Aftenposten article translation about 100 million Nkr donation for PSC

[Guest guest]

Stein Hagen donates 100 million Nkr to medical research.

Because of a private reason he wants to use all the money towards a

rare liver disease.

Illness:

Name: Primary sclerosing cholangitis

Obstructions in the bileducts

Can cause cirrhosis

Affects 10-15 in 100.000, mainly men between 30 and 40

Illness has some genetic conditions, in other words is heridatary.

Up untill now it is a fatal disease, only transplant can cure it

entirely.

Aftenposten learned that this plan has caused reactions amongst

other researchers. The issue being that a rich private citizen

person can direct public money from the limited research funds and

dictate where it is spent on.

Since the Norwegian research council is required to add 25% to all

private donations the research council is now required to pay 25

million to the same cause.

Limited means.

" With the limited means Norway has, there is the problem that a

private citizen can dictate use of public money and reserve that

money for a cause using non-objective priority criteria " says Beata

Indrebo Hovland, head of the national research ethics commitee for

medicin and health (NEM).

Another point is that it can also tie up researchers as well as

their limited resources.

" On the other side we know that peoples own experience with illness

and suffering can be an important motivating factor to donate. That

must also be taken into account. I see little problems with a

private person's desire to direct a donation, as long as the state

has the option to use it's own priorities and criteria " , underligns

the NEM leader.

The disease Hagen has pinpointed to donate towards, is called

Primary Sclerosing Cholangitis (PSC). It affects between 10-15

people per 100.000 citizens. Around 3000-4000 Norwegians live with

this diagnose.

" This is absolutely not a common disease. This is a rare disease "

says dean Finn Wisloff.

To be continued.... It is too late already to finish this today.

Sorry.

Chaim Boermeester, Israel

[Guest guest]

>

> Stein Hagen donates 100 million Nkr to medical research.

> Because of a private reason he wants to use all the money towards a

> rare liver disease.

>

> To be continued.... It is too late already to finish this today.

> Sorry.

>

> Chaim Boermeester, Israel

>

thanks Chaim for the translation, I look forward to reading 'part 2'

Thanks again.

[Guest guest]

I will try tonight.

From:

[mailto: ] On Behalf Of J

Sent: Tuesday, November 27, 2007

23:34

To:

Subject: Re:

Aftenposten article translation about 100 million Nkr donation for PSC

>

> Stein Hagen donates 100 million Nkr to medical research.

> Because of a private reason he wants to use all the money towards a

> rare liver disease.

>

> To be continued.... It is too late already to finish this today.

> Sorry.

>

> Chaim Boermeester, Israel

>

thanks Chaim for the translation, I look forward to reading 'part 2'

Thanks again.

[Guest guest]

Change the deal

Wisloff clarifies that the initial proposal of the donation

agreement meant to direct the money in its entirety (towards PSC).

In the first draft we would obtain all the moeny for PSC research,

clarifies Wisloff. The university then obtained a chaged agreement

in which the money would be " mainly " used for PSC research. Wisloff

emphasizes that he does not have a problem with the new agreement.

" I am not dissatisfied. We are gratefull for research donations and

hope that it will start a constructive cooperation between trade

and medical research. We have proposed that private investors would

direct their money instead of the department of medicine " says

Wisloff.

Complete confidence.

Research minister Tora Aasland appears to agrees with donation that

ios mainly going towards a rare disease.

" I have full confidence that the university appreciates the

initiative, and it knows the benefit of such initiatives. We are

happy with such gifts. It will create clearly extra push towards

basic research " continues Aasland.

She points out that there is a requirement for the so

called " donation increase law " -because of that law the research

commitee has to add 25 percent- that the money goes towards

longterm, fundamental research.

Stein Hagen requested not to tell why he chose exactly this

disease. But the Aftenposten senses that it has a personal reason.

PSC is a chronic and hereditary disease.

-These grave diseases which are relatively unknown - when you

consider the attention and resources for research - lie in the shade

of the massive common illnesses, says Hagen's spokesperson A.

Ruzicka.

He points out that Hagen has given earlier considerable funds

towards common diseases like cancer and hart-trouble.

If anyone wants to edit what I wrote to make it better english

he/she is more than welcome to do so. My english is far from perfect.

Chaim Boermeester, Israel.