MEMORANDUM
 
DATE:     August 16, 1995
TO:   Parkinson's Community Member
FROM:     Sheila Heath
RE:   Cost Evaluation Form
 
Enclosed is the copy of the Cost Form you requested.  Please complete it and
return it to:
 
          Parkinson's Action Network
          822 College Avenue
          Suite C
          Santa Rosa, CA 95404
          (707)544-2363 FAX
 
Thank you for taking the time to help us collect this very important
information.  I have enclosed two
documents which reflect the data we have generated so far.  We may use the
information you provide,
but your name will be kept confidential.
 
Please fill it out as completely as possible (if you have questions about how
to fill it out, please call
(800)850-4726).  If you do not know what your medication or medical care
costs are, please indicate
what type of medication or care you receive, and how often -- we will
determine the cost.
 
Feel free to give copies to your support group or friends with Parkinson's.
 The more information we
collect the better.
 
Note: If you think some element of costs has not been included, please
contact the Network.
 
COST EVALUATION FORM
 
 
Name of Parkinson's-afflicted
person:____________________________________________________
                                               (confidential)
Address:_________________________________
        Phone:_____________________________
           (confidential)                      (confidential)
   __________________________________
 
   __________________________________
 
Age:_____________            Age of onset of Parkinson's
symptoms:_____________
 
 
                           SECTION I
 
MEDICAL CARE COSTS  [Totals per year, unless otherwise noted.]
 
1.     Cost of medication per year:
                                     Paid by you and not reimbursed:
             $______________________per year
 
                                     Paid or reimbursed by other source (for
 
  example, Blue Cross, Kaiser, or Medicare):   $______________________per
year*
 
 
 
 
 
 
[If you don't know the amount, say so.]
 
       Paid by whom:
________________________________________________________________
 
  Note:  If medication was provided by your health care provider, etc., and
you don't know the cost, note here
  what medication was provided:___________________________________________
 
 
 ____________________________________________________________________________
 
  2.(a)     Cost of Parkinson's medical care:
  Neurologists visits, other Parkinson's-related
  medical procedures, treatments or other care
  paid by you and not reimbursed:
                  $______________________per year
 
  Neurologists visits, other Parkinson's-related
  procedures, treatments or other care paid or
  reimbursed by a third party (for example,
  Blue Cross, Kaiser or Medicare):             $______________________per
year*
 
  Paid by
whom:_______________________________________________________________
 
        Note:  If medical care was provided by your health care provider and
you don't know
  the cost, note here what medical care per year was given (for example, four
neurologists visits
per year etc.):____________________________________________________
 
 
 
______________________________________________________________________________
 
 
 
 
______________________________________________________________________________
 
  * If you don't know the amount, indicate D/K.
 
2.(b)       Cost of medical care for Parkinson's-caused problems:
  Doctor visits, other medical procedures, treatments or other
  care needed as a result of Parkinson's-caused problems
  (for example, injuries from a fall) paid for by you
  and not reimbursed:                     $______________________per year
 
  Neurologists visits, other procedures, treatments or other care
  needed as a result of Parkinson's-caused problems, paid
  for or reimbursed by a third party (for example,
  Blue Cross, Kaiser or Medicare):             $______________________per
year*
 
  Paid by
whom:_________________________________________________________________
 
     Note:  If medical care was provided by your health care provider and you
don't know the cost, note here what
  medical care per year was given (for example, four neurologists visits per
year
 
 
etc.):________________________________________________________________________
__
 
 
 
 
 
 
______________________________________________________________________________
 
 
 
 
 
 
 
______________________________________________________________________________
 
 
     * If you don't know the amount, indicate D/K.
 
3.   Cost of related care:
     Treatments necessitated by Parkinson's symptoms
     (physical therapy, etc.) paid by you and not
     reimbursed:
                                      $______________________per year
 
     Treatments necessitated by Parkinson's symptoms
     (physical therapy, etc.) paid by a third party (for
     example, Blue Cross, Kaiser or Medicare):
        $______________________per year*
 
     Paid by
whom:_________________________________________________________________
 
     Note:  If related care was provided and you don't know the cost, note
here what related care per year was given (for
  example, three physical therapy sessions,
etc.):_____________________________
 
 
 
 
 
 
______________________________________________________________________________
.
 
4.   Other related costs (e.g., cost of travel and lodging for special
procedures, second opinions,          etc.):
 
     Paid by you and not reimbursed:
                  $______________________per year
 
     Related costs paid by a third party
     (Blue Cross, Kaiser or Medicare):            $______________________per
year*
 
     Paid by whom:
_________________________________________________________________
 
     Note:  If related costs were provided and you don't know the cost, note
here what related costs per year were
  incurred (for example, airfare, lodging,
etc.):_________________________________
 
 
 
 
 
 
_____________________________________________________________________________
 
 
     Notes (elaborate here on any of the
above):__________________________________________
 
 
 
 
 
 
_____________________________________________________________________________
 
 
 
 
 
 
_____________________________________________________________________________
 
     * If you don't know the amount, indicate D/K.
 
     SECTION II
 
COST OF CARE FOR PARKINSON'S-AFFLICTED PERSON:
 
[If  payment was made to another person for assisted living, a nursing home
or other care for a person who is disabled by
Parkinson's, please fill in this section.]
 
1.    Assisted Living (e.g., in-home assistance with daily living, such as
dressing, eating, bathing, etc.).  (Here specify the
  care given):_____________________________________________________
 
 
 
 
 
 
_____________________________________________________________________________
 
     Amount paid by you/your family and not reimbursed:
 
     $_______________________per year
 
     Amount paid or reimbursed by a third party, like a government agency,
charity, etc.:
 
     $_______________________per year*,  paid by:
____________________________________
 
     Note:  If care was provided but you don't know the cost, describe the
care given:
 
 
 
 
 
 ____________________________________________________________________________
 
 
 
 
 
 ____________________________________________________________________________
 
2.   Nursing home or equivalent care:
 
     Amount paid by you/your family for a nursing home or equivalent, and not
reimbursed:
 
     $_______________________per year
 
     Amount paid by a third party like a government agency, disability
insurance plan, charity, etc.):
 
     $________________________per year*,  paid
by:___________________________________
 
     Note:  If care was provided but you don't know the cost, describe the
care given:
 
 
 
 
  ___________________________________________________________________________
 
 
 
 
  ___________________________________________________________________________
 
 
     Notes (elaborate here on any of the above)
 ________________________________________
 
 
 
 
  ___________________________________________________________________________
 
     * If you don't know the amount, indicate D/K.
 
   SECTION II
 
LOST WAGES/LOST PRODUCTIVITY
 
1.   Wages/productivity lost by Parkinson's-afflicted person:  If younger
than 65, were work hours or responsibilities cut,
  early retirement taken or other actions taken which reduced, changed or cut
short employment due to Parkinson's
  disability?  ________ Yes     _______ No
 
     If yes, what is or was the hourly compensation rate or equivalent for
the work previously performed?
  $________________
 
     How many hours per month are no longer worked that were worked before
disability          began?
___________
 
     If wages were reduced, by how much?
$___________________________________________
 
 
2.   Disability insurance, Social Security/SSI or other compensation:  If
younger than 65 and you are being compensated
  for retiring early or cutting back employment due to Parkinson's
disability, indicate amount of compensation:
  $___________ per _________ (month, year, etc.).
 
     Paid by whom (for example, disability insurance plan, SSI, previous
employer.):
 
 
 
 
  ___________________________________________________________________________
 
3.   Wages/productivity lost by caregiver of Parkinson's-afflicted person:
 If younger than 65 were
     work hours cut, early retirement taken or other actions taken reducing
employment income due to necessity of caring
  for a Parkinson's disabled person?  _______ Yes  ______ No
 
     If yes, note hourly compensation rate, or equivalent, for the work
previously performed:
$____________
 
     How many hours per month are no longer worked that were worked before
disability               began?___________
 
     If wages were reduced, by how much?
    $______________________________________
 
     Notes (elaborate here on any of the above)
 _________________________________________
 
 
 
 
 
 ____________________________________________________________________________
 
 
 
 
 
 ____________________________________________________________________________
 
 
 
 
 
 ____________________________________________________________________________
 
 
MAJOR RETURN ON INVESTMENT IN RESEARCH IN
PARKINSON'S DISEASE AND RELATED NEUROSCIENCE
 
Parkinson's disease:
        l A chronic, progressive neurodegenerative disorder killing brain cells
that produce dopamine (a neurochemical controlling motor function).
        l When 80% of the dopamine-generating cells have died, slowness of
movement, stiffness and tremor appear.  The drug L-dopa eliminates some
symptoms for a limited period but does not slow cell degeneration process.
        l  Approximately one million Americans currently afflicted.  Average age of
symptom onset is 57; 30% diagnosed under age 50.
        l Approximately three million more have at-risk, pre-symptomatic dopamine
cell loss.
 
Current cost burden:
        l  According to Dr. Ole Isacson of Harvard, Parkinson's is estimated to
cost America a minimum of $25   billion per year.
        l  The costs are spread among afflicted families, health and disability
benefit providers, SSI, SSDI,   Medicare and Medicaid.
        l  L-dopa and related drugs run $1000-$6000/year per patient.
        l  Ongoing care required includes neurologist visits, various physical
therapies and often treatment for depression.  Typical early-stage annual
medical cost per patient: $2000-7,000; advanced cases higher.
        l  Treatment and hospitalization for Parkinson's-caused falls can run
$40,000 or more.  (According to Dr. William Koller of the University of
Kansas, an estimated 38% fall, 13% more than once a week.)
        l  According to Dr. Roger Kurlan of the University of Rochester, 31% of
those employed will lose employment within a year.  Disability income
subsidies can run $30,000 or more.
        l As the disease progresses, substantial disability (inability to maintain
balance, walk, speak, move) requires assisted living and nursing home care.
 That can exceed $100,000 per patient.
 
Current scientific potential:
        l Several preventive and restorative strategies such as neural growth
factors, gene therapy techniques and surgical therapies show promise in
animal studies or human clinical trials.
        l  Important links to the cause (including genetic susceptibility and role
of toxic agents) are becoming established.
        l  Leading scientists describe Parkinson's as a major neurological disorder
expected to produce a breakthrough therapy and/or cure within this decade.
 
Stagnant current NIH investment in Parkinson's research:
        l  $26 million per year; no increase since 1989.
        l  10%-14% of NIH-approved projects are funded at 1995 funding levels.
 
Return expected from investment in Parkinson's research:
        l  According to Dr. Isacson of Harvard, an additional $20-40 million per
year spent to fund 100 of the most effective preclinical and basic research
programs (@ $200,000-$400,000 each) will produce new treatments within 2-3
years, an effective therapy or cure within 5 years.
        l  According to Dr. Kurlan of the University of Rochester, even a 10%
slowing of progression will save $327 million per year.
 
Following are individual examples of the million Americans bearing the
financial burden of     Parkinson's disease.  These examples illustrate that the
current estimates of the cost of Parkinson's -- presently estimated as
approximately $6 billion per year -- is a very conservative figure.  That
amount probably only includes basic medical care costs.  It does not include
the huge additional costs of related medical costs resulting from falls and
other Parkinson's consequences; non-medical care such as physical therapy;
disability benefits from private insurance and government programs such as
SSDI or SSI; lost tax revenue due to early retirement or reduced employment;
assisted living, respite care and nursing homes; and the lost tax revenue
from lost employment opportunities of care-giving family members.
 
FEMALE I        Years with Parkinson's  9                               Age at onset:   36
        Current age:    45
Status: Working full-time but disabled from previous employment as trial
attorney.                                                               Medication costs/year   $2,788.00                               Medical
care/year       $650.00                           (plus travel to specialists)                                  Related care
(physical therapy, etc.)        $ 2,340.00                              Lost taxes on earnings lost per
year    $20,000.00
        TOTAL PER YEAR  $25,778.00
                *       *       *
 
MALE I          Years with Parkinson's:         6                               Age at onset:      40                           Current
age        46
Status:         Permanently disabled from full-time employment as CPA.
        Medication costs/year:  $  4,697.00
        Medical care/year:      $  1,950.00                             Private disability insurance
paid/year:      $72,000.00
        TOTAL PER YEAR  $78,647.00
 
MALE II Years with Parkinson's:  9                              Age at onset:    28                             Current age:
37
Status: Permanently disabled from employment as city
employee.                                                                                               Medication costs/year:   $3,000.00
        Medical care above insurance/year:      $20.00  *
        Related care (physical therapy, etc.):  $1,440.00
        Disability insurance/SSI payments:      $10,536.00                              Taxes previously paid on
$31,500                                   salary less taxes now paid on                                           SSI/disability benefits:
   $18,086.00
        TOTAL PER YEAR: $33,082.00
* Care covered by Kaiser with $3,600/year premium.
        *       *       *
 
MALE III        Years with Parkinson's:    18                           Age at onset:           37                              Current
age:            55
 
Status: Permanently disabled from employment from job earning $83,400/year.
        Medication costs:         $3,924.00
        Medical care:                $200.00
        Related Care (physical therapy, etc.)     $3,200.00
        Disability payments by Aetna                                      Insurance and SSDI:      $51,756.00
 
        TOTAL PER YEAR:    $59,080.00
 
        *       *       *
 
MALE IV Years with  Parkinson's           18                            Age at onset:           53                              Current
age:            71
Status: Totally disabled; unable to care for self; needing round-the-clock
care.                                                                           Medication costs:         $2,500.00                             Medical care:
  $10,200.00                            Related care (hospitalization and care following
          a fall caused by Parkinson's symptoms):        $40,000.00                             Assisted living
(in-home hired care to assist                                     family; 50% paid by family, 50% paid by
Medicaid):      $104,000.00
        TOTAL PER YEAR: $156,700.00