\ ALS Research \ Use Of Aids Cocktail In People With ALS
Last week, Canadian media released a story about a woman with ALS who has been treated for the last 18 months with an AIDS cocktail. She and her ALS physician, Dr. John Turnbull of McMaster University in Ontario, Canada, report that her disease has slowed down and some symptoms have improved or gone away. This is an encouraging report and ALSA is pleased to learn that Dr. Turnbull has begun a small clinical trial with this cocktail of AIDS drugs. Results of this trial will be available later this year.
ALSA's perspective and comments:
· There is no peer-reviewed evidence at this time that indicates that the "AIDS cocktail" also known as HAART (highly active antiretroviral therapy) is beneficial to people with ALS. There can be significant side effects with this therapy. Until more is learned, ALSA is cautious about taking the report of a single case study as an indicator of what the treatment might mean to a population of people with ALS.
· Two reports appeared in the medical literature in 2001 describing
studies in which HIV positive patients with accompanying ALS-like
syndromes showed stabilization or partial recovery of the ALS syndrome after starting antiretroviral therapy.
· Encouraged by these initial published reports, ALSA is sponsoring a small pilot study to test whether patients with ALS who are negative for HIV would show similar reversal of symptoms when treated with Idinavir, a protease inhibitor (different from that in the HIV cocktail, but in the same class). Idinavir was selected because it can cross the blood brain barrier. This study will be completed in May 2003 at which time results will be made available
Studies to investigate whether retroviruses are involved in ALS are in
progress. The protease inhibitor Indinavir and the related compound in the AIDS cocktail may be effective in preventing caspase-dependent apoptosis (a cell death pathway involved in motor neuron degeneration). More evidence from animal studies are necessary to support this hypothesis.
· ALSA is currently unaware of any other trials using the AIDS cocktail.
ALSA will keep the ALS community informed should we be alerted to any other ongoing efforts.
ALSA is always watching for anything that will make a difference in this horrendous illness. ALS medical literature includes reports of some cases in which the individual's disease fluctuates. The ALS community needs to have data from carefully controlled and well-designed laboratory and human studies to be confident that this or any treatment is truly safe and effective for ALS. The published results of this one case study, the pending results of the Indinavir study, and the data from the small clinical trial Dr. Turnbull has begun will provide important information to substantiate whether this therapeutic approach holds the promise for others with ALS.
PEOPLE WITH ALS SHOULD CONSULT WITH THEIR NEUROLOGIST CONCERNING THIS INFORMATION.
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Use Of Aids Cocktail In People With ALS
Clinical Bulletin from The ALS Association National OfficeLast week, Canadian media released a story about a woman with ALS who has been treated for the last 18 months with an AIDS cocktail. She and her ALS physician, Dr. John Turnbull of McMaster University in Ontario, Canada, report that her disease has slowed down and some symptoms have improved or gone away. This is an encouraging report and ALSA is pleased to learn that Dr. Turnbull has begun a small clinical trial with this cocktail of AIDS drugs. Results of this trial will be available later this year.
ALSA's perspective and comments:
· There is no peer-reviewed evidence at this time that indicates that the "AIDS cocktail" also known as HAART (highly active antiretroviral therapy) is beneficial to people with ALS. There can be significant side effects with this therapy. Until more is learned, ALSA is cautious about taking the report of a single case study as an indicator of what the treatment might mean to a population of people with ALS.
· Two reports appeared in the medical literature in 2001 describing
studies in which HIV positive patients with accompanying ALS-like
syndromes showed stabilization or partial recovery of the ALS syndrome after starting antiretroviral therapy.
· Encouraged by these initial published reports, ALSA is sponsoring a small pilot study to test whether patients with ALS who are negative for HIV would show similar reversal of symptoms when treated with Idinavir, a protease inhibitor (different from that in the HIV cocktail, but in the same class). Idinavir was selected because it can cross the blood brain barrier. This study will be completed in May 2003 at which time results will be made available
Studies to investigate whether retroviruses are involved in ALS are in
progress. The protease inhibitor Indinavir and the related compound in the AIDS cocktail may be effective in preventing caspase-dependent apoptosis (a cell death pathway involved in motor neuron degeneration). More evidence from animal studies are necessary to support this hypothesis.
· ALSA is currently unaware of any other trials using the AIDS cocktail.
ALSA will keep the ALS community informed should we be alerted to any other ongoing efforts.
ALSA is always watching for anything that will make a difference in this horrendous illness. ALS medical literature includes reports of some cases in which the individual's disease fluctuates. The ALS community needs to have data from carefully controlled and well-designed laboratory and human studies to be confident that this or any treatment is truly safe and effective for ALS. The published results of this one case study, the pending results of the Indinavir study, and the data from the small clinical trial Dr. Turnbull has begun will provide important information to substantiate whether this therapeutic approach holds the promise for others with ALS.
PEOPLE WITH ALS SHOULD CONSULT WITH THEIR NEUROLOGIST CONCERNING THIS INFORMATION.
Used with permission
| Posted On: Wednesday, February 12, 2003 Modified: Wednesday, February 12, 2003 Category: ALS Research Posted By: |