tag:blogger.com,1999:blog-62716487695149713.post6881638950873395256..comments2023-10-09T02:33:17.014-04:00Comments on ALS ADVOCACY: Prevalence Is A Red HerringALSadvocacyhttp://www.blogger.com/profile/15638650524805735994noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-62716487695149713.post-77057919883886034532013-09-09T10:41:01.952-04:002013-09-09T10:41:01.952-04:00You could look at NIH funding / per yearly deaths....You could look at NIH funding / per yearly deaths.<br /><br />http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf<br />http://report.nih.gov/categorical_spending.aspx<br /><br />ALS: 5000, $44M<br /><br />Hepatitis: 7,564, $378M in NIH spending (5.7x more funding per death than ALS)<br />HIV:8,369, $3.1B (42.1x)<br />Cervical Cancer: 3,939 $113M (3.3x)<br />Asthma: 3,404 $230M (7.7x)<br /><br />Drug Abuse: 40,000 $1B (2.8x)<br />Firearm homicide: 11,078 <br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-10344669004478780762013-08-11T18:15:53.657-04:002013-08-11T18:15:53.657-04:00I definitely agree ... we very likely don't ha...I definitely agree ... we very likely don't have 30,000 people "living" with ALS in the US. If incidence is approximately 5,000 per year, the death rate is 15-18 per day and 80% of us only live on average from 2-4 years - how could we possibly be anywhere near 30,000 "living"? Especially when we have NO life extending treatments available.Thomas Murphyhttps://www.blogger.com/profile/16855460736487636102noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-36534226161497832282013-08-11T07:55:27.487-04:002013-08-11T07:55:27.487-04:00If we make the case that a singular focus on preva...If we make the case that a singular focus on prevalence is fatally flawed, ALS will surely increase its share of funds such as NIH research funds significantly --<br /><br />http://report.nih.gov/categorical_spending.aspx<br /><br />ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-18051407396168875712013-08-11T03:19:47.670-04:002013-08-11T03:19:47.670-04:00Yes, prevalence is a red herring but so is inciden...Yes, prevalence is a red herring but so is incidence. Both are low. Nonetheless, great attention and resources have been focused on far rarer diseases (Pompe being one), funding development of targeted therapy. The issue is money to be made in treatment, including revenues for pharma, political currency for legislators, salaries for advocacy/research organizations...for whatever reason(s), ALS hasn't done a good job of smelling like cash.Anonymousnoreply@blogger.com