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The Simon Foundation for Continence

Why Isn't There More Research Being Done to Find Cures for Incontinence?

I just read this article (below) and it really hit some important points. And so that's why I am sharing it with all of you. Research and research dollars for incontinence is pretty low compared to so many other issues. But when you think about the fact that more than 200 million people have incontinence, this really is not right. And that is an old number, and is the actual number, we believe, are actually much higher. And how do we change that? By getting more people to understand the enormity of the problem, how many people have incontinence, the impact on people's lives who have any sort of incontinence, and that the number of treatments are few and far between. And that research on even the ones we have is often not well done and inconsistent.

Take a read. It's not long. It's to the point. And then see if you can help make the change happen. We need to all work on breaking down the shame and stigma that surrounds incontinence.

theconversation.com/inconti...

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Thank you for the post and the article. Both look highly credible but I fear the situation might be even worse: even if cures could be found there might be reluctance to adopt them.

Between January and July 2016 I had 23 blockages in my suprapubic catheter. Then I found a way of preventing them. I have had none since. Thinking that this should be of interest to others with a similar problem, I wrote the method up. With a few exceptions, there has been no interest.

As the call handler of the night nurses who were repeatedly called out to unblock my catheter said when offered the paper:

'We don't give out email addresses over the phone'

or as another nurse said:

'No thanks. It's something they can live with'.

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Getting new ideas to the right people - that is the people that can respond and do something with a new idea - is really, really tough. New ideas need to get to the urology researchers who are truly interested in finding new ways of managing and treating incontinence, and also have the resources to test and replicate what you have done on a big scale to make sure that it consistently works and is safe for those with your type of incontinence. So finding that person, with all the needed resources, is difficult at best.

Adoption of new techniques needs to be founded on a clinical study(ies), and that requires resources & the funding that is often lacking -- as this article pointed out. If there was more funding for research, then we would have more clinical studies and more new techniques could be studied. The research results from the clinical studies would then be shared with the urology world at conferences, meetings, and in peer-reviewed publications.

We need, in the US, to write to our people in Congress and loudly complain that the US NIDDK (part of the National Institutes of Health) does not have enough research funding dollars to make headway into looking for cures and better treatments for all types of incontinence, which affects more than 33 million Americans. The people at NIDDK, if they get the monies, can then create grants for researchers across the US to do more work in this field. So we need to "bang the drum loudly" in order to make more progress.

But with budgets getting slashed across all sections of the US government, this is going to be a difficult fight, but one that is more than worth our effort and time.

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I just found this introduction to an issue of Health Affairs, published Feb. 6, 2018. This intro also indicates why there can be such a long delay in adopting an innovation in health care. I was shocked at the 17 years number! But it does help us understand the delay sometimes in getting an innovation into accepted practice. I help the programs mentioned help to streamline the process, and bring helpful innovation into practice in a more timely manner.

ahrq.gov/news/blog/ahrqview...

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