There is a treatment that could lengthen my life expectancy and strongly decrease my symptoms. This treatment is accomplishable and wouldn’t be the last straw for me but i a real solution. What would you give for this?
My treatment is an intensive one and it will take a year, in which Penicilline G in combination with Hydrocortison is given. During the treatment I will be on a drip where I will be given a high dose of Penicilline G and Hydrocortison for 21 days every 3 months. After 3 weeks a 10 week rest period will be given so that after that the treatment can be continued. This is an existing treatment and it has been used around the world since the 80s for another illness, because of this the ALS patients would live about 5-13 years longer. In the Netherlands 10 patients have already started with this treatment and they show improvement in things such as: talking and swallowing. They also have more strength in their muscles and they have a greater lung capacity.
Ill for too have a ‘test-treatment’
In the Netherlands there is a clinical trial using this treatment. This is a test period which takes multiple years, it is used to test the medicine. But I have been ill for too long to be a part of this clinical trial.
“this treatment is available for other ALS patients if they have been through an entire clinical trial procedure and there have been significant improvements, only after this the treatment will be covered by the insurance companies’’
The SEVBI foundation is pleading for an off-label prescription of the treatment as the results are so good. Because the treatment isn’t scientifically acknowledged (yet) the insurance companies refuse to cover the treatment. You can, however, get the treatment if you have the money for it. The complete treatment costs about: 48000 euros. Because of all of this I have no other choice but to pay for the treatment myself. I won’t be able to do this without your help.