By Nate Chinen, February 21, 2008, The New York Times – Not quite a month ago the alto saxophonist Andrew D’Angelo had a major seizure while driving his elderly landlady to a store in Brooklyn. “I was convulsing all over the place,” he later wrote on his blog, “grabbing onto the steering wheel violently, biting my tongue and basically acting crazy.”
Fortunately, the driver behind him recognized what was happening, and after quite a bit more drama — in the ambulance, Mr. D’Angelo apparently tore through the straps of his gurney and tried to strangle an emergency medical technician — he underwent testing that revealed a large tumor on his brain.
Within days he was scheduled for surgery and had started writing about the experience at andrewdangelo.com. He was clear about the fact that he had no health insurance.
The health of jazz, as a topic of conversation, has long inspired a lot of hand wringing among sympathetic parties. When the focus turns toward the health of jazz musicians, the discussion assumes a different, less abstract character: solicitous and supportive. Most people who play jazz for a living are accustomed to self-reliance. When that system fails, they lean on one another.
“Since I’ve been on the scene, there have been benefits for musicians that were in need, unfortunately, because so many of us are,” the guitarist John Scofield said in the rear stairwell of the Village Vanguard on Monday night. Along with the tenor saxophonist Joe Lovano and the Vanguard Jazz Orchestra, he was playing a benefit for the bassist Dennis Irwin, who has recently been struggling with a spinal tumor.
“I’m lucky enough that I can afford health insurance,” Mr. Scofield continued, “but a lot of people can’t. On a jazz musician income they’re getting by from gig to gig, keeping the roof over their heads and feeding a family, and insurance doesn’t happen for them.”
Mr. Irwin, the regular bassist with the Vanguard Jazz Orchestra and a seasoned sideman who has logged extensive time with Mr. Scofield and Mr. Lovano, is another uninsured musician.
The sudden struggles of Mr. Irwin, 56, and Mr. D’Angelo, 41 — musicians equally beloved in different sectors of the New York jazz grid — have abruptly brought the issue of health care to the foreground within jazz circles. Their stories have resonated with musicians, who tend to absorb news of this sort with a tribal concern: jazz is a collaborative art, after all, even if its artists are the ultimate individualists. It may seem negligent that so many jazz musicians lack basic health-care coverage, but monthly fees through an organization like the Freelancers Union easily run to several hundred dollars, and these days many gigs in New York literally involve a tip jar.
The Vanguard sets were a great success, financially as well as musically (it was Mr. Scofield’s first time performing with the orchestra, and he nailed it). There will be another, bigger chance to support Mr. Irwin on March 10, when Mr. Scofield and Mr. Lovano spearhead an A-list benefit concert in partnership with Wynton Marsalis and Jazz at Lincoln Center. Proceeds will go to the Jazz Foundation of America, a nonprofit organization that provides aid to jazz and blues musicians.
Mr. Irwin, speaking this week from his Manhattan home, said he had just completed radiation treatments. His ordeal began in December with a mysterious back pain. The Jazz Foundation referred him to the Dizzy Gillespie Cancer Institute and Memorial Fund at Englewood Hospital and Medical Center in New Jersey, which regularly provides free treatment to jazz musicians. (Dr. Frank Forte, the institute’s director and a jazz guitarist, treated Gillespie there during the final months of his battle with pancreatic cancer in 1993.)
The Jazz Foundation does considerably more than steer musicians toward services. Its mission also involves protecting musicians from eviction, malnutrition and other misfortunes.
“We get 60 cases a week like this, each having its own urgency and desperation,” Wendy Oxenhorn, the executive director, said. Referring to Mr. Irwin, she added, “I’ve never seen an outpouring of so much for one musician.”
If that’s true, Mr. D’Angelo runs a close second. “I knew that I was loved,” he said this week, “and I knew that this musical community was close. But I had no idea the compassion ran this deep, and I mean that from the bottom of my heart.”
Mr. D’Angelo is a key figure in Brooklyn’s underground jazz scene, and part of a peer group that includes the guitarist Kurt Rosenwinkel, the drummer Jim Black and the saxophonist and clarinetist Chris Speed. He has a strong new album, “Skadra Degis,” on Mr. Speed’s label, Skirl, with Mr. Black and the bassist Trevor Dunn. Its release party had long been scheduled to take place Friday at the Tea Lounge in Park Slope.
The gig is still on, but now it will be one of more than a dozen benefits for Mr. D’Angelo, spread across the United States and Europe. Mr. Black, Mr. Speed and Mr. Dunn will perform, as will the multireedist Oscar Noriega and the drummer Matt Wilson, two more of Mr. D’Angelo’s close compatriots. A separate benefit is scheduled for next Thursday at Barbès, also in Park Slope.
Mr. D’Angelo has received financial support from both the Jazz Foundation and the MusiCares Foundation, a program of the National Academy of Recording Arts and Sciences. His operation was a success in the sense that most of the tumor was removed, with no adverse effects. But further analysis revealed that he has an especially serious form of brain cancer.
“The doctor said that without treatment, I will live for five years,” he wrote last Friday, after receiving the news. “Seems dismal and I’m unwilling to accept it.” He is likely to begin radiation treatment shortly, having ruled out further surgery.
Apart from the dramatic nature of their stories, Mr. Irwin and Mr. D’Angelo are sadly not exceptions. A few years ago, for instance, the tenor saxophonist Michael Blake had two operations for a ruptured appendix. Having no insurance, he chose Bellevue Hospital Center for its sliding-scale fee; he also received assistance from MusiCares. He still has no insurance, though he is obviously aware of the risks. (He just spent the weekend at Bellevue watching over Scott Harding, a prolific record producer and engineer who was critically injured in a car accident last week. Mr. Harding does not have insurance either.)
The situation is the same for Mr. Speed, who has spent a lot of time visiting Mr. D’Angelo in hospitals lately. “A lot of my friends, myself included, don’t have insurance, which seems really idiotic, especially now,” he said. “But it’s also very expensive to get coverage.”
It should be noted, too, that even musicians with health coverage encounter serious financial needs; this is one of the major areas of concern for the Jazz Foundation. The costs associated with an illness can go well beyond the literal costs of treatment, because a musician who is not working usually translates to a musician without an income.
Last October the pianist George Cables, who does have private health insurance, had simultaneous transplant operations, receiving a new liver and kidney. While the procedures were covered, he has not been able to earn a living during his recovery. So he was fortunate to have two all-star tributes presented in his honor recently, in San Francisco and New York. He received about $12,000 from each, he said.
But the money wasn’t the only benefit, so to speak. “One of the best things for me was how people came together, and expressed their concern, and expressed their support by coming and playing,” he said. “That was better than anything.”
Benefits for Andrew D’Angelo: Friday at the Tea Lounge, 837 Union Street, near Sixth Avenue, Park Slope, Brooklyn, (718) 789-2762, tealoungeny.com; Feb. 28 at Barbès, 376 Ninth Street, at Sixth Avenue, Park Slope, Brooklyn, (718) 965-9177, barbesbrooklyn.com. Benefit for Dennis Irwin: March 10 at the Allen Room, Frederick P. Rose Hall, Jazz at Lincoln Center, 60th Street and Broadway, (212) 721-6500, jalc.org.
By Sarah Lyall, February 21, 2008, The New York Times, LONDON — Created 60 years ago as a cornerstone of the British welfare state, the National Health Service is devoted to the principle of free medical care for everyone. But recently it has been wrestling with a problem its founders never anticipated: how to handle patients with complex illnesses who want to pay for parts of their treatment while receiving the rest free from the health service.
Although the government is reluctant to discuss the issue, hopscotching back and forth between private and public care has long been standard here for those who can afford it. But a few recent cases have exposed fundamental contradictions between policy and practice in the system, and tested its founding philosophy to its very limits.
One such case was Debbie Hirst’s. Her breast cancer had metastasized, and the health service would not provide her with Avastin, a drug that is widely used in the United States and Europe to keep such cancers at bay. So, with her oncologist’s support, she decided last year to try to pay the $120,000 cost herself, while continuing with the rest of her publicly financed treatment.
By December, she had raised $20,000 and was preparing to sell her house to raise more. But then the government, which had tacitly allowed such arrangements before, put its foot down. Mrs. Hirst heard the news from her doctor.
“He looked at me and said: ‘I’m so sorry, Debbie. I’ve had my wrists slapped from the people upstairs, and I can no longer offer you that service,’ ” Mrs. Hirst said in an interview.
“I said, ‘Where does that leave me?’ He said, ‘If you pay for Avastin, you’ll have to pay for everything’ ” — in other words, for all her cancer treatment, far more than she could afford.
Officials said that allowing Mrs. Hirst and others like her to pay for extra drugs to supplement government care would violate the philosophy of the health service by giving richer patients an unfair advantage over poorer ones.
Patients “cannot, in one episode of treatment, be treated on the N.H.S. and then allowed, as part of the same episode and the same treatment, to pay money for more drugs,” the health secretary, Alan Johnson, told Parliament.
“That way lies the end of the founding principles of the N.H.S.,” Mr. Johnson said.
But Mrs. Hirst, 57, whose cancer was diagnosed in 1999, went to the news media, and so did other patients in similar situations. And it became clear that theirs were not isolated cases.
In fact, patients, doctors and officials across the health care system widely acknowledge that patients suffering from every imaginable complaint regularly pay for some parts of their treatment while receiving the rest free.
“Of course it’s going on in the N.H.S. all the time, but a lot of it is hidden — it’s not explicit,” said Dr. Paul Charlson, a general practitioner in Yorkshire and a member of Doctors for Reform, a group that is highly critical of the health service. Last year, he was a co-author of a paper laying out examples of how patients with the initiative and the money dip in and out of the system, in effect buying upgrades to their basic free medical care.
“People swap from public to private sector all the time, and they’re topping up for virtually everything,” Dr. Charlson said in an interview. For instance, he said, a patient put on a five-month waiting list to see an orthopedic surgeon may pay $250 for a private consultation, and then switch back to the health service for the actual operation from the same doctor.
“Or they’ll buy an M.R.I. scan because the wait is so long, and then take the results back to the N.H.S.,” Dr. Charlson said.
In his paper, he also wrote about a 46-year-old woman with breast cancer who paid $250 for a second opinion when the health service refused to provide her with one; an elderly man who spent thousands of dollars on a new hearing aid instead of enduring a yearlong wait on the health service; and a 29-year-old woman who, with her doctor’s blessing, bought a three-month supply of Tarceva, a drug to treat pancreatic cancer, for more than $6,000 on the Internet because she could not get it through the N.H.S.
Asked why these were different from cases like Mrs. Hirst’s, a spokeswoman for the health service said no officials were available to comment.
In any case, the rules about private co-payments, as they are called, in cancer care are contradictory and hard to understand, said Nigel Edwards, the director of policy for the N.H.S. Confederation, which represents hospitals and other health care providers. “I’ve had conflicting advice from different lawyers,” he said, “but it does seem like a violation of natural justice to say that either you don’t get the drug you want, or you have to pay for all your treatment.”
Karol Sikora, a professor of cancer medicine at the Imperial College School of Medicine and one of Dr. Charlson’s co-authors, said that co-payments were particularly prevalent in cancer care. Armed with information from the Internet and patients’ networks, cancer patients are increasingly likely to demand, and pay for, cutting-edge drugs that the health service considers too expensive to be cost-effective.
“You have a population that is informed and consumerist about how it behaves about health care information, and an N.H.S. that can no longer afford to pay for everything for everybody,” he said.
Professor Sikora said oncologists were adept at circumventing the system by, for example, referring patients to other doctors who can provide the private medication separately. As wrenching as it can be to administer more sophisticated drugs to some patients than to others, he said, “if you’re a doctor working in the system, you should let your patients have the treatment they want, if they can afford to pay for it.”
In any case, he said, the health service is riddled with inequities. Some drugs are available in some parts of the country but not in others. Waiting lists for treatment vary wildly from place to place. Some regions spend $280 per capita on cancer care, Professor Sikora said, while others spend just $90.
In Mrs. Hirst’s case, the confusion was compounded by the fact that three other patients at her hospital were already doing what she had been forbidden to do — buying extra drugs to supplement their cancer care. The arrangements had “evolved without anyone questioning whether it was right or wrong,” said Laura Mason, a hospital spokeswoman. Because their treatment began before the Health Department explicitly condemned the practice, they have been allowed to continue.
The rules are confusing. “It’s quite a fine line,” Ms. Mason said. “You can’t have a course of N.H.S. and private treatment at the same time on the same appointment — for instance, if a particular drug has to be administered alongside another drug which is N.H.S.-funded.” But, she said, the health service rules seem to allow patients to receive the drugs during separate hospital visits — the N.H.S. drugs during an N.H.S. appointment, the extra drugs during a private appointment.
One of Mrs. Hirst’s troubles came, it seems, because the Avastin she proposed to pay for would have had to be administered at the same time as the drug Taxol, which she was receiving free on the health service. Because of that, she could not schedule separate appointments.
But in a final irony, Mrs. Hirst was told early this month that her cancer had spread and that her condition had deteriorated so much that she could have the Avastin after all — paid for by the health service. In other words, a system that forbade her to buy the medicine earlier was now saying that she was so sick she could have it at public expense.
Mrs. Hirst is pleased, but up to a point. Avastin is not a cure, but a way to extend her life, perhaps only by several months, and she has missed valuable time. “It may be too bloody late,” she said.
“I’m a person who left school at 15 and I’ve worked all my life and I’ve paid into the system, and I’m not going to live long enough to get my old-age pension from this government,” she added.
She also knows that the drug can have grave side effects. “I have campaigned for this drug, and if it goes wrong and kills me, c’est la vie,” she said. But, she said, speaking of the government, “If the drug doesn’t have a fair chance because the cancer has advanced so much, then they should be raked over the coals for it.”