Set for full rollout on October 1, the much delayed 10th revision of the 

International Statistical Classification of Diseases and Related Health Problems

 is probably the biggest revision to medical coding and billing since computerized medical coding and billing practices began decades ago.

And like the rest of the medical community, oncologists and their support staffs and services face a lot of learning and uncertainty as they prepare to make the transition. Their biggest and most pressing question: How will I get paid under the new system? 

Doug Moeller, MD, a medical director at McKesson Health Solutions, has been working with most major health plans providing software for claims auditing, medical practices, and episodic care. Preparing for 

“Learn first the codes you are most likely to use,” Dr. Moeller said during a recent interview. “What are the codes that you use most? It is probably, I am going to tell you, about 400 to 600 codes for an average oncology practice, for their daily business.”

For a first step to surviving the transition from 

, he advises that oncologists and their practice support staff compile a list of the codes they most often use under 

. Then they should find the equivalent codes within 

, he said, and make sure that everyone who is part of a given practices’ billing procedures, from doctors to billing managers, understands those codes and where they fit within the daily grind of the practice.

That list “might not be as precise as I will need but it will get the job done. It will make sure that I get my billing out,” Moeller said.

 has general diagnosis codes that physicians can apply to the earliest billings under the new system. Later billings, he said, can grow in detail and complexity as the physicians and the insurers who handle the physicians’ claims grow more comfortable with the new system.

Code selection should be basic or conservative initially, he said. Codes that seem out of place or exotic to insurance companies will likely raise red flags that will delay the billing process— sometimes for months.

Oncologists can check with their medical associations or regional colleagues for help finding the 

 equivalents to their present basic and advanced codes. Once the “cheat sheet” is initially compiled with all the codes used most frequently, the list should grow by a few hundred a month until it is all-encompassing, Moeller said.

Moeller and Dawn Cook, chief practice officer at Penobscot Community Health Care, a nonprofit health center that has 19 outlets throughout Maine, recommend that practices identify individuals already well versed in coding to specifically handle the 

Cook advised that practices have one or two staffers trained not just in 

 through the various indoctrination programs offered by medical associations, but also in project management, defined by the Project Management Institute as a temporary group activity designed to produce a unique product, service or result.

Small practices comprising of 1 to 6 doctors might not have the funding to hire more staff to tackle the

 transition, Moeller and Cook said, but designating one or two people already within a practice and familiar with coding to the transition would be wise. Hiring more staff “isn’t something small practices could bite off,” Cook said, “but they can and should have their managers and lead billers take training and tips about project management.” Project managers “take the essence of the idea and run with it,” tailoring small portions of generalized projects like the 

 transition to available staff and ensuring that the individual efforts all fit together comprehensively, Cook said.

“As a profession, health care professionals have not been savvy as project managers, but we have the capacity to do it and now it is a buzzword with many associations that are offering training in this area,” Cook said.

The American Health Information Management Association and the American Association of Professional Coders are 2 of the many professional organizations offering 

Oncology practitioners will likely need to move fast if they want to keep their billing current when the changeover to 

begins in October 2014, according to the Workgroup for Electronic Data Interchange (WEDI). That’s a coalition that the US Secretary of Health and Human Services formed in 1991, consisting of doctors, hospitals, health plans, laboratories, pharmacies, clearinghouses, vendors, and government regulators to enhance the quality of care via health information technology.

A December survey by WEDI of 353 respondents— 196 providers, 59 vendors and 98 health plans&mdash;found that 80% of all health care providers said they will not finish retooling their businesses and testing their 

More than 20% of the vendors who responded indicated that they were no more than halfway finished creating programs and other products that would support 

. Forty percent said they would not have products available to customers until 2014 and 40% of the health plan operators who responded had not fully completed their assessments of ICD-10’s impact, the survey states. All segments of the health care industry have progressed since the last WEDI survey in February 2013, but not enough to eradicate concerns, WEDI Chairman Jim Daleyn said in a statement.

“Unless all segments move quickly forward with their implementation efforts, there will be significant disruption (of health care practices] on October 1, 2014,” Daleyn said.

Moeller said he believes that the larger and more well funded practices will be wise to invest some resources in someone to lead them through this— an outside consultant or an additional worker or two.

The least prepared practices are probably the smaller businesses—less than 4 to 6 six doctors, who don’t have a dedicated practice manager. They often feel they don’t have resources to dedicate to system changes until it’s absolutely necessary. However, health plans who depend on diagnosis coding for paying claims correctly have been working on this diligently,” said Moeller.

Located on the Web at WEDI.org, the Workgroup posts monthly data about the ICD-10 transition’s progress, although none of it caters specifically to oncologists. A to-do list for practices that the group offered in January echoed many of the suggestions made by Dawn Cook and Doug Moeller, MD:

			Determine if there are any clinical documentation implications (eg, laterality or use of unspecified codes) and training that may be needed.

			Discuss ICD-10 with all your vendors (eg, billing companies, clearinghouses, etc) to determine their readiness and how it impacts your business operations.Determine what your vendor can and cannot do for you.

			Identify trading partners, health plans, public reporting requirements, etc, and potential impacts to these interactions.

			Identify any budget impacts. Do you need to purchase software upgrades? How much will training cost?

			Compile a list of all the things you will need to do (action list) or verify (test).

			Form a project team; assign responsibility with timelines for completion (compliance plan).

“We are very alert to the opportunity for

 to be a lot more precise and a lot more confusing, so the larger entities have a lot more to lose, and they get that,” he added. “There is a whole spectrum of readiness. Some people have been really working on this and are very well-prepared. Some others are somewhat prepared and they have some challenges.”

Practices of 6 to 30 oncologists and organizations of 30 or more have the resources to allocate to the coding transition, which perhaps gives them an advantage over smaller practices, but the smaller practices have a counter benefit, Moeller said. The smaller practices’ lack of size leaves them more bureaucratically or managerially nimble than their larger competitors when it comes to change.

“They have a smaller span of engagement,” Moeller explained, meaning that a smaller practice’s lesser numbers of patients, treatments, and bureaucratic steps to coding bills and submitting them leave the practices better able to make the transition.

. A single diagnosis or treatment plan that once occupied a handful of codes now can expand massively as the 15,000 

, a broken wrist is listed as an 814 regardless of which arm it occurs. Under 

, physicians must specify which wrist is broken, plus whether the injury is treated on an initial encounter, subsequent encounter, and they must specify with routine healing, delayed healing, nonunion, or malunion, Moeller said.

More complex treatments require greater detail in coding. Under 

, doctors treating a breast cancer must specify whether the malignant neoplasm is within the right or left breast and center or periphery of that breast, or in both breasts, Moeller said.

The complexity of the new code, and the difficulties in mating it to a practice’s software and billing systems, might mean that industry-wide, it will take “a year to get the new codes working right,” Moeller said.

Depending upon the size of their practices, oncologists should set aside at least 3 months of gap financing to cover their expenses in the 

 transition period — perhaps with a loan or line of credit, Moeller said.

“If you want a comfort zone, you need a safety fund of a minimum of 3 months. I think it may be 6 months before it settles out and gets current,” Moeller said. “You may literally have a window where it takes a while for them to catch up. It could be a year before they catch up.”

Moeller offered 1 last piece of advice: Hang in there. The 

 transition is a big change, but oncologists and their associates aren’t making it alone.

“Hopefully over this first year we will get better at it and if we start general and get more specific as we go, we all learn together, and that’s OK,” Moeller said. “Remember: The diseases don’t change. Business practices are changing.”

Articles

Set for full rollout on October 1, the much delayed 10th revision of the International Statistical Classification of Diseases and Related Health Problems is probably the biggest revision to medical coding and billing since computerized medical coding and billing practices began decades ago.

Oncology Practices Face the Biggest Change in Coding Since the Computer-ICD-10

As millions of Americans grapple with changes in Medicare and other health insurance coverage, thousands of oncologists could find their medical practices threatened by insolvency. In addition, the federal government’s deficit could grow considerably if Congress does not attempt to fix the flawed Medicare physician payment system.

	Oncology professionals from around the country and the American Medical Association (AMA) have been voicing their concerns to Congress for a number of years, stating that the current reimbursement system is forcing clinics across the country to shut their doors, preventing patients from receiving optimal care.

	“These proposed cuts to cancer care are creating the perfect storm,” said Ted Okon, executive director of the Community Oncology Alliance (COA), a group representing hundreds of community oncologists around the country.

	Okon said that the effects of an imperfect reimbursement system are already being felt in a system that is already strained for resources.

	In 1997, Congress established a sustainable growth rate (SGR) formula for reimbursing physicians who treat Medicare patients. The formula was based on healthcare costs and the general economy at the time. Today, if a physician’s expenditures for treating patients exceed the SGR, then reimbursement is cut. Since medical costs have risen at a rate greater than inflation, cuts to the SGR have been proposed for some time.

	While cuts have been averted for the last few years, a 29.5% cut to the SGR is set to take effect on January 1, 2012, unless Congress intervenes before then. The proposed 29.5% cut is “simply unacceptable,” said David Adler, director of government relations for the American Society for Therapeutic Radiology and Oncology (ASTRO), a 10,000-member organization whose membership includes 5000 domestic radiation oncology physicians. “Congress needs to act— and act fast&mdash;to once and for all stop these cuts and fix the sustainable growth rate formula that leads to these cuts.”

	Congress has intervened 12 times since 2002 to prevent cuts to reimbursement provided by the SGR formula. In 2010 alone, 5 separate federal bills were passed to stop a 22% cut, said Cecil B. Wilson, MD, immediate past president of the AMA and an internist based in Winter Park, Florida, who testified on the funding formula before the House Energy and Commerce Committee’s Subcommittee on Health.

	“The formula is flawed and it has not worked right…almost since its inception,” Wilson said. “Physicians are now being paid by Medicare essentially at the same rate they have been paid since 2002. It is becoming increasingly difficult to see Medicare patients because of this.”

	In 2003, the Medicare Modernization Act (MMA) was passed, effectively changing the reimbursement model for cancer drugs. Under the MMA, physicians were reimbursed for the average sales price of the drug rather than the average wholesale price. When the wholesale price reimbursement model was in place, many physicians were overcompensated for drugs, but in turn, these funds were used to offset nonpayment and underpayment of other cancer treatment options.

	Congress was supposed to revise the MMA to account for unreimbursed services, such as treatment planning, but that has yet to happen. According to the COA, many drugs are reimbursed at a rate less than cost.

	The Medicare Payment Advisory Commission (MedPAC), a congressional agency that provides Congress with independent, nonpartisan policy and technical advice on Medicare issues, reported that 1 in 4 new Medicare patients has difficulty finding physicians willing to treat them. In addition, a recent AMA survey found that about 57% of doctors who responded reported being forced to “limit” services to Medicare patients due to a lack of Medicare reimbursement funding.

	Adding urgency to the issue is the fact that Medicare serves more than 46 million beneficiaries, a number that will continue to grow as more baby boomers age. The year-toyear instability of the funding formula situation leaves physicians unable to “reliably plan ahead or fully cover their rising practice costs,” said Mark B. McClellan, MD, PhD, director of the Brookings Institution’s Engelberg Center for Health Care Reform, in his testimony before Congress.

	“The result is frustrating, putting pressure on physicians to do more for patients with less, and growing difficulty for physicians in bearing the cost of all the things Medicare pays for poorly, if at all: coordinating care across the different providers who see beneficiaries, educating patients about how they can stay well or manage their health problems, delivering care in less costly settings, and even spending extra time with them when they need it,” McClellan added.

	AMA’s Wilson said many doctors who treat Medicare patients are already facing brutal decisions: to cut into their own practices’ finances and capabilities or to simply stop seeing Medicare patients. According to a recent AMA Physician Practice Information Survey, 78% of US office-based physicians are in practices of fewer than 9 physicians, with most in solo practice or practices involving 2 to 4 physicians. This leaves little room for the cuts they are increasingly being forced to make.

	The result is frustrating, putting pressure on physicians to do more for patients with less, and growing difficulty for physicians in bearing the cost of all the things Medicare pays for poorly, if at all. ”

	Yet cuts are already happening. In the COA’s Practice Impact Report, which was released earlier this year, the organization reported that at least 199 community oncology practices have shut their doors and another 315 have been absorbed by larger hospitals.

	COA president David Eagle, MD, said that those effects are trickling down to the patients served by these clinics. Eagle said that many clinics are reporting shortages in generic cancer drugs. These drugs are typically dispensed at an oncologist’s office or in a hospital rather than a traditional or retail pharmacy. In 2003, the MMA limited how much the price of a particular generic drug could be raised. Even though generic drugs are substantially cheaper than their brand-name counterparts, when a shortage occurs drug prices rise to encourage multiple manufacturers to meet demand. However, because of the limits on pricing, there is little incentive for drug manufacturers to produce life-saving drugs to help resolve these shortages.

	“This leads to fragmented care,” Eagle said. “A patient is taking Taxol as part of their chemotherapy, but once Taxol is unavailable, the patient has to be switched to some other drug. It’s an unintended consequence of how reimbursement is being done.”

	For years, Congress has failed to permanently fix the SGR formula, and every year that the issue isn’t addressed the problem increases in size and complexity. Wilson estimated that the 10-year cost of a long-term solution to the reimbursement issue has grown from about $48 billion in 2005 to nearly $300 billion today.

	Yet with the Congressional Budget Office (CBO) estimating that the federal government was already $871 billion in the red through the first several months of fiscal year 2011—and running an overall deficit estimated at $13.5 trillion as of September 2010&mdash;spending more money now to prevent a larger and much more costly problem later is an agonizingly difficult thing to sell politically.

	“It’s one of those pay-me-now or pay-melater problems,” Wilson said. “With the Medicare program, the problem will be even greater. The route to improvement, to find a solution to this problem, is a challenge. It is not easy.”

	According to the Centers for Medicare & Medicaid Services, Medicare spending accounts for roughly 3.5% of the US gross domestic product (GDP). If scheduled physician payment reductions continue to be overridden and provider payments continue to grow at current rates, Medicare expenditures could surpass 5% of the GDP by 2030 and hit 5.5% by 2035, according to McClellan. He said this would not only require substantial additional tax revenues but, if the past is any guide, that other key federal priorities will be squeezed down.

	According to Glenn M. Hackbarth, chairman of the MedPAC, Medicare also consumes 18% of all income tax revenue in addition to Medicare’s dedicated payroll tax revenues, premiums, and cost sharing. That leaves those tax revenues unavailable for other national priorities or to reduce the national debt. As a result, the CBO estimates that debt held by the public is expected to be about 77% of GDP within the next decade, a level not seen since World War II.

	On March 10, 2010, a letter stating that the current SGR formula must be remediated was sent to congressional Republican and Democrat leaders. It was signed by more than 130 medical organizations, including the AMA, American Society of Clinical Oncology, American College of Surgeons, Medical Group Management Association, and 51 state medical associations and societies.

	In addition, more than 100 members of ASTRO visited Washington, DC, in March 2011 to personally press congressmen on the need to replace the reimbursement formula with a way to pay physicians fairly. COA held a similar gathering in September to urge Congress to make major overhauls in Medicare reimbursement for oncologists.

	AMA recommended a 5-year period of stable Medicare physician payments that keep pace with the growth in medical practice costs. This coincides with the transition to an array of new payment models developed by policymakers, stakeholders, and experts that would be designed to enhance care coordination, quality, appropriateness, and costs.

	As for the COA, its recommendation follows the oncology patient-centered medical home model. The model, which was developed by Consultants in Medical Oncology & Hematology, PC, in Drexel Hill, Pennsylvania, manages each patient by a physician-led care team. When a patient is diagnosed with cancer, that practice team coordinates all aspects of treatment, meaning that all nononcologic medical issues would also be kept in-house.

	By following this model, members of the COA believe that increased communication between patients and physicians, patient compliance monitoring, standardization of care, increased patient education, and increased accountability would create less of a burden on the healthcare system. The healthcare system would become performance-based, and improved coordination would lower the cost of care.

	“We’re trying to bring a possible solution [to the SGR issue] to Congress,” said Eagle.

			Medicare Payment Advisory Commission. Report to the Congress: Medicare Payment Policy. MedPac’s report to Congress on the Medicare payment policy. March 15, 2011. Available at: 

			McClellan MB. The need to move beyond the sustainable growth rate in Medicare. May 5, 2011. Available at: 

			TreasuryDirect. Historical debt outstanding: annual 2000-2010. Available at: 

As millions of Americans grapple with changes in Medicare and other health insurance coverage, thousands of oncologists could find their medical practices threatened by insolvency.

Physicians Uniting to Battle Flawed Medicare Reimbursement Formula

It was a cloudless January day in Los Angeles, and Ron Rogers was zipping right along.

	Out of bed at 6:30 am, the chief executive officer was in his Century City office at The Rogers Group, his public relations firm, for breakfast by 8 am. It was a Wednesday, so he didn’t have his usual workout, a 2-mile hike through the Santa Monica Mountains followed by weightlifting.

	His schedule was full: a morning of strategy meetings with clients and staff, of planning for fundraisers, and of “talking to my friends in the media”—PR-speak for lobbying&mdash; then lunch at Ivy at the Shore in Santa Monica. After that it was back to the office for a board meeting of the Los Angeles Fire Department Foundation, some desk work, then a plane ride to a northern California horse auction, followed by several more days at his 1200-acre cattle ranch in Colorado, where an untold number of his 200 cows were due to give birth.

	Mention of the ranch launched Rogers into a happy description of how cows give birth at all hours, requiring countless visits to snowy pastures every 3 or 4 hours, and of how he had been recently trying to rope a friend into going to Colorado with him.

	“I want to see if I can work him for 3 or 4 days,” Rogers says. “When I am up there it’s the only time our foreman gets a break. I told [my friend], ‘I have a chore for you that involves a very long glove.’”

	Rogers seems in the prime of his life, a 67-year-old, happily married, highly energetic and successful businessman whose biggest gripe on this particular day was waiting in a doctor’s office for 15 minutes for a treatment. “I never understand,” he says, “why you end up waiting in a doctor’s office. I don’t keep my clients waiting… It’s an old peeve of mine.”

	You’d never know that Rogers has had multiple myeloma for almost 11 years—and that’s just the way he likes it.

	“It’s a minor inconvenience,” Rogers says of the cancer. “There were maybe 2 or 3 times where I didn’t feel good. [Yet] I can still say the whole thing is a minor inconvenience compared to what I have seen other people, friends, parents, go through. I have been very fortunate.”

	Living with a disease that may be terminal within 5 years of diagnosis was for Rogers a slow climb out of a well of fear into what today feels more like an occasional splash of anxiety. A patient of oncologist James Berenson, MD, he is tested monthly at Berenson’s Institute for Myeloma & Bone Cancer Research in West Hollywood and always feels, he says, some nervousness before an exam.

	“There have been times when I have been on some of the chemotherapies that Dr Berenson has brewed up that have knocked me for loop for 2 or 3 months,” Rogers says. “I’ll be tired, leaving the office at 2:30 pm and generally dragging my tail, but those times have been very few. The rest of the time, when he is not trying to do me in, I am pretty active.”

	Exactly why Rogers has done so well is something of a mystery to him and his wife, 65-year-old Los Angeles attorney Lisa Specht. Their reasons are, medically speaking, nonspecific: Rogers’ good physical shape and positive attitude and Berenson’s cocktail of antimyeloma drugs and therapies.

	“Everything he has done for Ron has been right. Everything,” Specht said of Berenson. “Yes, there have been some side effects. Once in awhile Ron gets a side effect that’s really unpleasant, but he doesn’t go into major depression. His idea of major depression is to go read a book by himself. He is not a weeper. He is not having a pity party for himself.”

	Rogers’ stoicism might come from his having had a pretty full and satisfying life. The son of a Hollywood press agent, he has what was later found to be dyslexia and left school in the eleventh grade. Always business- and ranching-minded, and introduced to horses when he was 13, Rogers was buying and selling stallions at age 17. He started his own car parking business at 19.

	A brief stay in the mailroom at his father’s press agency followed. Alfred Bloomingdale, heir apparent of the department store fortune, hired him as a sort of business mechanic. Rogers spent several years guiding many Bloomingdale-bought businesses into the black before returning to his father’s agency, Rogers & Cowan. He worked as a set publicist on television programs such as The Andy Griffith Show, Ron Rogers with wife Lisa Specht and their cat Tigger at their Colorado cattle ranch.Gunsmoke, and Walt Disney’s Wonderful World of Color. Still, Hollywood wasn’t really his thing.

		Ron Rogers with wife Lisa Specht and their cat Tigger at their Colorado cattle ranch.

	“I just didn’t like the lack of ethics and loyalty of many of the people I came in contact with at the time, except for a few people I worked for when I was a kid,” Rogers says.

	Rogers had formed his own agency, then called Rogers & Associates, serving clients such as Dole, Raytheon, and Whole Foods, when multiple myeloma struck. A week passed before he could break the news to his wife. The initial horror lasted months. Then a sort of calm ensued that puzzled him, he says.

	“After about 6 months, I went to see a shrink because I thought, ‘Maybe I am handling this all too well, and maybe it’s not real.’ After a couple of sessions, he told me to get out of his office because I was dealing with it in its proper place,” Rogers says. “I remember thinking, am I doing what I really want to do? You don’t know how sick or ill you will be feeling and how long you are going to live, so there’s this big question mark going through your mind. But today I don’t think about what I have, unless I am on my way to Dr Berenson, or I am taking some kind of a test.”

	“I have absolutely no fear of dying,” he adds. “I have a fear of being uncomfortable, or of not doing what I would like to do.”

	Specht is less sanguine about their future, but pretty sure of one thing.

	“I think that Ron is going to die from something else,” she says, “and not this disease.”

You'd never know that Rogers has had multiple myeloma for almost 11 years -- and that's just the way he likes it.

Back on the Horse: Ron Rogers

	Oncologist James Berenson, MD, likes all of his patients, especially the ones with whom he skis.

	The treatment rooms in Berenson’s West Hollywood, California clinic, where he treats hundreds of multiple myeloma patients, are named after famous slopes in the western United States. “When I am examining a patient, I imagine I am skiing a mountain,” Berenson says.

	Berenson was skiing with a patient, investment adviser Geoffrey Wainwright, in Utah when he took a spill and fell on his head. As Wainwright’s wife, an orthopedic surgeon, stood over him, the 58-year-old oncologist couldn’t help cracking a doctor joke.

	“OK,” Berenson announced, “I get a free consult.”

	A free consult might be a kind gesture of gratitude to the oncologist, but a year later the Wainwrights would show another sign of appreciation. A multiple myeloma patient of 4 years at the time, yet still an avid mountain climber, Wainwright overcame frostbite, howling zero-degree winds, and thin air to climb atop Mount Kilimanjaro’s 19,340-foot summit, the world’s tallest freestanding mountain. Once at the summit, Wainwright and his wife held up a sign that read, “Thank you, Dr Berenson.”

	A photo of that triumphal moment hangs in Berenson’s office. Now at the 4½-year mark and planning more mountain climbs and some sprint triathlons, the energetic Wainwright says he can’t help thinking of Kilimanjaro without also thinking of his doctor.

	Sunset Medical Tower, home of the Institute for Myeloma and Bone Cancer Research.

	“I don’t think I would be alive today if it weren’t for Jim,” Wainwright said. “Four years ago, I didn’t know I would still be alive. Here I feel great doing all the things I wanted to do and wouldn’t have imagined I could do. Even training for Kilimanjaro was a daunting task, and Dr Berenson, to his credit, was never one of those doctors who said I couldn’t do it.”

	Berenson’s work at the Institute for Myeloma and Bone Cancer Research, where he serves as the medical and scientific director and chief executive officer of Oncotherapeutics, may be keeping many myeloma patients like Climbing to New Heights James Berenson, MD, and the Institute for Myeloma and Bone Cancer Research Wainwright alive, and for years longer than they expect.

	And their quality of life has risen dramatically as well, Berenson said. The reasons, his patients and fellow doctors say, involve a three-pronged approach.

	“He has a first-class laboratory doing research, a clinic where he does treatment with his patients, and then he does the fundraising. It is unique with a capital U,” said Anne Meyer, MD, a physical medicine rehabilitation and pain management specialist who treats Berenson’s patients. “When he has the fundraisers, his patients love to be there and give back. It’s a sign that they’re so connected to him and his mission that they want to give back. They don’t forget him.”

	Berenson is proud of his Institute, its staff, and its capabilities. “The only thing we send out for is radiation and surgery. We have a mini-university,” he said.

	The Institute is also, Berenson added wryly, “a three-ring circus.”

	"...The bigger the institution, the more you can blame it on everybody else. That doesn’t happen here. Here we are all responsible.”

	Berenson, said patient Jackie Rabinowitz, is the ringmaster. A 47-year-old therapist with multiple myeloma, Rabinowitz was diagnosed about 2 years ago and went to the Institute almost immediately.

	“Pretty much everyone I spoke with said he was the way to go, that he was a cutting-edge, out-of-the box thinker, leading the field with his research. I liked that because what I had read online about multiple myeloma seemed a little bit daunting,” Rabinowitz said.

	According to American Cancer Society statistics released in April 2010, the lifetime risk of contracting multiple myeloma is 1 in 159 in the United States. About 20,180 new cases will be diagnosed (11,170 in men and 9,010 in women) annually.

	The 5-year relative survival rate for multiple myeloma is around 35%, with younger people more likely to live longer. However, the statistics indicate that recent improvements in treatment may result in a more favorable outlook for recently diagnosed patients, with, in some cases, the cancer going into remission for a time.

	Wainwright learned he had the disease after wakeboarding for the first time with friends in Utah, when on his first routine fall into the water, he broke his left shoulder—a possible indication that his bones were brittle. He and his wife were stunned to discover that he had multiple myeloma.

	“I walked into his clinic having read on the Internet that I might have three years to live,” Wainwright said. “To think your life will be cut that short is just incredibly depressing.”

	The first thing Berenson did that impressed them, Wainwright and Rabinowitz said, was give them his personal cell phone number, with instructions to call whenever they needed to. Berenson said he does that with all of his patients.

	“The reassurance of knowing that I can contact him anytime takes one whole layer of stress away. It might not sound like a big thing, but it’s huge when you are dealing with a complicated disease,” Rabinowitz said. “He is the only doctor I know who does it.”

	Berenson listens to his patients, according to Meyer. “He will call me two or more times a week and refer patients to me, and what’s cool about him is that he knows everything about them medically, and he will give me a little pearl about them as a person.”

	"Even training for Kilimanjaro was a daunting task, and Dr Berenson, to his credit, was never one of those doctors who said I couldn’t do it.”

	Wainwright finds that going to a clinic that treats only myeloma patients gives the place a warmer, more sympathetic feel. Patients don’t have to explain themselves or their illness. Everyone understands their problems already, and among staff, everyone is helpful, he said.

	“The objective here is to take care of the patient,” said Berenson. “When you go to larger institutions, things get in the way. There’s a diffusion of responsibility. The bigger the institution, the more you can blame it on everybody else. That doesn’t happen here. Here we are all responsible.”

	Under Berenson’s approach, the research and treatment wings of the Institute work together on a patient’s care, said Laura Audell, MD, an internist and anesthesiologist who has known Berenson since 1984. Berenson doesn’t just treat cancer. “By aggressively investigating myeloma’s side effects and developing treatments for them, he helps keep his patients alive longer and maintain their quality of life, while he gains insight into the workings of the disease,” said Audell.

	His approach to each patient, she said, is open-minded enough to include modalities such as acupuncture, physical therapy, and nutritional evaluations, but comprehensive enough to match treatments to patients’ lifestyles. He also works with the Institute’s researchers to investigate input from patients that might help create more and better ways to treat the disease, she said.

	“He has the ability to be an expert on both sides of the coin, so he has a lot of ideas that he develops in the laboratory that he brings to the clinic,” said Marshall Flam, MD, a Fresno-based oncologist and hematologist whose practice handles about 300 cases a week.

	Berenson’s somewhat offbeat approach might be why he generally prescribes lower doses of antimyeloma drugs, with less toxicity and side effects for patients, and why he is also known for avoiding bone marrow transplant operations, which don’t have a proven success rate with multiple myeloma, said Flam.

	“In the university [research setting], you get disconnected from the patient. I don’t get disconnected from the patient,” Berenson said. “The beauty of this setup is I can do things both ways.”

	Audell said that Berenson was among the first doctors she saw employing kyphoplasty, the use of acrylic cement to stabilize and reduce pain associated with vertebral compression fractures and restore vertebral height. Spinal fracture is a common side effect in myeloma patients.

		Dr James Berenson Talks About Arsenic Trioxide

	Most recently, Berenson said he has been using arsenic trioxide to break down proteins that drive myeloma and make it resistant to treatment, and inhibit the growth of blood vessels that help myeloma to grow, though the treatment is not yet FDA-approved.

 Berenson can legally use it, he said, with patient permission on patients for whom all other multiple myeloma treatment options have been exhausted.

	Berenson also mixes his investigative treatments with FDA-approved treatments that are tried and true. He uses bisphosphonates, drugs that have been used for years to slow or stop the dissolving of bone tissue. “We use bisphosphonates on all of our patients.”

	“I have spoken to patients at the clinic whose previous oncologists had said, ‘We have nothing more we can do for you. Go home,’” Rabinowitz said. “Dr Berenson will keep trying to find combinations that work,” she added. “He is a scientist, and to me a good scientist is a detective. Dr Berenson is a detective. He is interested in finding out, in looking. He is passionate about it. He is not just interested in administering drugs.”

	Anyone seeking a doctor to treat cancer should look for that quality, Wainwright said. Extensive experience with, and a strong awareness of, all of the newest treatments for the disease is important, as is an ability to recognize a patient’s humanity.

	“I would look for someone that I felt I could be very comfortable being very open and honest with and have that kind of rapport with,” Wainwright said. “You will be spending a lot of time with this person, so you want to feel like it’s someone you can truly view as a friend.

	"The eye on the ball today is the dollar bill. It’s a major problem. We forget that we are supposed to keep an eye on the patient. We need to care about patients, not dollar bills.”

	“It’s not always going to be good news. What is impressive to me about Dr Berenson is that as busy as he is, if there is bad news in a test, he will call up ahead of the appointment and tell you so you can be better prepared,” Wainwright added. “With him, you can be mentally prepared for the bad news, maybe do your own research, and discuss the bad news with your spouse so you are not getting hit cold with the bad news as you walk in the door.”

	And Geoffrey Gee, chief operating officer of James R. Berenson, MD, Inc, which is Berenson’s medical practice, said that Berenson consults with hundreds of doctors and patients worldwide about multiple myeloma, and helps doctors to shape patient treatment. Berenson said his approach is fueled by experience, as well as a disgust for bureaucracy and the facile trends of medicine.

	“I have worked in many settings, and they all have their problems,” Berenson said. “If you are in private care, the objective is to do as many tests as you can. If you are in an HMO setting, the objective is to do nothing because you get penalized for giving tests. Concierge medicine represents a lot of hand-holding by people who really, in my view, are not the crème de la crème of the medical profession.

	“The eye on the ball today is the dollar bill. It’s a major problem. We forget that we are supposed to keep an eye on the patient,” he added. “We need to care about patients, not dollar bills.”

			American Cancer Society. Multiple myeloma overview and detailed guide. Available at: 

			Video presentation on arsenic as a cancer treatment by Dr. James Berenson. Available at: 

Dr. James Berenson on Treating Multiple Myeloma with Arsenic

	Berenson believes that while medicine has a long way to go before multiple myeloma will be cured, more patients are living longer than ever before, and multiple myeloma and other cancers that affect the bones will be cured.

	“Myeloma today is a marathon, not a sprint race,” he said, “and eventually, we’re going to win.”

	And whenever he needs inspiration, Berenson looks at the picture of his friend Geoff Wainwright standing atop Kilimanjaro with notions of other peaks to climb.

	“It inspires me,” Berenson said, “that this guy gets to have a complete life now. It’s pretty cool.”

				The Institute for Myeloma and Bone Cancer Research is working with the director and producers of “Five More Years.” Berenson (left) has been advising the movie’s main players, such as Sugar Ray Leonard (right), on technical issues regarding multiple myeloma.

			Marcie Aboulafia is nothing if not a fighter, and her good friends, screenwriters Bruce Reisman and Kris Black, have had a ringside seat to her battle against multiple myeloma for years. Aboulafia’s story is the inspiration for “Five More Years,” a $4.5-million independent movie scheduled to be shot in Detroit this spring with an eye toward a premiere at the 2011 Cannes Film Festival.

			Black will star as Alex Winston, a West Virginia coal miner and amateur boxer who turns pro when his mother is diagnosed with multiple myeloma, and Reisman will direct the picture, which is being produced by Four-Legged Pictures in the production company’s debut film.

			The disease is a thread running through storylines in front of and behind the camera, as former lightweight boxing champion Sugar Ray Leonard, whose father battled multiple myeloma, is costarring as an ex-fighter, boxing trainer, and promoter who takes on Alex after a TV news reporter covers his story.

			Sugar Ray, the legendary real-life victor over Roberto Duran, is also training Black for the fight scenes in the film, coproducing the movie, and arranging for some big-name boxers to participate in the fight sequences.

			“Rocky” Oscar-winning film editor Scott Conrad will edit the movie, and Jackie Kallan, the “First Lady of Boxing” who has already been portrayed by Meg Ryan in the film “Against the Ropes,” gave the film her blessing and helped lure Leonard into the project.

			The film is due for a fall 2011 release in time to qualify for this year’s Academy Awards.

Oncologist James Berenson, MD, likes all of his patients, especially the ones with whom he skis.

Nick Sambides, Jr

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