On this scary Halloween, it's comforting to see that the U.S. House of Representatives is including a public option in its healthcare reform bill.
The House bill, if it passes, could save the lives of many very ill people – like Fred Holliday. With insurance coverage for a physical exam, Fred might have received prompt detection and treatment.
Dr. Rahul Parikh describes what had happened instead, as told to him by Fred's widow, Regina Holliday:
Fred Holliday developed the early symptoms of his disease-fatigue, weight loss and occasional blood in his urine - before he had health insurance. In late 2008, his insurance kicked in after he got a job at American University teaching film studies. Last January, he developed low back pain. He went to see his doctor multiple times. Each time, she prescribed pain medication, but his pain worsened. Regina wondered: if Fred just had muscle pain, then why the night sweats? Why the blood tinged urine? Why didn't his clothes fit him anymore? Still, Fred's doctor didn't reconsider her diagnosis and treatment.
His pain worsened. In March, Regina demanded more. Fred's doctor ordered an MRI of his back. Three days later, they got a call telling them that he had "shadowing over his kidneys." What that meant wasn't entirely clear, but the next thing Fred and Regina knew, they were in the office of a Maryland oncologist, who admitted them to a hospital in Silver Spring for further tests.
On Friday, March 27 around 11 am, Regina was at work when Fred called. He was crying. "I think the doctor just told me I have cancer," he managed to tell her.
What exactly did the doctor say? Fred remembered being told that he had a growth on his kidneys. Regina rushed into see the doctor, but he had left town for the weekend. They had to wait until the next day before another doctor (not an oncologist) tried to clarify his diagnosis: it looked like he had stage IV metastatic renal cell carcinoma. That jumble of words didn't make any sense. Regina went onto the Internet. Wikipedia turned out to be more helpful than Fred's doctors.
When their oncologist returned, he was curt and often distracted by his cell phone. He didn't like Regina's detailed questions, telling Fred that, "If Miss type-A personality wants me to answer her questions, she can come to my office hours."
In retrospect, Regina believes that if Fred's doctor had been clear about his prognosis from the beginning, he may have made the decision to stop fighting sooner. Instead, he informed him of how he could fight: surgeries, radiation, and chemotherapy. So he decided he needed more advanced care than what Holy Cross could provide.
Patient transfers between hospitals are normally the responsibility of doctors who work there. The hospital's doctors, however, told her they had not been able to find another center willing to accept him. So Regina contacted her own internist, who sat on the board of directors at a hospital in Bethesda. After hearing Fred's story, he pulled strings and arranged a transfer.
The Hollidays arrived at there four weeks after Fred's diagnosis. The first thing they learned was that he needed surgery to repair a broken hip - which happened after an orderly at the first hospital bumped him into a wall while he was moving Fred on a gurney. Fred had been complaining of severe hip pain for two weeks, but nobody there had followed up on it. All it would have taken was an x-ray.
After surgery, his new oncologist ordered a chemotherapy drug called Sutent. While his health insurer approved the drug, Fred's doctor told Regina that the pharmacy refused to order it. At $40,000 for a 28-day supply, it was too expensive. "Sometimes this happens," Fred's doctor told her. So Regina had the drug mailed home, picked it up, tucked it safely into a fanny pack, and dispensed a dose to her husband each day.
Fred's cancer advanced. He still couldn't walk. He had become incontinent. The doctors decided to transfer him to a rehabilitation center with the goal of getting him to walk again. Once he was there, Regina’s duties as his caregiver intensified. She learned where the center's storage closets were so she could collect fresh sheets and change them herself. She emptied his trash, and changed and disposed of his bedpans.
While he was in the hospital, Fred required blood transfusions every 10-14 days. Regina knew when he needed them because he would begin to get very tired, eat, move, and talk less. One afternoon, this is just what happened. At the hospital, it was easy to ask the nurse to get a blood test to know just how low his counts were. In the rehab center, they only did blood tests once every morning, no exceptions. So Fred suffered until morning came and his test confirmed what he and Regina knew the day before.
Fred would had to be re-hospitalized. Fred continued to deteriorate. It quickly became a question of how much longer to fight. On May 19th, he was moved to hospice care to get his pain under control and on June 11th, he went home. On June 17th, less than three months after he was diagnosed with cancer, Fred Holliday died at home. Ironically, this was the same day that the United States Senate began debating health care reform.
Advice: Call your congressman and ask them to support health insurance reform with a strong public option. Commercial insurers might prefer not to insure someone like Fred - or like you.
Read another story about the lack of health insurance. Thanks to Dr. Rahul Parikh for the source blogpost, and e-patient Dave Bronkart.
