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In February, ALS News Today reported the results of an online survey that I found very interesting. Of the 290 U.S. residents who completed the survey, over two-thirds (200) of them were people living with ALS or answering on behalf of someone with the disease. More than half (63.54%) of 181 patients responding reported having sporadic ALS, and 11.05% said they had familial ALS. The remaining had less common variants of ALS, such as progressive bulbar palsy or primary lateral sclerosis. (you can read the full article here: https://alsnewstoday.com/news-posts/2022/02/04/life-quality-struggle-but-most-not-switching-treatments-us-als-patient-survey/)
What I didn’t find very surprising was more than half of the respondents with ALS are dissatisfied with their quality of life and pessimistic about the future. But what surprised me was the majority responding reported being satisfied with their health insurance provider and said they were not considering switching treatments. Satisfied? I seem to recall many in the ALS community complaining about Medicare’s coverage and the lack of coverage by private insurers. Also, many pALS seem to be in search of new treatments and join clinical studies just for that reason.
Do you think this survey represents your ALS experience and views? In what areas do you differ from the majority who responded? What additional questions do you wish had been included in this survey?
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I pretty much match the majority results. Would I like to find a treatment.? Of course, but also realize they aren’t there yet. So far Medicare has been fine for me but time will tell. Trials are hard to get in if you aren’t newly diagnosed and frankly are not testing life changing stuff. For the newly diagnosed I think they look on them with more hope.
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