Suramin is not a proven cure
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ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,480
Location: Long Island, New York
23 Feb 2023, 10:42 am
Quote:
There is no proven cure for autism spectrum disorder (ASD), and an experimental drug being studied to address some symptoms of the condition has not been demonstrated in large-scale clinical trials to be effective, despite online claims that the unapproved therapy is a “cure” for ASD.
Suramin, a medication generally used to treat African sleeping sickness and river blindness, is not approved by the U.S. Food & Drug Administration (FDA) for any use, and the preliminary studies of its effect on certain autism symptoms have been too small to demonstrate whether it even works on those, experts told Reuters.
Some posts refer to the treatment having caused “non-verbal” children with autism to start speaking within hours, but without citing the source of that alleged result. The only published trial of suramin involved just 10 children with ASD, with only five receiving the drug, and did not report any such outcome.
The authors of that published study concluded the drug may have had promising, temporary effects on the five boys who received it, but the medication needed to be studied in larger trials to establish both safety and efficacy. That hasn’t happened yet, autism researchers say.
SMALL SURAMIN STUDY
A small, FDA-approved phase 1 clinical trial in 2017 tested suramin’s effect on certain “core” autism symptoms in five boys, as compared with five boys given a placebo. The study found small, temporary improvements in scores on a diagnostic assessment for autism known as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) examination (here). However, no significant changes were reported for any other tests used, and the authors pointed to the limitations of the experiment and its small size, writing that they “strongly caution against the unauthorized use of suramin” in the study’s conclusion.
Dr. Robert Naviaux, the study’s lead author and a professor of medicine, pediatrics and pathology at the University of California, San Diego, toldnReuters that the trial found suramin might help treat symptoms of ASD, including speech and language delay, difficulty with nonverbal social communication, and restricted or repetitive behaviors or interests.
The study was based on a theory that the energy-generating machinery in cells is over-active in autism, and that surimin’s action to block a molecule called ATP may help to offset the problem. More on the rationale can be read in a review article by Naviaux.
Despite the encouraging results suggesting the drug may affect autism symptoms, Naviaux said, “the study was just 10 children and just a single dose of medicine,” and “doctors cannot prescribe suramin for autism until it has been tested for safety and efficacy in rigorous clinical trials, and approved for this use by the FDA.”
Some users online say that suramin is found in pine needles, but Naviaux says those claims are also false, as it is a “complex manmade medicine and is not present in pine needles or any other natural product.”
A trial in 54 children in South Africa of intravenous suramin reported positive improvements in a 2022 press release, although the data have not been published.
Naviaux is listed as a member of the advisory board of the company that ran the trial (www.paxmedica.com/about).
LACKING DATA
Suramin has shown “some promise in treating some of the symptoms” of ASD in preliminary findings, Mark Cavitt, the medical director of pediatric psychiatry services at the Johns Hopkins All Children’s Hospital, told Reuters by email. But it “will need to proceed through FDA stage II and III trials with many hundreds of patients enrolled to be adequately tested for safety and efficacy.”
While there is no single cure for ASD, Cavitt said, “it’s important to continue research on novel approaches to treating symptoms of autism that are safe and effective,” because “with multiple FDA approved choices we can continue to successfully treat increasing numbers of those with autism.”
James McPartland, a professor of child psychiatry and psychology at the Yale Child Study Center, told Reuters that “at present, suramin would not be considered a research-supported treatment for autism at all,” and the 2017 study on suramin “has not been replicated in an adequately sized group of children.”
McPartland said it is important to “consult with a medical professional when evaluating potential treatment options” because there is “a long history of unrealistic claims for the potential benefit of untested treatments for autism, and some can be harmful.”
Reuters has reached out to the FDA for comment.
VERDICT
Misleading. Suramin is not a proven cure or treatment for autism spectrum disorder (ASD), but preliminary research suggests it might have promise to improve symptoms associated with ASD.
Suramin, a medication generally used to treat African sleeping sickness and river blindness, is not approved by the U.S. Food & Drug Administration (FDA) for any use, and the preliminary studies of its effect on certain autism symptoms have been too small to demonstrate whether it even works on those, experts told Reuters.
Some posts refer to the treatment having caused “non-verbal” children with autism to start speaking within hours, but without citing the source of that alleged result. The only published trial of suramin involved just 10 children with ASD, with only five receiving the drug, and did not report any such outcome.
The authors of that published study concluded the drug may have had promising, temporary effects on the five boys who received it, but the medication needed to be studied in larger trials to establish both safety and efficacy. That hasn’t happened yet, autism researchers say.
SMALL SURAMIN STUDY
A small, FDA-approved phase 1 clinical trial in 2017 tested suramin’s effect on certain “core” autism symptoms in five boys, as compared with five boys given a placebo. The study found small, temporary improvements in scores on a diagnostic assessment for autism known as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) examination (here). However, no significant changes were reported for any other tests used, and the authors pointed to the limitations of the experiment and its small size, writing that they “strongly caution against the unauthorized use of suramin” in the study’s conclusion.
Dr. Robert Naviaux, the study’s lead author and a professor of medicine, pediatrics and pathology at the University of California, San Diego, toldnReuters that the trial found suramin might help treat symptoms of ASD, including speech and language delay, difficulty with nonverbal social communication, and restricted or repetitive behaviors or interests.
The study was based on a theory that the energy-generating machinery in cells is over-active in autism, and that surimin’s action to block a molecule called ATP may help to offset the problem. More on the rationale can be read in a review article by Naviaux.
Despite the encouraging results suggesting the drug may affect autism symptoms, Naviaux said, “the study was just 10 children and just a single dose of medicine,” and “doctors cannot prescribe suramin for autism until it has been tested for safety and efficacy in rigorous clinical trials, and approved for this use by the FDA.”
Some users online say that suramin is found in pine needles, but Naviaux says those claims are also false, as it is a “complex manmade medicine and is not present in pine needles or any other natural product.”
A trial in 54 children in South Africa of intravenous suramin reported positive improvements in a 2022 press release, although the data have not been published.
Naviaux is listed as a member of the advisory board of the company that ran the trial (www.paxmedica.com/about).
LACKING DATA
Suramin has shown “some promise in treating some of the symptoms” of ASD in preliminary findings, Mark Cavitt, the medical director of pediatric psychiatry services at the Johns Hopkins All Children’s Hospital, told Reuters by email. But it “will need to proceed through FDA stage II and III trials with many hundreds of patients enrolled to be adequately tested for safety and efficacy.”
While there is no single cure for ASD, Cavitt said, “it’s important to continue research on novel approaches to treating symptoms of autism that are safe and effective,” because “with multiple FDA approved choices we can continue to successfully treat increasing numbers of those with autism.”
James McPartland, a professor of child psychiatry and psychology at the Yale Child Study Center, told Reuters that “at present, suramin would not be considered a research-supported treatment for autism at all,” and the 2017 study on suramin “has not been replicated in an adequately sized group of children.”
McPartland said it is important to “consult with a medical professional when evaluating potential treatment options” because there is “a long history of unrealistic claims for the potential benefit of untested treatments for autism, and some can be harmful.”
Reuters has reached out to the FDA for comment.
VERDICT
Misleading. Suramin is not a proven cure or treatment for autism spectrum disorder (ASD), but preliminary research suggests it might have promise to improve symptoms associated with ASD.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
23 Feb 2023, 4:04 pm
ASPartOfMe wrote:
Reuters
Quote:
There is no proven cure for autism spectrum disorder (ASD), and an experimental drug being studied to address some symptoms of the condition has not been demonstrated in large-scale clinical trials to be effective, despite online claims that the unapproved therapy is a “cure” for ASD.
Suramin, a medication generally used to treat African sleeping sickness and river blindness, is not approved by the U.S. Food & Drug Administration (FDA) for any use, and the preliminary studies of its effect on certain autism symptoms have been too small to demonstrate whether it even works on those, experts told Reuters.
Some posts refer to the treatment having caused “non-verbal” children with autism to start speaking within hours, but without citing the source of that alleged result. The only published trial of suramin involved just 10 children with ASD, with only five receiving the drug, and did not report any such outcome.
The authors of that published study concluded the drug may have had promising, temporary effects on the five boys who received it, but the medication needed to be studied in larger trials to establish both safety and efficacy. That hasn’t happened yet, autism researchers say.
SMALL SURAMIN STUDY
A small, FDA-approved phase 1 clinical trial in 2017 tested suramin’s effect on certain “core” autism symptoms in five boys, as compared with five boys given a placebo. The study found small, temporary improvements in scores on a diagnostic assessment for autism known as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) examination (here). However, no significant changes were reported for any other tests used, and the authors pointed to the limitations of the experiment and its small size, writing that they “strongly caution against the unauthorized use of suramin” in the study’s conclusion.
Dr. Robert Naviaux, the study’s lead author and a professor of medicine, pediatrics and pathology at the University of California, San Diego, toldnReuters that the trial found suramin might help treat symptoms of ASD, including speech and language delay, difficulty with nonverbal social communication, and restricted or repetitive behaviors or interests.
The study was based on a theory that the energy-generating machinery in cells is over-active in autism, and that surimin’s action to block a molecule called ATP may help to offset the problem. More on the rationale can be read in a review article by Naviaux.
Despite the encouraging results suggesting the drug may affect autism symptoms, Naviaux said, “the study was just 10 children and just a single dose of medicine,” and “doctors cannot prescribe suramin for autism until it has been tested for safety and efficacy in rigorous clinical trials, and approved for this use by the FDA.”
Some users online say that suramin is found in pine needles, but Naviaux says those claims are also false, as it is a “complex manmade medicine and is not present in pine needles or any other natural product.”
A trial in 54 children in South Africa of intravenous suramin reported positive improvements in a 2022 press release, although the data have not been published.
Naviaux is listed as a member of the advisory board of the company that ran the trial (http://www.paxmedica.com/about).
LACKING DATA
Suramin has shown “some promise in treating some of the symptoms” of ASD in preliminary findings, Mark Cavitt, the medical director of pediatric psychiatry services at the Johns Hopkins All Children’s Hospital, told Reuters by email. But it “will need to proceed through FDA stage II and III trials with many hundreds of patients enrolled to be adequately tested for safety and efficacy.”
While there is no single cure for ASD, Cavitt said, “it’s important to continue research on novel approaches to treating symptoms of autism that are safe and effective,” because “with multiple FDA approved choices we can continue to successfully treat increasing numbers of those with autism.”
James McPartland, a professor of child psychiatry and psychology at the Yale Child Study Center, told Reuters that “at present, suramin would not be considered a research-supported treatment for autism at all,” and the 2017 study on suramin “has not been replicated in an adequately sized group of children.”
McPartland said it is important to “consult with a medical professional when evaluating potential treatment options” because there is “a long history of unrealistic claims for the potential benefit of untested treatments for autism, and some can be harmful.”
Reuters has reached out to the FDA for comment.
VERDICT
Misleading. Suramin is not a proven cure or treatment for autism spectrum disorder (ASD), but preliminary research suggests it might have promise to improve symptoms associated with ASD.
Suramin, a medication generally used to treat African sleeping sickness and river blindness, is not approved by the U.S. Food & Drug Administration (FDA) for any use, and the preliminary studies of its effect on certain autism symptoms have been too small to demonstrate whether it even works on those, experts told Reuters.
Some posts refer to the treatment having caused “non-verbal” children with autism to start speaking within hours, but without citing the source of that alleged result. The only published trial of suramin involved just 10 children with ASD, with only five receiving the drug, and did not report any such outcome.
The authors of that published study concluded the drug may have had promising, temporary effects on the five boys who received it, but the medication needed to be studied in larger trials to establish both safety and efficacy. That hasn’t happened yet, autism researchers say.
SMALL SURAMIN STUDY
A small, FDA-approved phase 1 clinical trial in 2017 tested suramin’s effect on certain “core” autism symptoms in five boys, as compared with five boys given a placebo. The study found small, temporary improvements in scores on a diagnostic assessment for autism known as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) examination (here). However, no significant changes were reported for any other tests used, and the authors pointed to the limitations of the experiment and its small size, writing that they “strongly caution against the unauthorized use of suramin” in the study’s conclusion.
Dr. Robert Naviaux, the study’s lead author and a professor of medicine, pediatrics and pathology at the University of California, San Diego, toldnReuters that the trial found suramin might help treat symptoms of ASD, including speech and language delay, difficulty with nonverbal social communication, and restricted or repetitive behaviors or interests.
The study was based on a theory that the energy-generating machinery in cells is over-active in autism, and that surimin’s action to block a molecule called ATP may help to offset the problem. More on the rationale can be read in a review article by Naviaux.
Despite the encouraging results suggesting the drug may affect autism symptoms, Naviaux said, “the study was just 10 children and just a single dose of medicine,” and “doctors cannot prescribe suramin for autism until it has been tested for safety and efficacy in rigorous clinical trials, and approved for this use by the FDA.”
Some users online say that suramin is found in pine needles, but Naviaux says those claims are also false, as it is a “complex manmade medicine and is not present in pine needles or any other natural product.”
A trial in 54 children in South Africa of intravenous suramin reported positive improvements in a 2022 press release, although the data have not been published.
Naviaux is listed as a member of the advisory board of the company that ran the trial (http://www.paxmedica.com/about).
LACKING DATA
Suramin has shown “some promise in treating some of the symptoms” of ASD in preliminary findings, Mark Cavitt, the medical director of pediatric psychiatry services at the Johns Hopkins All Children’s Hospital, told Reuters by email. But it “will need to proceed through FDA stage II and III trials with many hundreds of patients enrolled to be adequately tested for safety and efficacy.”
While there is no single cure for ASD, Cavitt said, “it’s important to continue research on novel approaches to treating symptoms of autism that are safe and effective,” because “with multiple FDA approved choices we can continue to successfully treat increasing numbers of those with autism.”
James McPartland, a professor of child psychiatry and psychology at the Yale Child Study Center, told Reuters that “at present, suramin would not be considered a research-supported treatment for autism at all,” and the 2017 study on suramin “has not been replicated in an adequately sized group of children.”
McPartland said it is important to “consult with a medical professional when evaluating potential treatment options” because there is “a long history of unrealistic claims for the potential benefit of untested treatments for autism, and some can be harmful.”
Reuters has reached out to the FDA for comment.
VERDICT
Misleading. Suramin is not a proven cure or treatment for autism spectrum disorder (ASD), but preliminary research suggests it might have promise to improve symptoms associated with ASD.
Nice, thank you for sharing this ASPartOfMe. Sounds promising. Gives some hope that autism may be curable one day.
24 Feb 2023, 7:25 am
The article is so desperate to get the no cure for autism message that it ignores the whole science behind it the trial
This is bigger than autism as the whole cell danger response theory may hold potential to treat lots of different medical disorders of which some severe autisms may be one
Suramin was used to test a theory with the expectation new similar drugs would be developed that work in the same way but better
It was never about suramin but the theory itself
The article referenced the old stage 1 2017 trials but there have since been successful stage 2 trials involving larger numbers with meaningful improvement shown
I would recommend looking up cell danger response on YouTube you’ll see many interesting things on there.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
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