'm in a situation where I'm supplying a proposal for our group, headed by Dr. Pandey, to take over Xechem Nigeria from the banks. It's our mission to bring credibility to traditional medicines as prescription drugs globally, starting with Nicosan.

As has been mentioned, Nicosan enjoys Orphan Drug Status in both the US and European Union. In 2007, work was about to begin on the Nicosan clinical trials in the United States at five hospitals, but an investment group brought in by Dr. Pandey removed him from management and then stopped the clinical trials, stopped the construction of the new facility in Abuja and over the next year drove the company into bankruptcy.

Anyway, the point to all this is that I'm submitting a proposal to the bank (Federal Government Investment Bank - NEXIM) this week and I'm looking for support from anyone affected by Sickle Cell or Thalassemia. At this time we've been told it has helped Thals, but we need to do more testing to see the level of help it can provide. To be honest with you all, from what I understand, the reason it wasn't tested more was that there isn't that much Thalassemia in Nigeria and that's were there is drug regulatory approval for sale. Moving forward, we hope to do tests and if we find out that it's beneficial, we'll work to get approval to sell the product elsewhere.

What we are looking for is individuals that are hopeful of helping us bring this promising treatment back into production, tested and available for sale. If you are, please contact me at lamontef@yahoo.com.

If you have any questions, please don't hesitate to contact me, I'm happy to answer anything I can and I'll work on getting answers to questions that I can't.

Thanks much,

LaMonte Forthun
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8656


Will thal rule you or will you rule thal?


« Reply #11 on: August 18, 2009, 09:47:18 PM »

I have had some email communication with Dr Ramesh C. Pandey and I feel his work is something we can all support. He does hope at some point, to run clinical trials of Nicosan in thalassemia patients and he is also active working using herbal drugs as prescription drugs in other areas of interest to thalassemics, including malaria and type-2 diabetes. His work fits so well with the philosophy of our site and I wish him the best in his continued endeavors. I have also requested that he remember us and keep us updated on his work.

Logged

Andy

All we are saying is give thals a chance.
lamontef
New Member
*
Offline Offline

Posts: 6


« Reply #12 on: August 18, 2009, 09:57:08 PM »

Hi Andy,

Dr. Pandey mentioned that you had been writing him, I'm glad that he's answered your questions. The work that he's been doing and will continue to do is very exciting.

As I mentioned, where we are at right now is working with a few Government groups in Nigeria (NEXIM Bank and NIPRD) to work on acquiring the rights to the facility and Nicosan. It's our intention, as Dr. Pandey said, to investigate and work on finding out the effectiveness of Nicosan on Thalassemia as quickly as we can and then to move to get approvals to market the product we were can.

What we are asking is if anyone is willing to write a letter of support for us to contact me at lamontef@yahoo.com. We can use all the support we can get to show them that we are working hard to move forward. The banks are looking to see what we'd do when we get in the door, I want to show them how much we've done outside the door so they can only imagine what we'd do when we are actually inside...

I look forward to hearing from you all and working closely with you. We can all pray that this is beneficial you.

Thanks much!

LaMonte
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8656


Will thal rule you or will you rule thal?


« Reply #13 on: August 18, 2009, 10:01:19 PM »

Everyone, please do write these letters and show the support you have for this type of research. I do feel there may be some potential for this drug in thalassemia because of its action on the membranes of red blood cells, and should therefore, be thoroughly investigated. Please contact Lamonte with your letters. I feel nothing is more powerful than the words of those directly affected, so please give your support.
Logged

Andy

All we are saying is give thals a chance.
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #14 on: August 19, 2009, 04:38:24 PM »

Definetly we will write and thanks to everyone trying to offer new treatments

manal
Logged
Pages: 1 2 » Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!