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