President Bush submitted his budget this week for fiscal year 2008. Critics say it’s dead on arrival; supporters say it’s on life support. We would say the budget – like some of the patients it neglects – is on kidney dialysis.
Okay, that’s a cheap shot, but the proposed $2.9 trillion budget is bad news for diabetics, and even if Congress amends it, the spending for diabetes will continue to fail to keep pace with the epidemic. The shortfall has intensified in the past couple of years, and with the spiraling costs for the Iraq war, funding for medical research and health care in general will be squeezed for years to come.
We believe that it doesn’t have to be that way, at least for diabetes, but making the disease a national priority – as was polio in the 1930s – will require a political leader who recognizes the true burden of this disease.
Here are the numbers from Bush’s budget proposal (unearthed by the American Diabetes Association): funding for the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) -- an NIH research division -- would be funded at $1.85 billion, less than a 1 percent increase from the previous fiscal year. Additionally, funding for CDC's Division of Diabetes Translation (DDT), which runs state-based prevention and control programs, would be flat-funded at $62.8 million.
The government’s flat-line commitment obviously does not reflect the growth of diabetes. An estimated 4,000 Americans are diagnosed each day, and one in three Americans born this century are expected to develop it. The federal government, in fact, is responsible for misleading the country about the true scope of the epidemic. The CDC says that about 20.8 million Americans have diabetes – a number that is widely quoted in the press. But when I called the CDC two years ago to question its methodology, the spokeswoman told me that its figure represents the estimated minimum number of people with the disease. For whatever reason, the CDC won’t say how many people it actually believes have diabetes, but it’s probably far more than 20.8 million.
NIH funding for diabetes has failed to keep pace for quite some time. Between 1980 and 2004, its budget for diabetes increased by 240 percent, to $1.1 billion, but its total expenditures grew by 261 percent. Thus, the percentage given to diabetes has declined slightly even as the number of diabetics doubled. As the New York Times calculated, the NIH in 2004 spent $68 for each diabetic, compared to $16,936 for each patient with West Nile virus.
Why has diabetes not received its fair share? We have our theories. One is historical: the discovery of insulin long created the misperception that diabetes was kind of cured, or at least not that serious. Another problem is the reluctance of many patients, particularly those with type 2, to aggressively advocate (or advocate at all) on their own behalf. (Concealment of the disease has a long history.) And finally, the media have underreported the type 2 epidemic because – in our view – type 2 disproportionately affects low-income minority communities, which are often ignored by the mainstream press (last year’s New York Times’ series is a notable exception).
The outlook is not promising. Every disease has a legitimate claim on the public purse, and with the political imperative of keeping taxes low combined with ever-growing military expenditures (Bush’s proposed budget asks for $141.7 billion for the fighting in Iraq and Afghanistan), diabetes is hardly well-positioned to receive greater funding.
Oddly, the sheer scope of the problem is our best hope: if political leaders understood how many people and families – and voters – have been affected by diabetes, those leaders would understand that self-interest alone would be reason enough to invest in diabetes’ research and wellness programs. If self-interest fails, then a personal connection may be necessary.
We know our history, and we believe what diabetes needs today is what polio got in the 1930s with President Roosevelt. FDR personalized the disease and made it a national priority. We need someone of that stature to make diabetes a crusade, to keep it in the news, to demand that our dysfunctional health care system be reformed, and to pour money into research until a cure is found.
Imagine the impact if, say, a Colin Powell or a John McCain – or an Oprah Winfrey or a Bill Gates – were to make diabetes their number one priority. We do not wish diabetes on anyone, but we do believe that a leader of this magnitude – motivated for whatever reason – is necessary to combat the epidemic. Otherwise, we’re going to be forever scurrying for crumbs when a massive cake is necessary.
-- James S. Hirsch
Very well said, and you're right that having a national leader personally impacted by the condition would certainly elevate the stature of diabetes in terms of public priority, but as a community (and a society as a whole) we frankly cannot afford to sit by and wait for that to happen.
Think what might happen if diabetes was represented differently than it is today, without all the smiling, happy people usually pictured in advertisements for glucose meters showing us that diabetes is controllable, but its up to us. We need a public relations campaign to present diabetes as as public enemy #1. Instead, the public perception is people dancing around showing that the FreeStyle blood glucose monitor means "virtually pain-free testing".
My friend Deb Butterfield said it best in an article she wrote called "Perception Vs. Reality" (see http://web.archive.org/web/20050210195046/http://www.insulinfreetimes.org/itimesv600.htm for the original article). She summarized it best when she wrote:
"In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world's oldest, deadliest, and most pervasive diseases."
As patients, we must to stop pandering to prevalent perception by becoming far more vocal about the true state of diabetes and diabetes care today. First and foremost, we must stop using the word "control" when the reality is that we only have "control" over a handful of the variables that influence blood glucose levels. We need people to realize that this is a horrible condition and that managing is good for the diabetes industry, but often fails to guarantee many patients that they will avoid all complications, and no study -- not even the DCCT -- proved that they are completely avoidable.
Who should be leading this PR campaign? Ideally, the American Diabetes Association, but I have no hope of that ever happening under the current leadership. But I'll be damned if I allow others to misrepresent this condition in the press, which is why I routinely write to the editors of publications which misrepresent diabetes or engage in what I call "selective disclosure of the truth. I would encourage others to do the same -- if more of us start doing this, perhaps we will make a small dent in the perception gap that now exists.
Posted by: Scott | 02/06/2007 at 12:01 PM