Editor’s note: US Thalidomide survivor, Burt Pusch, has done the math on costs associated with our thalidomide injuries, over our lifetimes. This is by no means an exhaustive list; but gives an overview of the increased hardships our members are facing; and illuminates the need for financial assistance. Thalidomide injuries were avoidable and can be traced back to unauthorized clinical trials in the United States, and the US attorney general’s decision not to prosecute the drug companies at the time. And we are the casualties.
Thalidomide costs
Healthcare
1. In 2025-2026 three Lengthened hospital stays due to inability to access a second vein
for blood draws – 2-3 days – $6,000 – $9,000
2. Surgeries
a. Complete reconstruction of right limb -$70,000
b. Amputation of left limb at the knee – $25,000
c. Carpal tunnel surgery (Right hand unique anatomy added to the complexity)
i. Preliminary imaging – $3,000
ii. Surgery – $6,500
d. Hip replacement – $65,000
e. Fracture reduction to alleviate knee pain – $15,000
i. Nursing home recovery – $7,000
3. Consultations
a. Shoulders – both permanently dislocated x 8
b. Hips – congenital anomalies x 4
c. Knee pain – x 4
d. Nerve pain – x 5
e. ENT – my ear canals are uniquely shaped: 3 consultations per year
Dental
1. Tongue – frenulum linguae: frenotomy – $800 (I paid)
2. Gum replacement at 30 and 60yrs old – $5,800 (combined)
3. “Shark” teeth (1 pulled, 1 not pulled) – $400
4. TMJ – Lt – $500 (I paid)
DME
1. Highly customized manual and power wheelchairs $20k (manual) — $70k (power) range
(Medicaid approved)
a. Six powerchairs so far in my lifetime
b. Three manual wheelchairs so far in my lifetime
2. Insurance refusal to purchase an indoor powerchair due to Medicaid/Medicare regs. that 4 physicians recommended I needed for wound management – $6,000 (Significantly
cheaper than Medicare/Medicaid approved powerchairs)
3. Artificial limb – $30,000 (age 3 to 60, aprox 20 artificial sockets/limbs)
4. Floor reaction brace – $2,000 (age 3 to 60, proximately 30 brace – these broke a lot)
5. At age 60, insurance refused to cover re-sizing of socket for artificial limb when I started losing weight as a result of walking again.- $4,500. The insurance decision pushed me into using a power wheelchair full-time. (much more expensive and more limiting than walking)
Attendant Care
1. Current: $76,800 yr (after the insurance reduce coverage by $23,000 last year)
2. I have required attendant care since age 18.
Environmental accommodations (control lights and open apartment door with verbal command)
(I paid)
1. Current Alexa and Google devices
a. 3 Alexa – $300
b. 1Google – $60
2. Past Alexa and Google devices – $300
3. Hue light bulbs – $180 (current) over the years closer to $400
4. SwitchBot – $30
5. Lifetime expenditures est. $2,000
Transportation
1. I’ve have driven three custom wheelchair accessible vans in the past 30 years which
average to approximately $100,000 each. (I paid for two of my vans)
2. Van maintenance and repair – $30,000 (I paid)
Household – I buy items that I can easily use with my fore-shortened arms and 3 fingers ( I paid)
1. Silverware
2. Dishes
3. Food storage containers
4. Food storage bags – Need the ziplock style
5. Lever activated trash bins
6. Rocker style light switches
7. Custom standing desk – accommodates when I use powerchair (high) or manual
chair (low) – $2,000
8. Remote control blinds – Bedroom and living room – $5,500
9. Over the bed table – $1,200
10. Refrigerator with refrigerator drawer option $3,500
11. Shower chair – $130
12. 4 reachers conveniently placed throughout the house – $20 each ($80)
13. Lifetime expenditures est. $10,000
Clothing- My arms are very short (This has been a lifetime expense. These are current costs.) (I
paid)
1. Altered shirt – $120
2. Altered winter jacket – $200
3. Altered suit jacket – $600
4. Custom shirt – $100
5. Custom suit jacket – $600 – $800
6. Lifetime expenditures est. $30,000
Service dog – I’ve had six service dogs (one at a time) so far (I paid)
1. Initial cost – $400 adoption fee
2. Annual food – $660
3. Annual vet bills – $1,500
4. Emergency vet bills – $5,000
5. Equipment – $200
6. Dog trainer services – $2,000 – $3,000
7. Lifetime expenditures est. $70,000
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