Bad News Regarding S-DFO (starch desferal)

I was recently contacted by Bo Hedlund, from Biomedical Frontiers about the inability to find funding to continue trials and development of S-DFO, the once per week chelation drug. I have long felt that this drug would be a major breakthrough for patients, as it would make chelation so much easier to manage.

This is the message.

Dear Andy -

It appears that the development program for S-DFO has reached its end.

We have contacted about 40 companies and none expressed interest.

A handful stated that we should contact them again once we had data
from a Phase II study.  Unfortunately we are about $5 million short to
achieve that goal...

I am interested in your thoughts.

Best regards,

Bo

Bo Hedlund, Ph.D.

At the conference in New York City in October, 2009, I was dismayed to hear only Dr Coates bring up the issue of a once per week chelator, and felt that Novartis has far too much influence, and largely due to what Bo mentioned in the note above. I am also somewhat dismayed that as more and more problems surface with Exjade, that the world of thalassemia is not charging full speed ahead to find alternatives. We need better drugs. S-DFO has the potential to be just that, but without funding, we will see it disappear.

I am asking for any ideas and suggestions. I am asking for anyone who has any potential influence anywhere in the world with drug companies or governments that may be able to help in this endeavor. Can money be found anywhere? Dubai, Bahrain, Kuwait, Singapore? Anywhere? This is far too important to ignore and let slip away. Think about what a difference a once weekly chelator would make to patients everywhere. Think about how this drug could have saved the life of the founder of this group. Please do all you can to help this company continue. This is urgent. If we do not do this today, we will most likely never see this important drug react the market.

Biomedical Frontiers, Inc.
1087 10th Avenue S.E.
Minneapolis, MN 55414
U.S.A.
Phone: 612-378-0228
Fax: 612-378-3601
info@biomedicalfrontiers.com

I am so frustrated of being helpless, $5 million is not big money for countries, investors, ....

I believe the key is in the media either by media pressure on the pharma companies or the media urging people and charity foundation to donate

All it takes is to convience some one in this field to lead such a campaign.

In my country, i have seen a lot of examples showing how this works. We have a program here which is so famous (same as Oprah at your side of the world) which was able to collect donation of $6million for a small village whose houses where runined from very heavy rain (don't know the exact term for this kind of rain that is he same as flood ) This donation was collected in one episode that was aired for 3 hours

Same amount of money was collected to help some families who had patients that were in need to do liver transplant

The most clear example here in my country was getting donations over 3 or 4 years that reached billions and billions were this money was used to build ''Hospital 57357 for Cancer for children'' that offers free treatment for children with so advanced technology that enabled them to work in co-operation with Memorial Sloan-Kettering Cancer Center and another famous one in France (can't recall the name).

The annual cost to operate this hospital  is around 150 million Egyptian pounds and they also come from donations. You can have a look at the hospital and see how big it is from the photo in the link below

http://www.middleeasthealthmag.com/mar2008/me2.jpg
Their site
http://www.57357.com/Default.aspx?tabid=138

It all started with a media campaign that was so influncial that famous celibrities, ploiticans, people who preaparing for elections,..... are so keen to give a free add about such hospital because by time media the media was able to influnce the people that who ever contributes is the ''good guy'' and these adds increases a lot in the time of elections

I can still give you a lot of examples to show you how ordinary people, families, housewives and even children can contribute to such big projects if they are informed of it and informed how this can help others and can change their lives

People need to be informed to creat the NEED to share and donate, once this is done it is easy to get the money

The problem lies in finding the anchor who believs in your cause, it may look simple but is is so difficult to know how to reach such media channels.

When we succeed to reach these strong media programs, ordianry people will be mobilized to act and help us and only at this time big pharmas will run after you

MEDIA is POWERFUL

This is what i believe, hope this helps and hope one day S-DFO and gene therapy would be available in my life time

manal

This is indeed a very disappointing news,and yes governments can fund these things,but they are blinded by greed and wars.

S-DFO would take one hour per week to administer, so there is a huge advantage over desferal.

its  indeed a bad news ..... wishing that company get ableto find the funds to carry on research for S-DFO ....


Umair

i just read this...
Manal could you try contacting the program like Oprah to donate the same way for us?
If they can collect 5million to complete the phase 2 of this trial, then what blessing this S-DFO  will be...
has anyone tried...
couldn't we ask Oprah? Why not???

Actually i did a couple of years ago, but there was no serious feedback, It seems that you should be in personal contact with media decison makers. Also the media here in my country is  more concerend with cancer patients