The State of Oregon, like many other states, is faced with a serious dilemma: how to help its most vulnerable citizens obtain health care that is affordable. Local meetings, news and commentary about the issue have brought major stakeholders together to discuss solutions to the issue, particularly as it relates to needy dialysis patients.  
 
Recently, the board of the Oregon Medical Insurance Pool (OMIP)—the state’s high-risk health insurance pool—began to consider a proposed rule that would keep charities like the American Kidney Fund (AKF) from providing premium assistance to patients enrolled in the pool because AKF receives a substantial amount of financial contributions from dialysis companies. As President and CEO of the American Kidney Fund, I appeared before the OMIP Board to discuss with its members and other stakeholders the significant mission of our organization and the programs that support our mission of supporting those with and at risk for kidney disease. I shared a critical perspective on the issue – the stories of real patients enrolled in OMIP who receive financial assistance from AKF in order to maintain their healthcare coverage.
 
We are pleased that after hearing our testimony, the Board decided to take additional time to look deeper into the issue and work directly with dialysis providers toward solutions on the issue of treatment costs. After all, how can a high-risk health insurance program for vulnerable patients be effective if the patients can’t afford the insurance premiums and are subsequently denied access to premium assistance programs? AKF is committed to working with OMIP to help address these issues.
 
When I spoke before the Board of OMIP, I clarified for them AKF’s role as a charitable organization and our role within the renal community. AKF has 83,000 contributors nationwide. These individuals, corporations and foundations support us because they believe in our work of fighting kidney disease through direct financial support to patients in need; health education; and prevention efforts. Our grant assistance programs help 1 out of every 4 dialysis patients in the United States with health insurance premiums, as well as with the cost of medications and nutritional supplements, transportation to and from dialysis, and other treatment-related expenses. Yet our mission extends far beyond financial assistance. Millions of people nationwide benefit annually from our efforts to fight kidney disease through health education and prevention efforts. Our new national campaign, Pair Up: Join the Fight to Prevent Kidney Disease, empowers women to protect themselves—and the people they love—from kidney disease. We reach thousands of people each year with free kidney health screenings in communities nationwide, as well as extensive online health education materials and courses and a toll-free health information HelpLine (866.300.2900).
 
Our Health Insurance Premium Program (HIPP) is designed to help patients obtain the comprehensive health care they need by helping them to pay health insurance premiums.  When I spoke before the Board, I explained that HIPP has operated in strict accordance with the US Department of Health and Human Services, Office of the Inspector General (OIG) Advisory Opinion 97-1 since the program began in 1997. AKF provides grants to low-income dialysis patients without regard to whether a patient’s provider has made a charitable contribution to AKF, and we have absolutely no role in advising or influencing patients on the selection of their insurance carriers or healthcare providers.
 
One OMIP Board member asked why AKF focuses its assistance on dialysis patients. The answer is simple: Our resources are limited and we focus them on supporting programs and activities directly related to our mission. Since we were founded in 1971, our mission has been to help dialysis patients. In fact, the American Kidney Fund began in 1971 with a group of friends coming together to raise funds to help one person pay for dialysis care. And, although times have changed over the past 41 years, one thing has remained constant: Being on dialysis presents a unique level of economic hardship to many who depend on dialysis to live. The out-of-pocket costs have always been high, and today, fewer than 20% of dialysis patients ages 18 to 54 are employed[1]. For these patients, out-of-pocket expenses can represent a serious barrier to care.
 
Throughout our 41 years of existence, we have implemented numerous programs to achieve our mission of helping patients access the care they need to survive. At the same time we strongly support and advocate for improved access and quality care for all patients with all stages of kidney disease.
 
We understand and share Oregon’s concern regarding the very high cost of healthcare. The American Kidney Fund is also concerned with making sure patients get the health care they need. In taking action to address the high cost of care in Oregon, it would be unfortunate if the Oregon patients we help who are enrolled in OMIP today, or similar patients who may need our help in the future, are not able to receive critical financial assistance from AKF.
 
We want to continue helping all of the nearly 1,000 patients we now assist in Oregon, as well as others who will need our help in the future. We are pleased that the OMIP board is taking additional steps to consider patient-centered alternatives to the proposed rule, including working with health care providers to negotiate the rates that OMIP pays for treatment. Barring the American Kidney Fund from helping needy kidney patients in Oregon is, clearly, not an effective approach to reducing the overall cost of health care, including the cost of dialysis.

[1] Kutner N, Bowles T, Zhang R, Huang Y, Pastan S. Dialysis facility characteristics and variation in employment rates: a national study. Clin J Am Soc Nephrol. 2008; 3: 111–116.
 
Ms. Burton is president and Chief Executive Officer of the American Kidney Fund (www.kidneyfund.org), a nonprofit organization whose mission is to fight kidney disease through direct financial support to patients in need; health education; and prevention outreach.