Saving lives is about more than media awareness of a disease. It is about doctors making sure their patients understand all risks for a disease. And ultimately that saves lives and money.
Breast cancer awareness, for instance, is aided by high profile public efforts such as the Avon 39: The Walk to End Breast Cancer, or the Susan G. Komen Race for the Cure. Even when using what many criticize as misguided language concerning cancer survivors, the blog about a Komen ad this week went viral, bringing even more media attention.
February is Heart Health Month, and millions wore red recently to demonstrate the need for heart health, thanks to the American Heart Association. Even the ice bucket challenge completed by millions last year helped The ALS Foundation earn dollars and awareness.
Yes, increasing visibility about any disease is important for informing people about the importance and need to take preventive measures to change behavior, seek out screening tests and start treatment early. Such efforts offer greater social support and reduce isolation for people with the disease.
But chronic kidney disease -- without the splashy races, ad campaigns, and extensive media coverage -- falls below the public radar. And because of that, a patient may be less likely to ask his or her doctor how to prevent it or even understand how it develops.
March marks National Kidney Month in the U.S. and World Kidney Day on March 12. The National Kidney Foundation and its affiliates raise awareness through their own programs and events; in 2014, the National Kidney Foundation raised more than $23 million.
Despite these efforts, on a day-to-day basis, kidney disease does not rise to the same level of public consciousness or concern as cancer or other afflictions, and that is a problem.
There are more than 10 million people with chronic kidney disease or 20 people per million. Of those with the disease, 600,000 of them have end-stage renal disease according to the United States Renal Data System.
One out of three people are at risk for kidney disease according to the National Kidney Foundation. Because chronic kidney disease and end-stage renal disease are not in the public consciousness (to the level of cancer, ALS or heart disease), many people remain unaware of the need to do basic screening for kidney disease and its chief risk factors -- diabetes and hypertension. This lack of awareness is common even though blood and urine screening tests are inexpensive, widely available and simple to perform.
Many individuals with chronic kidney disease are unaware that they even have it, as research studies in the U.S. have consistently shown. A study published in the American Journal of Nephrology found that only 6 percent of the 2,615 adults interviewed with abnormal kidney function were aware of having the disease.
But it was not clear why patients were unaware.
Perhaps that is because most people don't realize the vital role that kidneys have in overall health. They remove wastes, regulate electrolytes in the body, help control blood pressure control, and produce important hormones. What most people typically don't know is that patients with chronic kidney disease do not feel ill until their kidney disease is very advanced.
Other studies have identified a number of related problems with the care of patients with kidney disease, which might contribute to patients' lack of unawareness about their kidney disease. For example, patients may not have regular primary care and some patients may be in denial that they are sick. Late referrals to nephrologists are common, and patients with kidney disease often have competing clinical concerns that require attention, such as heart disease. If the doctor is quiet about treatment, patients might assume that they are all right.
The lack of awareness has serious health consequences because patients and healthcare providers miss an important opportunity to intervene earlier in their disease to slow the progression of the disease and to appropriately plan for treatments. This relative silence about kidney disease is concerning because kidney disease is a silent killer.
Yet ironically, the two leading causes of kidney disease -- diabetes and high blood pressure -- are well-known, common diseases.
Non-profit organizations such as the American Society of Nephrology and the National Kidney Foundation are advocating for this type of change in awareness and outreach. At the urging of these organizations, the Government Accountability Office was recently commissioned by U.S. Rep. Tom Marino (R-PA) and John Lewis (D-GA), to assess the "adequacy of Federal expenditures in chronic kidney disease research relative to Federal expenditures for chronic kidney disease care."
The National Institutes of Health -- the leading funder of medical research in the United States -- spent nearly $7.8 billion to support research on all cancers in 2013, but spent only $551 million for kidney disease (or $30 per patient) in 2013. The estimated 2015 NIH budget increased to more than $8 billion for all cancers, but remained at $551 million for kidney disease.
The amount of research funding for kidney disease seems disproportionately low compared to the high prevalence of chronic kidney disease, and its costs.
Chronic kidney disease is costly. Patients with chronic kidney disease represent only 10 percent of the U.S. Medicare population, yet overall Medicare expenses for treatment of chronic kidney disease totaled $44 billion in 2012, and represented 20 percent of Medicare expenditures according to the United States Renal Data System 2014 Report.
The costs are also great for end-stage renal disease, which includes dialysis and transplantation. While these patients comprised just 1 percent of Medicare enrollees in 2012, Medicare spent $28.6 billion on the end-stage renal disease program. That accounted for 5.6 percent of the Medicare budget in 2013, as the United States Renal Data System reports.
As the spending on kidney disease continues to rise, greater emphasis should be placed on prevention of disease progression and optimizing management of end-stage renal disease. That includes early referral for kidney transplantation or home hemodialysis, as governing bodies, foundations, and the United States Renal Data System 2014 have suggested.
But it is not just a fiscal disconnect. Public awareness is a life and death issue.
Elisa Gordon, Ph.D., M.P.H. is Associate Professor in the Comprehensive Transplant Center at Northwestern University Feinberg School of Medicine and a fellow with The OpEd Project's Public Voices Fellowship at Northwestern.
Michael Fischer, M.D., M.S.P.H. is Associate Professor of Medicine at the University of Illinois at Chicago.