Fellow PWDs, do you know your rights? Take Note: there is now an official International Charter of Rights and Responsibilities for People with Diabetes, developed by the International Diabetes Federation and published yesterday.
In truth, this straightforward four-page document (click here for PDF) is more of an “international declaration” since it doesn’t carry any legal weight. But it is nevertheless chock full of very specific “suggestions” in four categories:
1. The Right to Care
2. The Right to Information and Education
3. The Right to Social Justice
4. Patient Responsibilities (outlining what patients should be handling themselves, such as managing their health and treatment plan)
So if it’s not legally binding, what’s the Charter good for? The aim is to provide a starting place for governments who are creating health policies and programs, and to provide a set of guidelines that were crafted by authorities in the diabetes community. The Charter is based on the three main guiding principles that IDF published last November in their “Call to Action on Diabetes,” which are: improving health outcomes for people with diabetes, preventing the development of type 2 diabetes, and stopping discrimination against people with diabetes. Work on the Charter was carried out by a small group of experts under the leadership of IDF President-Elect Sir Michael Hirst, and then approved by the governing board of the Belgium-based International Diabetes Federation.
IDF, by the way, has been at the forefront of diabetes initiatives around the world. As an umbrella organization of over 200 national diabetes associations in over 160 countries, it represents all people with diabetes and those at risk. You might remember that IDF led the passing of the first-ever UN Resolution on Diabetes, and they manage the Life for a Child program, providing life-saving insulin to kids in need around the globe.
“We really want governments to optimize the health and quality of life of people with diabetes to enable them to have as normal a life as possible,” said Sara Webber, Media & PR Coordinator for IDF, when we reached her in Brussels via phone. “That’s really the goal of the Charter: stop discrimination, help people realize their full potential, and also to empower people to be at the center of their own diabetes care.”
In many parts of the world, especially in developing countries, diabetes “promotes a culture of secrecy that can create barriers to services, employment, and even marriage, and may stop people with diabetes playing an active role in society.” Even the US sees efforts to discriminate against people with diabetes.
We love the idea of a Charter for PWDs, but do wonder if this will be just that… another nice idea that is completely unenforceable and brushed aside by our government because this whole “taking care of diabetes” thing simply costs too much. It sure would be better to have something legally binding, more like international human rights laws (treaties system) governed by the UN. Wishful thinking? Probably…
But maybe we’ll see some changes coming up in September, when the IDF attends the UN High-Level Meeting on Non-communicable diseases, which include cancer, cardiovascular disease, chronic respiratory disease and diabetes. The Charter is a key element of IDF’s campaigning for “coordinated and concerted international action to tackle the diabetes epidemic” before, during and after the Summit.
“It really gets back to providing prevention care, improving health care systems, and providing support and care for people with complications,” says Sara. IDF also hopes the charter will influence governments to adopt policies to help people with diabetes and to make health issues a top priority, such as providing healthy nutrition and encouraging increased activity. “We plan to make diabetes loud and clear at the Summit, and not get lost among the other non-communicable diseases.” (Wow, battle of the diseases?)
In addition to the Charter, the IDF is also collecting electronic signatures for a petition to provide essential care for people with diabetes that they will present at the Summit. So if you agree (and you do agree, right??), then click here to automatically sign. Inbound visits count as signatures, so there’s no need for you to provide personal info.
Although Sara admits the Charter is very ambitious, she says, “We’re hoping that people who are involved in advocacy can take this along to any meetings they may go to.” For US-based advocates like us, it can provide a baseline of expectations for what needs to change, plus the IDF provides some authority and clout when presenting to folks in Congress, for example. For those living outside the US, how about touting it to your own government representatives?
OK, the IDF doesn’t have any specific timelines or expectations for when they might see some of these “rights” actually enforced, but Sara says, “We’re hoping that some of the governments with implement some of the points.”
Like I said, these “charters” or “declarations” can be pretty wishy-washy since they’re so easy to ignore. But if we rally together around the principles presented, maybe we can actually do something to help PWDs around the world. This is one chronic illness that so many people needlessly die from — since there are great medicines and treatments available. Hopefully we can do something to stop the needless suffering.
So, what do you all think of this international Charter? Is it just more words-words-words, or can it really help the cause?
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I wrote about this too, today, I think it’s wonderful! However, I too worry that it will be soon forgotten since “charters” are these old sounding documents which read like a wish list to Santa Claus….
However, like you pointed out, we can choose to back this, to “rally together” and to put this charter in the faces of our politicians, doctors, educational programs, etc, in hopes they’ll help raise the bar of how people with diabetes are treated. And we can certainly help raise the bar for treatment of those living in developing and 3rd world nations-they have a long way to go and need our help.
This is great. Thank you for sharing it, Allison (and Amy)!
I would like to echo – thank you for sharing.
This seems like a “nice” document and a nice idea – but I think there is too much emphasis on the preventable aspect of diabetes, and the fact that there are more affordable options. Certainly this is true. It says:
“Most diabetes can be prevented or delayed. Investment in prevention makes economic sense. Effective, low-cost treatments and care exist for diabetes that cannot be prevented. With early diagnosis and effective management, people with diabetes can live long, healthy and productive lives, and health systems can save on expensive complications such as kidney failure, blindness and amputations.”
While this is true, at no point in the document does it express challenges to those who already have it – and the extraordinary costs that PWDs have to manage the disease. For example – even the test strips can cause financial hardship for people. This document doesn’t even address those who need the technology to have quality of life – ie pumps, cgms, supplies, etc.
IMO, this document does not provide a compelling case for my governments to invest funds in the more expensive aspects – to find a cure, better and more affordable medications, or in the technologies that assist PWDs manage their diabetes.
To tag onto my last comment, this document does look like a very good educational piece, especially if fleshed out with a little more info about the different D types.
The charter states that “People with diabetes have the right to early diagnosis…” Even more fundamental than that is “correct diagnosis.” Most people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes, a different disease altogether, which can have devastating impacts due to improper treatment. So I would say that the charter is simplistic and doesn’t even address the most fundamental aspect of appropriate care: correct diagnosis, correct treatment.
Let me point out that eleven years into the “new millenium” — ten, if we properly start the third millenium 01 Jan 2001 (since there was no “year zero”) — we are nowhere near “on track” for meeting the World Health Organization’s Millenium Development Goals, nor are they likely to be met within twice the planned timeframe. The issues? Overall costs, logistics, local politics, and resistance from multiple parties.
There’s no reason to believe that a “Diabetes Bill of Rights” should be any different.