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
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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?