Low budget for Alzheimer's- many correlations to ME/CFS

[usedtobeperkytina]

Heard this on the radio. Seems we are not the only ones with an issue of funding.

http://hereandnow.wbur.org/2011/12/29/alzheimers-research-funding
Said stigma is part of the reason. Also, the demographics of the patient population.

I would love to hear your thoughts on this after hearing it.

Tina

 

[Snow Leopard]

Except that it is only underfunded compared to HIV/AIDS and a select group of overfunded cancers. If you compare societal disease burden in the USA (WHO estimates) to NIH funding, we find that Alzheimer's disease is funded at around 70-80 times the rate of CFS.

That puts things in a certain (ugly) perspective doesn't it.

 

[usedtobeperkytina]

Well

Well, there is 5.4 million Americans who have Alzheimer's disease.

Tina

 

[Snow Leopard]

I think the key with AD is that the prevalence is predicted to grow dramatically due to demographic factors and increasing life span, with about 10-12 million affected in the USA by 2040.

I'm not sure where 5.4 million figure that the Alzheimer's association states came from, the most recent estimate of those with AD and other dementias was 5.3 million in this 2011 study: http://www.sciencedirect.com/science/article/pii/S1552526010025094
But they also did a meta analysis combining it with previous studies and made an estimate for AD of 3.1 million.

On the other hand, the half a billion USD they receive in research funding from the NIH/CDC each year is still reasonable compared to other diseases. Funding will easily increase because AD is something that people see themselves being at risk at in the future, whereas most people never expect to get ME.

 

[biophile]

According to 23andme genetic testing I'm at twice the risk of Alzheimer's disease. I didn't listen to the radio broadcast, but Snow Leopard is correct, compared to ME/CFS, Alzheimer's disease is being showered in gold.

Alzheimer's disease

Estimated societal burden (USA) = $100 billion per year (http://en.wikipedia.org/wiki/Alzheimer#Social_costs).

NIH annual funding (USA) = ~$450 million per year (http://report.nih.gov/rcdc/categories).

Estimated prevalence = depends on age eg 0.3%/65-69yrs to 7%/90+yrs in Spain and 26.6 million sufferers worldwide (http://en.wikipedia.org/wiki/Alzheimer#Epidemiology).

(I used Wikipedia out of convenience but if anyone else has better sources I won't object!)

ME/CFS

Estimated societal burden (USA) = $19-24 billion per year (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078).

NIH annual funding (USA) = $6 million per year (http://report.nih.gov/rcdc/categories)

Estimated prevalence = depends on criteria etc "0.006% to 3.0%" (http://ajp.psychiatryonline.org/article.aspx?Volume=160&page=221&journalID=13) but often quoted figures include 0.2-0.4% of adults (Fukuda criteria) and 1(-4) million Americans and 17 million sufferers worldwide.

I'm guessing most of that $6 million per year goes to the CDC who seem to wasting it. The NIH isn't the only source of funding, but as a rough guide, to reach the equivalent annual funding for Alzheimer's disease, ME/CFS would need about 15-20 times more ($90-120 million). Are there any other diseases even close to the discrepancy between societal burden and funding as what exists for ME/CFS?

 

[Esther12]

The way Alzheimer's is commonly viewed and treated is pretty disgusting though, and has a lot in common with CFS. As others have said, demographics mean that it is now being treated more seriously, but there's still plenty of room for legitimate complaints.

Also, Alzheimer's is pretty nightmarish. I wouldn't trade places with anyone with Alzheimers.

 

[usedtobeperkytina]

Actually

Actually, the $6 million for ME/CFS is just NIH. The CDC gets another $4 million for CFS, according to 2009 request.

Given the estimated prevalence and amount spent, would like to see a per person amount for ME/CFS and AD.

The point the broadcast made is why AD doesn't get as much funding as other diseases of much lesser prevalence, for example, HIV and Cancers. This is especially a consideration since AD is always fatal (unless they die from something else while they are in the process of dying from AD). I think the question is not, does ME/CFS get enough when compared to AD, or vice versa. The question is why do these two diseases not get as much as some of the others?

That's why I posted this because some of the issues we face are also faced by AD.

Tina

 

[*GG*]

Perhaps it doesn't get as much funding because it affects people at a later stage in life when they are not likely to produce for society and are not all that far from death relative to the rest of the population?

GG

 

[*GG*]

Perhaps it doesn't get as much funding because it affects people at a later stage in life when they are not likely to produce for society and are not all that far from death relative to the rest of the population?

GG

PS I don't like Ed Markey.

 

[Snow Leopard]

The trends are slightly different. In ME or CFS there are few scientists doing research, so it is difficult for a post grad student to choose to specialise even if they wanted to.

For AD vs certain cancers and HIV/AIDS, I think it is because either the importance of those fields is overstated in our media etc, or that we 'fear' those particular diseases more than other diseases.

 

[usedtobeperkytina]

The

The radio program commented on a stigma with Alzheimer's. I was surprised. But it mentioned that people are embarrassed by the behavior of those with dementia. It has gone from hush, hush, in the closet to being mentioned. But has not gotten to the point of family advocacy, because of the stigma.

Also mentioned better lobbying for the other illnesses.

Interesting, one of the senators for my state has a wife with MS. And I saw on CSpan that presidential candidate Mitt Romney's wife has / had MS. Now, if that is two, and MS is half as common as CFS, then there are more politicians that have close family members with ME/CFS. But, would these discuss it openly? Why not? Stigma.

Interesting.