This web site is voluntarily sponsored by MND/ALS patients ("PALS" - Persons with ALS) who take RCH4 and is intended to be a source of independent information for PALS. We have no connection with the charity who supplies it to us.
The information presented is from our own experience and by the charity who supplies us. They are an informal charitable organization of retired doctors and scientists with lifetimes experience in membrane osmosis and immunity research. One of the scientists has discovered and identified the protein promoting ALS, the problem protein which was previously unknown by the researchers around the world. The RCH4 charity have designed a drug that can safely stop the production of this problem protein. The RCH4 organization never sought publicity or recognition due to their lack of funds necessary for the treatment of more PALS than they do.
RCH4 is said to suppress the problem protein, and is provided worldwide according to Regulatory Authority and medical rules and regulations on prescription drugs in a particular country. This drug can give hope to the patients with ALS and is free of charge.
Over some years of use around the world, RCH4 appears to be effective and safe, however, one more clinical trial is required to get Regulatory Authority approval. Approval makes the drug eligible for health insurance cover and/or National Health Service availability. But the charity which supplies it lacks the funding for the trial. However, Internet forums, like “Patients Like Me”, discuss the efficacy and safety of the drug. Monitoring reports by PALS from fourteen countries using RCH4 are submitted to the charity every month and have been over the course of several years.
This charity who provides us with RCH4 has never made claims about the efficacy of the drug. However, they possess considerable data collected from PALS over several years.
There are no inclusion/exclusion criteria for PALS who desire to take this new drug, unless contraindications are present. If they have enough resources, the charity provides it on a humanitarian basis, which distinguishes their efforts from clinical trials.
Their PALS are taken on a first come first served basis of those who ask for help. This also avoids skewing of the statistical analysis in favor of the efficacy of the drug, unlike clinical trials where patients are carefully selected for best outcome. The charity has no placebo control group, and all of PALS receive the actual RCH4 drug.
How do they work out just how effective the drug is? Firstly they establish the speed of the disease decline for each person from the time of their diagnosis to the time each person starts on RCH4.
Then they know the speed of decline after starting treatment with RCH4 from the monthly monitoring reports submitted by that person.
By comparing the decline rate before to the decline rate after, the efficacy of the drug is established. The charity maintains a database which provides detailed analysis of every PALS, in real time, ongoing.
Since the beginning, the charity has collected the data from PALS, who all combined, were given around 6,000 doses of RCH4. Based on the evidence submitted through their monthly monitoring reports, the drug shows strong potential to slow the progression of ALS, which also means the potential of prolonging the lives of PALS.
For some PALS, the drug halts the decline of their ALSFRS-R score over time. Fewer PALS note the improvement, or reversal, of their ALSFRS-R score over time, but these results usually take much longer.
The cases of score reversal (improvement of the condition) may raise a question about the accuracy of their diagnosis. In case of the error in diagnosis, they can observe the efficacy of the drug applied to other neurodegenerative conditions. The patients themselves admit that as long as the treatment improves their function or slows down their decline, the name of their disease is irrelevant to them.
Since many PALS have not had their ALSFRS-R score assessed by a neurology specialist, it is difficult to establish the average starting score. In case the information from a neurologist is not available, the data relies on the information provided by patients, as follows:
· In 16% cases, the decline of subjects remains the same after the beginning of treatments.
· In 69% cases, the decline slows down over the course of 18 months compared to the speed of decline before starting the new drug.
· 15% cases observed their symptoms stop to decline for over 12 months.
When asked about side effects, patients report small bruising or stinging when the liquid is cold. However, even these side effects do not last more than three months, and side effects lasting more than a year would be seen as extremely unusual.
Need to know:
Even though the new drug is distributed worldwide free of charge, it is in fact a very expensive and scarce treatment. The drug’s production and distribution is a humanitarian effort, and there is no external organization sponsoring it, thus the number of patients that can be treated with RCH4 is limited.
Currently, the drug is experimental and it does not have approval from any country’s Regulatory Authority. Moreover, it cannot be considered a proven treatment due to the lack of blinded, placebo controlled clinical trials.
The existing drugs and technology are extremely unlikely to provide cure for ALS. In very rare cases patients see the improvement in neurodegenerative conditions. Even though the data collected from PALS sounds promising, the accuracy or efficacy of the treatment cannot be guaranteed.
RCH4 may not provide the patient with positive results, because different people experience different reactions to medications. It is an individual’s decision whether to undergo the treatment. ALS is a variable condition, and responses from PALS also highly vary.
Even though over the decades of treating patients RCH4 did not evoke noticeable side effects, the patients should be aware of the possibility of side effects occurring, as with any other drug. Patients are takeing RCH4 at their own risk.