1. Provide the title of your story or series and the names of the journalists involved.
Dialysis: High Costs and Hidden Perils of a Treatment Guaranteed For All Robin Fields
2. List date(s) this work was published or aired.
Nov. 9, 2010 Nov. 10, 2010 Dec. 9, 2010 Dec. 22, 2010 Dec. 23, 2010 Dec. 28, 2010
3. Provide a brief synopsis of the story or stories, including any significant findings.
Dialysis holds a unique place in American health care. In the 1960s, it was the country's signature example of rationing, an expensive miracle therapy available only to a chosen few. A decade later, when Congress created a special Medicare entitlement to pay for it, dialysis became the nation's most ambitious experiment in universal care. Today, dialysis is a lifeline for almost 400,000 Americans. Yet, until our series of stories about this insular patch of health care, few outside of it were aware that — despite massive outlays by U.S. taxpayers — Americans endure some of the worst results for dialysis care in the industrialized world. I spent two years investigating how a system born of compassion had gone so wrong. What I found was profoundly disturbing: A system infected by lax and ineffective oversight; provider profits that trumped patient needs; and a cloak of secrecy hiding the real human costs. In the most egregious cases, dialysis patients had been killed by the very therapy meant to sustain them. After Henry Baer's dialysis line disconnected, spraying blood everywhere, a panicked technician exposed him to a fatal infection. James "Tug" McMurry suffered a massive and fatal brain hemorrhage when caretakers overdosed him with potent blood thinners. Because staffers failed to follow simple safety procedures, Barbara Scott's bloodline separated, and the 73-year-old retired bookkeeper went into shock as her blood silently leaked out beneath her. Scott died of heart failure within weeks. Dialysis patients commonly received care in settings that were unsanitary and unsafe. I found clinics that crawled with insects and treatment chairs caked in blood. Medication errors were routine. In hundreds of cases, breaches of infection control exposed fragile patients to hepatitis or other diseases. On paper, federal and state health agencies regulate dialysis. Yet many incidents in which patients died or were injured were never reported to — or investigated by — any outside authority, I discovered. In many parts of the country, inspectors had fallen far behind. Toothless enforcement enabled facilities with flagrantly poor track records to keep operating without meaningful penalties. Although dialysis is paid for mostly by Medicare, I found that corporate providers have come to dominate the system, reaping billions in profits with an assembly-line approach to care. Government payment policies have created perverse incentives that undercut quality and spurred a sweeping industry consolidation that has left dialysis patients with fewer choices among providers. Early on, I learned that, for years, the federal government had collected a rich store of data about the performance of each of the nation's 5,000 dialysis facilities. Officials had purposely kept nearly all this information from patients on grounds that it was too complex for them to understand — and because providers said it would cast them in a negative light. After pursuing this data for more than 27 months through reporting and Freedom of Information Act requests, I succeeded, late in 2010, in persuading the government to release it. The data was posted in searchable form on ProPublica's Web site, where thousands of patients have accessed it.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I obtained a previously undisclosed government database showing outcomes for every dialysis clinic in the country. Using FOI and public records requests, I also collected eight years of inspections records for 1,500
dialysis clinics in six states, creating a database that tracked and quantified unsanitary and unsafe conditions, prescription errors, infection control breaches, and serious patient safety lapses. I also obtained unpublished CMS data on survey frequency and causes of death. More than 100 FOI and state public records requests were needed for this investigation.
5. Explain types of human sources used.
I interviewed more than 100 patients, advocates, doctors, academics, industry leaders and regulators, visited centers to observe treatments, and traveled to Italy to study a better model.
6. Results (if any).
Our publication of the dialysis clinic performance data on ProPublica's Web site instantly ushered in a new era of accountability for dialysis clinics nationwide. The data was posted in searchable form on ProPublica's Web site, where thousands of patients have accessed it. The data show that performance disparities among clinics can be vast. In more than 200 counties, the gap between facilities with the best and worst patient survival, adjusted for case-mix differences, is greater than 50 percent. This is information no patient should be denied. In the wake of Fields' investigation, Sen. Charles Grassley, R-Iowa — perhaps Washington's most vocal watchdog over health care — has demanded answers from the U.S. Centers for Medicare & Medicaid Services about clinic conditions and the lack of effective oversight. The stories also have had a galvanizing effect in the dialysis world and beyond, unleashing a cascade of reactions, blogging and related articles in the national and local media and trade press.
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
We have not run any corrections or clarifications on these reports.
8. Advice to other journalists planning a similar story or project.
Find multiple ways to try to get at the same information. I requested this clinic outcome data under the Freedom of Information Act, kicking off what would become a more than two-year battle. About half way in, CMS declined my request, saying it did not have "possession, custody or control" of the material. I responded by requesting the documents from health officials in all 50 states as well as more than a dozen regional contractors that coordinate data-collection and quality improvement efforts related to dialysis for CMS. When many responded that the data belonged to CMS, I presented this evidence to the agency, which was forced to reconsider its decision.