Contest Entries

A Desperate Scramble: Medicare Limits Drugs that Kidney Patients Need

Entrants: John Gonzales, Lauren M. Whaley, Tom Kisken

Affiliation: CHCF Center for Health Reporting and VenĀ­tura County Star

Health Policy

Year: 2011

Place: Honorable Mention

Provide a brief synopsis of the story or stories, including any significant findings.

Judges’ comments: A powerful and jarring account of health care policy gone bad. It's worth noting that a small paper, the Ventura County Star, went after the largest private employer in the county, Amgen, which is also the nation's second-biggest drug lobbyist in Congress. The first-hand accounts of kidney patients are riveting. This clear and persuasive work evokes outrage over the needless suffering and death of kidney transplant patients who lose government coverage for their expensive and essential anti-rejection drugs.

Provide names of other  journalists involved.

Stephen Osman, Photojournalist, Ventura County Star

List date(s) this work was published or aired.

July 23-24, 2012

See this entry.

Provide a brief synopsis of the story or stories, including any significant findings.

This project examined the seeming contradictions in Medicare's kidney transplant program and its effects on patients' lives. More than 144,000 kidney transplant patients nationally have seen the Medicare benefit for drugs they will need throughout their lifetimes expire. The drugs, known as immunosuppressives, or anti-rejection medication, allow the body to accept the transplanted organ -- at a cost of $17,000 year. But Medicare currently pays for the drugs for only 36 months, leaving these transplant patients in a desperate scramble. Meanwhile, policymakers have chosen to provide kidney patients a lifetime of dialysis treatments, which funnels them to part-time lives in a dialysis chair and leaves taxpayers with a $71,000 annual Medicare tab for each patient -- four times the expense of the anti-rejection drugs. Reversing the policy has been vigorously opposed by the influential dialysis industry, which counts California powerhouse Amgen as a key player and campaign contributor. Adding to the anguish of patients, and to the public tab, is the fact that Medicare will cover the $100,000 average expense for kidney transplants, and 80 percent of the medication cost, only to let the medication benefits expire. When the kidney fails for lack of anti-rejection medicine, it leads to another costly, years-long dialysis stint, and a new transplant ringing up another $100,000. Two of the precious, donated organs are expended instead of one.

Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?

We combed through U.S. health agency documents, going back some 30 years, to trace the political/medical justification for denying transplant patients the medications needed to keep their organs functioning. We found the policy was an historic anomaly, traced back to when few kidney transplants survived past the first few years. This drove our personal narratives and allowed us to place the plight of kidney patients in the context of questionable policy. We also traced the corporate influence on this policy by combing through state and federal campaign finance documents of Amgen, a California drug maker that had a vested interest in the status quo of transplant policy. We also examined Amgen's financial shareholder reports to document what role its dialysis drug, Epogen, played in the financial success of the company. FOI records were not required.

Explain types of human sources used.

We interviewed dozens of advanced kidney disease patients, some as they sat in the dialysis chair. We also spent considerable time with kidney transplant patients who were about to run out of their anti-rejection medication. Among dialysis patients we profiled separately was one woman, Sheryl Glatt, who later died from complications of kidney disease. We interviewed her on her hospital bed and wrote a first hand, intimate account of her consent to amputation related to neuropathy and kidney disease. Of course, we also interviewed doctors, government officials, representatives of advocacy groups, and spokespersons for the pharmaceutical company, Amgen.

Results (if any).

A week after the series ran, U.S. Senators Dick Durbin (D-IL), Thad Cochran (R-MS), and Scott Brown (R-MA) introduced bipartisan legislation to improve the quality of life for people with kidney disease. The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would assist thousands of Americans under the age of 65 who are being cut off from Medicare after 36 months by extending coverage of immunosuppressive drugs for kidney transplant recipients. Also cosponsoring the legislation were U.S. Senators Daniel Inouye (D-HI), Chuck Schumer (D-NY), Carl Levin (D-MI) and Ben Cardin (D-MD). We had been in touch with the legislation's lead sponsor, Sen. Durbin's office, throughout the reporting effort. His staff read the series and said it served as a reminder of the importance of reintroducing the legislation.

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.

No one has come forward to challenge the accuracy of the report, and there were no calls for corrections or clarifications.

Advice to other journalists planning a similar story or project.

Put the people directly affected by a policy at the forefront. Elucidate policy through human stories of those impacted by it. We learned about the existence of this contradictory policy from a man sitting in a dialysis chair, afraid that he would not be able to pay for the medications.