From: "Mike Barkley" mjbarkl@comcast.net
To: "Terence Keane" terence.keane@can.nmss.org

Subject: Re: Federal investment in MS research
Date: Sun, 23 Nov 2003 05:21:30 -0800

Hello, you responded,
 
----- Original Message ----- 
> From: "Terence Keane" terence.keane@can.nmss.org
> To: "'Mike Barkley'" mjbarkl@comcast.net
> Sent: Thursday, November 20, 2003 12:30 PM
> Subject: RE: Federal investment in MS research
>
> Dear Mr. Barkley:
>
> I'm afraid I do not know all of the figures you're seeking. I have attached
> information on a 1998 study that calculated the annual economic costs of MS
> exceeding $9 billion. As you will see from the attached document
> adjusting these figures for inflation, the cost now exceeds $20 billion.
> 
> You may also wish to review the following document on healthcare costs:  
> 
>  http://www.nationalmssociety.org/Research-2002Jan11.asp
> 
. . .
> << Whetten-Goldstein, K et al, 1998.pdf >> 
 
Thank you for the information and the attachments.  The Research-2002Jan11.asp
page is just a summary, right?  Is the study itself online somewhere?
 
The $20 billion seems to be ultimately based on the Whetten study, right?
I skimmed through that attachment and while I find "wages", I don't find 
"benefits" or any suggestion that they were or were not included in "wages".
Could you enquire?  I also suspect that Whetten didn't include a "lost 
outside income opportunity" amount, although I didn't either - for instance,
although my wife can barely hold the telephone up to her ear and is losing
the ability to sign her name and never made much money working for others
because MS has damaged her since early high school, she is a self-made 
real estate multimillionaire though MS fatigue has since shoved nearly all 
of that "outside income" effort off onto me.  
 
I was surprised at how close my $19 billion came to the
Society's number - I have some skills in this, CPA/Attorney/Investor/etc.,
but of course my numbers were based on my own knowledge and 
anecdotal information rather than rigorous scientific examination....
 
I had suggested an annual cost to the Federal Government:
 
Based on (I know you're using 400,000, but I'm guessing that 100,000 of those are not
materially hampered by their MS - am I mistaken?),
 
  $9,000,000,000 - Annual loss of productivity @ $30,000 (income/benefits), 300,000 people
   4,500,000,000 - Annual loss of productivity 150,000 additional family members
   6,000,000,000 - Annual medical costs at $20,000 
      50,000,000 - Unpaid debts/bankruptcy losses, $50,000 for 1000 people 
      50,000,000 - Premature life/disability payments, $50,000 for 1000 people
 ---------------
 $19,600,000,000 - Total annual impact on U.S. Economy
 ===============

U.S. Government share - could be less (could be more):
 
  $1,200,000,000 - income tax/payroll tax lost on victims at $5,000
     600,000,000 - income tax/payroll tax lost on 1 family member
      10,000,000 - income tax lost on bad debts
      10,000,000 - income tax lost on premature insurance payments
       5,000,000 - Federal unemployment, 1,000 people at $5,000/year
   1,200,000,000 - Federal SSI/SSDI/Retirement on 100,000 people at $1,000/month
     500,000,000 - Federal medical costs on 100,000 people at $5,000/year
 
      95,300,000 - Annual U.S. Government spending on a cure ( For Fiscal
                     Year 2003, the federally funded National Institutes
                     of Health will spend $95.3 million on multiple sclerosis
                     research.) 
  --------------
  $3,620,300,000 - Total annual cost to U.S. Government
  ==============
 
With the Feds spending on a cure about 2.6 % of their annual cost, what kind of idiots
spend 97.4 % on a problem and 2.6 % on a solution for the problem?  
 
I seems to me that it's crucial to effective lobbying for NIH funds that the 
Feds know how much they're wasting on this disease (assuming they wouldn't 
use the numbers to cut benefits rather than find a cure, of course.  Sheesh!).
Is there anyone in the NMSS group taking this approach in the lobbying?  Other
disease organizations should be doing that as well, collectively, "in union 
there is strength" and all that....
 
Thank you for your consideration, and all the best,
 
   --Mike Barkley, 161 N. Sheridan Ave. #1, Manteca, CA 95336 (H) 209/823-4817
                                mjbarkl@inreach.com
      $87,000,000,000 to cure Iraq - a pittance to cure Multiple Sclerosis.