Only 4 doses of Spinraza
Donation protected
Hi! I am Tímea Tóth from Hungary, 42 years old, living with SMA type two.
Do you think you have enough information about SMA, its possible treatments and cures? Really? Do you believe that? Then I'll complicate the picture with another possible path.
The path is rough but passable. A 32-year-old Swiss girl in worse condition than me, who was also rejected by her own health insurance, had already been through it.
There is a drug, Risdiplam from Roche that is less well-known and still under development. It is tested up to the age of 60, in many places throughout Europe. (Https://clinicaltrials.gov/ct2/show/NCT03032172)
There is only one condition that I currently do not meet: 4 doses of Spinraza must be had to be considered. Only 4 doses! Not 6, not 3 per year thereafter, until the end of my life, only a total of 4. After that I don't have to pay for participating in the experiment and so far the new drug seems to be more effective than Spinraza.
This Swiss girl managed to raise money and she was able to buy the medicine. She also had surgery on her spine, but the same doctor who operated my spine administered the drug.
The cost of one dose, including administration, hospital, anesthesia, altogether cost CHF 97,000. In other words, the 4 doses cost about 120 million HUF (~ £328,000)
It's a tremendously expensive route, I know, but may not be impossible to fund Will you be my travel companion?
Do you think you have enough information about SMA, its possible treatments and cures? Really? Do you believe that? Then I'll complicate the picture with another possible path.
The path is rough but passable. A 32-year-old Swiss girl in worse condition than me, who was also rejected by her own health insurance, had already been through it.
There is a drug, Risdiplam from Roche that is less well-known and still under development. It is tested up to the age of 60, in many places throughout Europe. (Https://clinicaltrials.gov/ct2/show/NCT03032172)
There is only one condition that I currently do not meet: 4 doses of Spinraza must be had to be considered. Only 4 doses! Not 6, not 3 per year thereafter, until the end of my life, only a total of 4. After that I don't have to pay for participating in the experiment and so far the new drug seems to be more effective than Spinraza.
This Swiss girl managed to raise money and she was able to buy the medicine. She also had surgery on her spine, but the same doctor who operated my spine administered the drug.
The cost of one dose, including administration, hospital, anesthesia, altogether cost CHF 97,000. In other words, the 4 doses cost about 120 million HUF (~ £328,000)
It's a tremendously expensive route, I know, but may not be impossible to fund Will you be my travel companion?
Organizer
Aniko Solti
Organizer
