Advocacy to governments: What is more likely to work?

[Kati]

I have spent more time lately doing advocacy work lately, notably aimed at the Canadian government.

I have little response from them despite sending letters to health minister, public health agency, the national health research body, my own MP and else.

What I wonder today is, what is effective and what is not effective in doing advocacy campaigns?
Is social media helpful even though I don't get answers?
What angle should be explored?

Stigma and discrimination compared to other diseases?
Numbers of patients sick?
ME being more prominently a woman's disease?

How do you address ME not belonging to any medical specialty?


I think that at this time, a little strategy could help. I will consult with a patient advocacy organization that I have in mind but I thought I'd ask the experts over here.

Thanks !

 

[Esther12]

I'm afraid that I don't know what the situation in Canada is like. It could be worth trying to think 'What's the most obvious and serious problem with the way CFS is treated?' - then focus upon that.

I think that the way in which CFS is viewed makes any patient advocacy much more difficult, I'm afraid. Good luck.

 

[Megan]

Hi Kati,

Have just seen this thread. I have been involved recently in some work in Australia, my thoughts are:

* Understand the local politics in conditions, don't just assume that what is happening in your country is the same as everywhere else. There may be particular information to Canada that is useful for campaigning purposes. E.g. in Australia we have found the use of an Australian "burden of disease" study to be very useful as an effective campaigning, but as I understand it (not sure?), this analysis has not been done in most other countries.

* Talk to people from effective advocacy groups for other illnesses, as surely they have models that work within the system of your country. We have received some wonderful advice from speaking to such people (MS and HIV). Additionally reading some of the history of what others have done outside of CFS, for other illnesses, is also important. I had my eyes opened by reading an Australian book called "learning to trust" that documented the history of how HIV was dealt with in Australia - it was a different story to the US, and made me aware of how important it is to understand the local context.

* The CEO of our local ME/CFS society told me that one of our problems is people writing to MPs or other people of authority regarding areas that outside the jurisdiction. In short, before you send a letter to anyone make sure they are the person responsible for the issue you are writing about. It is surprising to find out it is not always the person that you think might be.

Of the things named in your post, my guess is the following two are the most important:

Stigma and discrimination compared to other diseases?
Numbers of patients sick?

Giving estimates of economic costs is probably also important.

Megan.

 

[alex3619]

Hi Megan, could you elaborate on using the burden of disease study? It sounds like an interesting approach and I have tried to do such things before but with limited success. The other thing I found helpful was shotgun emails - don't just email the minister. Email their opposition and equivalent ministers and opposition at all levels of government ... and make sure the email mentions this is being done. Oh, and send copies to media too. Bye, Alex

 

[Kati]

Thank you Megan, it helps a lot

 

[Megan]

No worries Kati,

I only saw the petition you posted on another thread after I had posted above. I thought the petition is great, signed it too!

Alex, the "Burden of Disease" study can be downloaded from the Australian Institute of Health and Welfare website at http://www.aihw.gov.au/publication-detail/?id=6442467990&libID=6442467988. It is a big report, but the key concept to understand is something called the "disability adjusted life year"explained on pages 11 and 12 of the report. Wikipedia also has an entry on the disability adjusted life year, which is probably easiest way of understanding it http://en.wikipedia.org/wiki/Disability-adjusted_life_year.

Megan.

 

[alex3619]

Thanks Megan. It turns out I had already read this, I just haven't used it in advocacy yet. There are issues with DALYs that I was investigating some months ago, but I have since forgotten most of it. It is difficult to get good articles on this. The DALY and another similar marker have become the dominant marker in disability and illness in the last decade or so. However the data they base it on is woefully inadequate. Its nothing but a great big guess so far as I can see. We might know more if their were better explanations of data and limitations on data. Still, even bad data can be better than no data in some cases. Personally I think the CFS and ME impact is massively under-rated. If CFS, ME, MCS, FMS could be solved our economic woes would be very much less - and if we developed and marketed the solutions we would be making billions more. There are very good reasons for suggesting research is the only solution, and that means government funding. One of the things that got lost in DALYs was the impact of severity of disease. CFS used to be at the top of the pile (though I think if we remove ME and post it separate it would be higher). Only pancreatic cancer and another rare cancer were higher, and they were both rapidly fatal. Now that severity is lost in the DALY.

What is more their risk factors are over-simplistic and over-generalized. I was going to investigate this further but got side tracked into another project.

Bye, Alex

PS Here is part of what concerns me with the DALY: "We model incidence and duration using DisMod, assuming no excess mortality and remission rates which gave an average duration of 7.3 years (Reyes et al. 2003). We assume that 90% of the time people with chronic fatigue syndrome are symptomatic, using findings from the 1993 Australian disability survey. In the absence of an established disability weight for chronic fatigue syndrome we use the disability weight estimated for the previous Australian burden study."

The only ways they can get a 7.3 duration are with old data or bad data, although its possible a hidden epidemic could result in the same finding as most cases are new cases. I think this low burden is an artifact of poor community diagnosis. I think the burden is much higher. I am also concerned that nobody is tracking mortality rates for CFS or ME in Australia, or for that matter anywhere. Also the disability burden weight downplays the severity of the illness.

 

[Megan]

Hi Alex,

I agree there are methodological problems with the analysis and that the true burden is almost certainly a lot higher. I understand they used to Wichita study is an indication of prevalence rates. Had this also been higher, the burden would have been much higher as well.

But what is important about it, is that it still shows a relatively high disease burden for ME/CFS compared to a number of other illnesses, despite these limitations. Perhaps even more importantly, these are official statistics, and the Australian Institute of Health and Welfare and the Burden of Disease report is highly regarded and recognised both politically and within the health sector in Australia, so it still makes sense to use it regardless of there being methodological issues. I would add that most CFS studies, particularly epidemiological ones, have methodological problems. And I expect that there are also methodological problems in the work on many of the other illnesses as well.

I'm not sure that I agree with your comment

One of the things that got lost in DALYs was the impact of severity of disease.

I understood the point of the DALYS was to encapsulate both the severity and the prevalence of an illness within one indicator, in fact that is the ingeniousness of this particular methodology. The disability weightings they applied to CFS seemed high enough - from memory they had three levels from mild to moderate to severe.

Megan.

 

[alex3619]

Hi Megan, I agree we should be using things like this for advocacy. Its a no brainer.

On the disability weighting I am going back to my highly flawed memory as I do not have time to research this again just now. CFS is regarded by some as equivalent or worse than MS, kidney failure, severe AIDS (but not final two weeks), chemotherapy, various pulmonary disorders and so on. In the disability weight rankings I was looking at months ago (January?) it was rated a lot less than any of these diseases. It is likely that in pursuing advocacy we might like to keep this in mind and drop a hint or two, with quotes etc., that indicated the severity weighting is too mild and that the problem is worse than claimed.

Bye, Alex

 

[Snow Leopard]

I've had a look at the disability weightings and they're similar to the ones I've come up with. As Megan said, one of the problems is the prevalence they used - 0.25% as opposed to the 0.42% from the Chicago study. Using the Georgia population study figure would be interesting too...

Dismod is a definite fudge, but they do it for many conditions, so..

 

[dmbaken]

Hi,

Does anyone have the references for these studies handy. I have particularly interested in the chicago study.

Thanks

Don