Hilary I think Rita raises valid points. Authorization is just authority to
spend money, not a requirement to spend money. Many authorizations are not
fully funded. Appropriations are closer to requirements depending on how
specific and directive they are. With the current Congress and the recent
Congresses, directive language toward NIH ('earmarking') is just not done.
This is much less the case for Federal Health Agencies outside of NIH, but NIH
is better funded and is the location of most of the scientific research.
(I have been working with CDC to develop a Parkinson's Agenda for
epidemiological studies of PD similar in method to the Environmental Studies
proposed by NIEHS. but that is another subject).
However, AIDS and most other well funded conditions have less of a concern
about the direct versus indirect $ granted because, other than PD, the $ are
mainly direct for other major diseases. A friend of mine who was until
recently Director of Legislation for Dr. Varmus at NIH, told me a year ago,
the NIH has developed indirect numbers in response to pressure from the
Parkinsons Community. From other friends who are in executive positions (e.g.
Deputy Director of an Institue) I have concluded that the numbers for budget
allocations are not derived in a very systematic way, and a value of the PAN
analysis is that it draws attention to the shortcomings of NIH reporting.
Some pressure from Congress is helpful to keep NIH on their toes. The BIG
problem now is that the PAN analysis is directed to last year's war, and is of
little relevance to current issues except that it gets Congress and well
meaning advocates excited and angers NIH officials who want to work with us.
Today, several PD advocates met with Dr. Fischback of NINDS, the lead agency
for PD, to discuss his Parkinson's agenda and this meeting was even more
exciting than the previous meeting about three months ago (reported on the
list). Much more than his predecessor, to me he genuinely believes that PD
can be reversed and he is on record saying this many times publicly. Plans
are underway on many fronts, not fast enough for me, but moving. He is open
to input from PD advocates and organizations, and will invite us to
participate in the Inter-institute PD Coordinating group. Research planning
conferences are being set up. The slowness in progress appears to due
primarily to lack of program staff to plan the initiatives, but a number of
new staff are being recruited. So echoing Mary Yost, lets use the Carrot and
the Stick (in the speak softly but carry a big stick tradition) and all the
tools we have to keep their feet to the fire, but be aware of the subtleties
before you criticize the current efforts which are considerable.
Hilary Blue <[log in to unmask]> wrote:
> It seems to me that we are all losing track of one basic fact. THere is a
law, that was passed in 1997, called the Udall Law. This Law states that
$100 000 000 is to be spent on research into Parkinson's Disease. ANd it
seems to me, that if that money is spent on anything else, then that Law is
being broken.
> HilaryBlue.
>
>
>
>
> [log in to unmask] wrote:
> >
> > Before I can justify in my own mind the "campaign for Udall designated
$$'s"
> > I still need an explanation to a question that I have asked before that
has
> > never been answered in any way shape or form........
> >
> > We quote $'s spent for other diseases in our lobbying
efforts.........those
> > $'s have never been broken down into $for disease (AIDS for example) and
$for
> > related basic research. This was done for Parkinsons research (by a team
of
> > PD researchers)....
> > We do not know the cause of Parkinsons. How can basic research be ruled
out
> > as "non-productive".
>
> > Rita Weeks.
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