Craig MacGregor feels betrayed - by his doctors, by the health-care system and, devastatingly, by his own fingers. For much of the last 40 years, he played bass for Foghat, the classic rock band best known for the hit "Slow Ride." Now, his fingertips have grown bulbous - "clubbed," doctors call it, a side effect of chemotherapy to treat his advanced lung cancer. He can barely play music at all anymore.
"Overnight, it's gone," he says. "That's a hard thing to accept."
Even harder: Though he didn't learn of his cancer until last year, it actually was first detected four years ago during a CAT scan to check for broken ribs after a fall.
Back then, it was a nodule just 10 millimeters across, noted in a radiology report, but not disclosed to him. He still wants to know why.
By the time MacGregor, now 66, learned he had cancer, the tumor had grown more than 60 times larger, was inoperable, and had spread to his brain.
MacGregor - the second-most-famous musician from Wyomissing, Pa., after Taylor Swift - played his final show last August, a double bill with Deep Purple before 8,000 fans in California. Now, his only travel is the hour-long journey to Fox Chase Cancer Center in Philadelphia for chemotherapy and CyberKnife surgery, and, now, immunotherapy.
His odyssey comes at a time when the health-care community is reckoning the full impact of medical error: In May, an analysis by Johns Hopkins University School of Medicine identified it as the third-leading cause of death in the nation, killing 251,000 people annually. And last fall, the National Academy of Sciences' Institute of Medicine issued an influential report on diagnostic errors, recommending steps including ensuring patients direct access to all test results.
MacGregor says if his test results had been mailed to him, he would have gotten care earlier.
Bucks County state Rep. Marguerite Quinn has tried for years to prevent such lapses. She has introduced the Patient Test Results Information Act in four legislative terms since 2008. The last two versions passed out of the state House and landed in the Senate Public Health and Welfare Committee, where they languished.
MacGregor is hoping his story can advance the cause. But doctors' organizations have protested, citing logistical and financial barriers and warning that test results might cause patients undue alarm.
Still, the legislation could answer a long-standing problem, according to David Newman-Toker, a neurologist and an expert on diagnostic error at Johns Hopkins University School of Medicine: It's estimated that 12 million Americans are affected by diagnostic errors each year - more than any other type of medical error. About one-third of those are linked to serious harm, including disability or death. Perhaps 10 percent of all diagnostic errors, he said, are communication failures.
"Patients deserve access to their information, whether physicians like it or not," he said. "This is a perfectly reasonable policy solution to a problem that the medical community has been slow to solve."
An ultrasound report
Bernie McLafferty, a lawyer from Wyndmoor, has been making that case for a decade now.
His lodestar is the memory of his wife, Florence, who died of endometrial cancer in 2005. Though the cancer was observed in a 2002 ultrasound, he said, Florence didn't learn of it until 2004, during an emergency hysterectomy. By then, the cancer was inoperable. She was 65, and left behind five children and 10 grandchildren.
Discovering the ultrasound report in his wife's medical records, McLafferty was stunned.
"I said, 'This can't be true. I can't understand this.' " If only she'd known, he said, "my wife would still be alive today. We began to realize this should not have happened, and there has to be a way this can be prevented."
First, he sought federal legislation. Then he turned to Quinn, a Doylestown resident and a friend of the family's.
To Quinn, the idea of sending test results to patients as well as their doctors was common sense - a fail-safe that could protect both patients and doctors.
But the Pennsylvania Medical Society, in a 2014 letter to lawmakers, warned that patients might not understand test results that are sent to them directly, rather than explained by their physician.
"The resulting misunderstandings will almost certainly increase patient anxiety," the letter read. The society's position has not changed, spokesman Chuck Moran said.
Quinn said she has incorporated the various critiques into her bill: An early version required that all test results be sent to patients; now it's only "significantly abnormal" ones. She added electronic communication options. She built in a seven-day delay, to reduce the risk that patients would see results before their doctors did.
But the Pennsylvania Radiological Society, in particular, is opposed. It argues that the term "significant abnormality" is subjective, and that administrative costs could be substantial.
And, society spokesman John Kline said, "Radiological reports are scientific. It's a lot of scientific-type language. That doesn't mean people are stupid or anything like that. Our physicians' concern is it could cause unnecessary alarm."
Quinn has heard this argument for years now.
"My response to that," she said, "is I've never heard of anyone being scared to death."
Craig MacGregor's wife, Lisa, 52, came across the bill and contacted Quinn. She started a Change.org petition that quickly attracted more than 70,000 signers.
Quinn isn't optimistic that it will make a difference.
"As legislators, we get petitions on many subjects. I think that what would make this move is an understanding that these errors can happen, and the intention is not to burden our physicians' offices. It's the opposite: to put an extra set of eyes on these piles of paperwork and create a safety net."
Radiologists, though, say the bill would force them to short-circuit what should be a conversation between primary-care doctor and patient.
"That's how the system is supposed to work," Kline said. "If a mistake is made or something is missed, whatever systems are in place right now, including the legal system, is there to address that."
In April, the MacGregors sued Craig's doctors and Reading Health System. A representative for the hospital declined to comment. MacGregor's primary-care doctor did not respond to a request for comment.
The MacGregors want accountability, and an explanation as to why they weren't told for three years about the two-page radiology report from 2012, advising "to further evaluate, to exclude the possibility of a primary lung neoplasm" - that is, a tumor. They learned of it when a rheumatologist MacGregor was seeing for knee pain in 2015 noticed the chest scan in MacGregor's records and asked whether he'd ever followed up on it.
MacGregor went for another scan and learned how far that small tumor had progressed.
"You get mad and you get scared and you realize that your life is going to change drastically, to somewhere that you never thought it would be," he said.
Newman-Toker said what MacGregor describes sounds like a textbook scenario.
Such a miscommunication may not happen often, he said, "but the time when it matters most is when the results relate to some kind of potential cancer diagnosis."
And, he said, it's those very scenarios that the legislation would help avoid.
"This will at least close the loop for some patients who would otherwise have only heard about the results after it was too late," he said.
And, it's where medicine is going anyway: A federal rule in 2014 mandated patient access to test results.
"It's part of a broader movement - what's been called affectionately by some the gimme-my-damn-data movement," Newman-Toker said.
Tejal Gandhi, a physician and chief executive of the National Patient Safety Foundation, said a growing number of patients already have access to all their test results through online patient portals.
"To me, that's the best practice, to put all those results on the portal," she said. "There were concerns originally: If something is abnormal, what if the patient sees it before the doctor? Will it cause undue stress? But, really, those concerns haven't panned out."
Gandhi said the solution may ultimately lie in electronic medical records. Some health systems, such as Kaiser Permanente, are using data mining to find abnormal results that don't have the right follow-up, she said.
For MacGregor, the problem is too urgent to wait.
Seated in his living room - which is standard suburbia except for the gold and platinum records lining one wall - he described how his world has shrunk. Foghat has a new album out; MacGregor played on it, but won't tour. Instead, he cooks, watches the Food Network, gardens and holds out hope. Chemotherapy failed; he's on third-line treatment.
"The treatment has been palliative," Lisa MacGregor said. The five-year survival rate for stage IV non-small cell lung cancer is about 4 percent.
"There are exceptions, and we're just holding out for the exception."