Envy for-profit US healthcare? Check out this MD whose wife is a medical billing expert who spent over a year challenging an egregious billing error. After it all they still paid $1200. These are resourceful knowledgeable people who got taken for a ride.

— Raghu Venugopal MD (@raghu_venugopal)

— Dr. Raghu Venugopal, Toronto

A Plea for Sane Prices

I just read your story about the emergency room billing for a procedure that was not done (“A Billing Expert Saved Big After Finding an Incorrect Charge in Her Husband’s ER Bill,” Oct. 25). We too had a similar experience with an emergency room and a broken arm that was coded at a Level 5, and it was a simple break. No surgery needed, and it took them only 10 minutes to set and wrap the broken arm but charged us over $9,000. I disputed the charges, and it took six months to get them to reduce the bill but they never admitted that they coded a simple break incorrectly to jack up the price of the bill. If it had been a Level 5 issue, we would not have sat in the waiting room for six hours before being seen. It was a horrible experience, and I think ERs all over the nation are doing this to make up for the non-payers they treat every day. It is robbery.

— Terrence Campbell, Pocatello, Idaho

It would be great if the vaulted would clearly distinguish between the ED pro fee billing & hospital charges as it is not entirely clear here w/ in network svs.—Billing Expert Saved Big After Finding an Incorrect Charge in Her Husband’s ER Bill

— Ed Gaines (@EdGainesIII)

— Ed Gaines, Greensboro, North Carolina

As you said, CPT codes should always be examined. This case is probably more than “just an error.” As a retired orthopedic surgeon, chief of surgery, and chief of staff at a North Carolina hospital, I have seen care such as this coded exactly like this with the rationale that, “Hey, this was a fractured humerus and it was manipulated and splinted.” 24505 is correct IF that is the definitive treatment, which it was not here. Even code 24500 would indicate definitive treatment without manipulation. This was just temporary care until definitive care could be done later. It should be billed as a visit and a splint. The visit for this, if it was an isolated problem (no other injury or problems), would qualify only as a Level 2 visit. That frequently gets upcoded as well by adding a lot of non-pertinent family, medical, and social history and a complete physical exam (seven systems at least) and a whole lot of non-pertinent “medical decision making.” All of that should be documented in the medical records even if the hospital stonewalls on the CPT codes.

Look closely at medical records and you will find frequent upcoding, if you are familiar with the requirements for different levels of treatment.

— Dr. Charles Beemer, Arvada, Colorado

Never attribute to Baumol's cost disease that which is adequately explained by malice.

— Shashank Bhat (@shashank_ps)

— Shashank Bhat, San Francisco

A number of years ago, I was billed using a code that described a treatment that was not carried out. In similar fashion, I talked with my insurance company, which basically said it did not care whether the treatment took place or not as all it required was for a valid code to appear. I also contacted the Virginia Bureau of Insurance, which approves the various policies, and it said it had no jurisdiction over claims. I decided to let the hospital sue me for the disputed amount and defended myself in district court. Despite their attorney and four “witnesses,” the case was thrown out because the hospital was both unwilling and unable to justify the charges to the satisfaction of the judge. They did not want anybody in power to testify because of the questions they would have been asked, so they left it to people who were completely clueless. The takeaways from this were:

• Hospitals make up the numbers and leave them grossly inflated so they can claim that they are giving away care when they give discounts on the made-up numbers.
• Hospitals turn employees into separate billing entities so they can double-charge.
• Hospitals open facilities such as physical therapy in hospital locations because insurance companies will pay higher amounts when treatment is carried out in a hospital environment.
• Insurance companies and state insurance agencies do not act as gatekeepers to protect their clients/taxpayers.
• The insurance companies and the providers have a shared interest in the highest possible ticket prices and outrageous charges because the providers get to claim how generous they are with “unremunerated care,” and if the prices were affordable then they could not justify the high prices for insurance premiums and the allowed administration/profit share of 20% would be based on a far smaller amount.

In any other industry, this would have resulted in multiple antitrust suits. U.S. health care is a sad example of government, health care industry, and insurers all coming together against the interests of consumers. After this court case, I wanted to form a nonprofit to systematically challenge every outrageous charge against people who, unlike myself, did not believe or know how to defend themselves. If hospitals and other providers were forced to go to court to justify their charges on a systematic basis, pricing sanity would eventually prevail.

— Philip Solomon, Richmond, Virginia

The obvious solution to prosecute the hospital for fraud followed by a civil suit"A hospital charged nearly $7,000 for a procedure that was never performed"

— Barry Ritholtz (@Ritholtz)

— Barry Ritholtz, New York City

Patients as Watchdogs

Thank you for the article on Lupron Depot injections (Bill of the Month: “$38,398 for a Single Shot of a Very Old Cancer Drug,” Oct. 26). Last year, I was diagnosed with prostate cancer, though my case is not anywhere as severe as that experienced by Mr. Hinds.

Last month my urologist scheduled an MRI update for me at a facility owned by Northside Hospital Atlanta. At the suggestion of my beloved wife, I called my insurance company, UnitedHealthcare, to make sure the procedure was covered. Fortunately, it was. That being said, the agent from UnitedHealthcare mentioned that Northside Hospital’s fee was “quite a bit higher than the average for your area.” It was. Before insurance, the charge for an MRI at Northside was $6,291. I canceled the appointment at Northside and had the MRI done by a free-standing facility. Their charge, before insurance, was $1,234.

Every single encounter that I have with the health care system involves constant vigilance against price-gouging. When I have a procedure, I have to make sure that the facility is in-network,. that each physician is in-network, that any attending specialist such as an anesthesiologist or radiologist is in-network (and their base-facility as well). If I have a blood test, I have to double-check if the cost is included in a procedure or if it is separate. If it is a separate fee, I have to ensure that the analysis is also covered, and, if it is not, that it is not done through a hospital-owned facility but instead through a free-standing operation.

I have several ongoing conditions in addition to my prostate cancer — Dupuytren’s contracture, a rare bleeding disorder similar to thrombocytopenia, and arthritis. Needless to say, navigating our byzantine, inefficient, and profit-driven health care system is a total nightmare.

Health care in the United States has become so exceedingly outrageous. I cannot understand why it is not an issue that surfaces during election years or something that Congress is willing to address.

Again, thank you for your excellent reporting.

— Karl D. Lehman, Atlanta

Why capitalism without guardrails is a pipedream. Own the patent, control the pricing, and this is the result: $38,398 for a Single Shot of a Very Old Cancer Drug via

— Brian Murphy (@NorwoodCDI)

— Brian Murphy, Austin, Texas

I was a medical stop-loss underwriter and marketer for over 30 years. Most larger (company plans for 100-plus employees) are self-funded, meaning the carrier — as in this case, UnitedHealthcare — is supplying the administrative functions and network access for a fee, while using the employer’s money to pay claims.

Every administrator out there charges a case management fee, either as a stand-alone charge or buried in their fees. Either way, they all tout how they are looking out for both the employer and the patient.

Even if this plan was fully insured, wouldn’t it have been in the best interest of all parties when they became aware of the patient’s treatment (maybe after the first payment) to reach out to the patient and let them know there are other alternatives?

The question in these cases is who is minding the store for both the patient and the employer. The employer, the insurer, and the patient could have all saved a lot of money and pain, if someone from case management had actually questioned the first set of charges.

— Fred Burkacki, Sarasota, Florida��

I did a few rounds of Lupron in my 20s for severe , and I had to fight my insurance company to get approved. Now, this is how much it costs for some people.

— Amanda Oglesby 🌊 (@OglesbyAPP)

— Amanda Oglesby, Neptune, New Jersey

‘Bill of the Month’ Pays Off

I received a $1,075 refund on a colonoscopy bill I paid months earlier after listening to the KHN-NPR “Bill of the Month” segment “Her First Colonoscopy Cost Her $0. Her Second Cost $2,185. Why?” (May 31) and finding out the procedure should be covered under routine health care coverage. Thank you!

— Cynthia McBride, University Place, Washington

We have to close legal loopholes to make sure that cancer diagnostic procedures have the same insurance coverage as screening. Colonoscopies must be fully covered whether a polyp is found or not

— Erica Warner, ScD (@ewarner_12)

— Erica Warner, Boston

Removing Barriers to Benefits

In the story “People With Long Covid Face Barriers to Government Disability Benefits” (Nov. 9), you stated: “Many people with long covid don’t have the financial resources to hire a lawyer.” This is incorrect. When applying for disability, you don’t need financial resources. There are law firms that specialize in disability claims and will not charge you until you win your claim. And, according to federal law, those law firms can charge only a certain percentage of the back pay you would get once the claim has been won. Also, if you lose the claim, and the law firm has appealed as many times as possible, you don’t owe anything. Please don’t make it more difficult for those who are disabled with misinformation.

— Lorrie Crabtree, Los Angeles

People unable to work due to Long Covid are facing barriers to obtaining government disability benefits.

— Ron Chusid (@RonChusid)

— Ron Chusid, Muskegon, Michigan

Vaccine Injuries Deserve Attention, Too

I read your long-covid article with interest because many of the barriers and some of the symptoms faced by people with long covid are similar to those experienced by people with vaccine injuries. I’m really concerned about how there is even less attention and support for people who suffered adverse vaccine reactions.

Long covid and vaccine injuries are both issues of justice, mercy, and human rights as much as they are a range of complex medical conditions.

It’s nearly 20 months since someone I know sustained a serious adverse reaction, and it is heartbreaking how hard it has been for her to find doctors who will acknowledge what happened and try to help. There’s no medical or financial support from our government, and the Countermeasures Injury Compensation Program is truly a dead end, even as other countries such as Thailand, Australia, and the United Kingdom have begun to acknowledge and financially support people who sustained vaccine injuries.

I’ve contacted my congressional representatives dozens of times asking for help and sharing research papers about vaccine injuries, but they have declined to respond in meaningful ways. Similarly, my state-level representatives ignore questions about our vaccine mandate, which remains in place for state employees, despite at least one confirmed vaccine-caused fatality in a young mother who fell under the state mandate in order to volunteer at school.

There have been a few articles, such as …

… but no new ones have come to my attention recently, and it is concerning that the media and our political and public health leaders seem OK with leaving people behind as collateral damage.

Please consider writing a companion piece to highlight this need and the lack of a functional safety net or merciful response. My hope is that if long covid and vaccine injuries were both studied vigorously, new understanding would lead to therapeutics and treatments to help these people.

— Kathy Zelenka, Port Angeles, Washington

Given how long it took Congress to eventually approve "Agent Orange" and "Burn Pit" benefits for disabled veterans, it is at least a 15-20 year time frame and they don't have the backing or societal standing that veterans do.

— Matthew Guldin (@MRG_1977)

— Matthew Guldin, West Chester, Pennsylvania

More on Mammograms

The article “Despite Katie Couric’s Advice, Doctors Say Ultrasound Breast Exams May Not Be Needed” (Oct. 28) does a disservice to women and can cause harm. An ultrasound is saving my life. I had two mammograms with ultrasounds this year. Although the first mammogram showed one cyst that was diagnosed as “maybe benign,” I knew it wasn’t. Why? Because I could feel the difference. I insisted on a second, and sure enough a large-enough cyst that’s definitely malignant was found. I had breast surgery on Oct. 31, followed by radiation treatment and, if needed, chemotherapy later. This article will deprive other, less aggressive and experienced women who do not have health care credentials or a radiologist for a husband to be harmed by being lulled into complacency.

— Digna Irizarry Cassens, Yucca Valley, California

Why do some women with dense breasts get additional screening while others do not? ⁦⁩ explains. ⁦⁩

— Patricia Clark MD, FACS, FSSO (@patriciaclarkmd)

— Patricia Clark, Scottsdale, Arizona

Your article on breast cancer screening neglected to present the supplemental option of Abbreviated Breast MRI (AB-MRI). The out-of-pocket cost at many clinics ranges from $250 to $500. For a national listing of clinics that offer this supplemental screening option, please go to . For benefits, just Google “Abbreviated Breast MRI.”

— Elsie Spry, Wexford, Pennsylvania

Why didn’t more leave for safer havens during Hurricane Ian as recommended? ⁦⁩ rightfully suggests that learning why is critical as the population of older people grows and become more frequent.

— Donald H. Polite (@DonaldPolite)

— Donald H. Polite, Milwaukee

Preparation Plans for Seniors: All for One and One for All

At least 120 people died from Hurricane Ian, two-thirds of whom were 60 or older. This is a tragedy among our most vulnerable population that should have been prevented (“Hurricane Ian’s Deadly Impact on Florida Seniors Exposes Need for New Preparation Strategies,” Nov. 2).

Yes, coming together and developing preparedness plans is one way to protect seniors and avoid these kinds of tragedies in the future, but since this is not a one-size-fits-all situation, organizations that help seniors across the country must first look internally and be held accountable by making sure their teams always have a plan in place and are prepared to activate them at a moment’s notice.

During Hurricane Ian, I saw firsthand what can happen when teamwork and effective planning come together successfully to protect and prepare seniors with chronic health conditions like chronic obstructive pulmonary disease who require supplemental oxygen to breathe.

Home respiratory care providers and home oxygen suppliers worked tirelessly to ensure our patients received plenty of supplies to sustain them throughout the storm, and when some patients faced situations where their oxygen equipment wasn’t working properly inside their homes, staff members were readily available to calmly talk the patient through fixing the problem. After the winds receded, mobile vans were quickly stationed in safe spaces for patients or their family members to access the oxygen tanks and supplies they needed. If patients were unable to make it to these locations, staff members were dispatched to deliver tanks to their homes personally and check in on the patient.

Patients were also tracked down at shelters, and a team of volunteers was formed around the country to find patients who could not be reached by calling their emergency backup contacts, a friend, or family member. Through these established systems, we were able to remain in contact with all of our patients in Ian’s path to ensure their care was not impeded by the storm.

Organizations should always be ready and held accountable for the seniors they care for in times of disaster. I know my team will be ready. Will yours?

— Crispin Teufel, CEO of Lincare, Clearwater, Florida

Understanding the impact of on older people is critically important as the population expands and become more frequent and intense.

— Ashley Moore, MS, BSN Health Policy (@MooreRNPolicy)

— Ashley Moore, San Francisco

The Tall and the Short of BMI

I am amazed that in your article about BMI (“BMI: The Mismeasure of Weight and the Mistreatment of Obesity,” Oct. 12) you never mentioned anything about the loss of height. If a person goes from 5-foot-2 to 4-foot-10, the BMI changes significantly.

— Sue Robinson, Hanover, Pennsylvania

I've been against this since after gastric bypass surgery I got down to 164 pounds but at 5'7" BMI still considered me overweight. How an overreliance on BMI can stand between patients and treatment

— Steve Clark (@blindbites)

— Steve Clark, Lee’s Summit, Missouri

Caring for Nurses’ Mental Health

During the pandemic, when I read stories about how brave and selfless health care heroes were fighting covid-19, I wondered who was taking care of them and how they were processing those events. They put their own lives on the line treating patients and serving their communities, but how were these experiences affecting them? I am a mother of a nurse who was on the front lines. I constantly worried about her as well as her mental and physical well-being (“Employers Are Concerned About Covering Workers’ Mental Health Needs, Survey Finds,” Oct. 27). I was determined to find a way to honor and support her and her colleagues around the country.

I created a large collaborative art project called “The Together While Apart Project” that included the artwork of 18 other artists from around the United States. It originated during the lockdown phase of the pandemic, a time when we were all physically separated yet joined by a collective mission to create one amazing art installation to honor front-line workers, especially nurses. Upon its completion, this collaboration was recognized by the Smithsonian Institute, Channel Kindness (a nonprofit co-founded by Lady Gaga) and NOAH (National Organization of Arts in Medicine). After traveling around the Southeast to various hospitals for the past year on temporary exhibit, the artwork now hangs permanently in the main lobby at the University of Virginia Medical Center in Charlottesville, Virginia.

I wanted to do something philanthropic with this art project to honor and thank health care heroes for their dedication over the past two years. It was important to find a way to help support them and to ensure they are not being forgotten. Using art project as my platform, I partnered with the American Nurses Association and created a fundraiser. This campaign raises money for the ANA’s Well-Being Initiative programs, which support nurses struggling from burnout and post-traumatic stress disorder and who desperately need mental and physical wellness care. Fighting covid has taken a major toll on too many nurses. Some feel dehumanized and are not receiving the time off or the mental and physical resources needed to sustain them. Many are suffering in silence and have to choose between caring for themselves or their patients. They should not have to make this choice. Nurses are the lifeline in our communities and the backbone of the health care industry. When they suffer, we all suffer. Whether they work in hospitals, doctors’ offices, assisted living facilities, clinics or schools, every nurse has been negatively impacted in some way by the pandemic. They are being asked to do so much more than their jobs require in addition to experiencing greater health risks, less pay, and longer hours. Nurses under 35 and those of color are struggling in larger numbers.

The American Nurses Foundation offers many forms of wellness care at no charge. They rely heavily on donations to maintain the quality of their offerings as well as the ability to provide services to a growing number of nurses. I am an artist, not a professional fundraiser, and I have never raised money before. But I feel so strongly about ensuring that nurses receive the support and care they deserve, that I am willing to do whatever it takes to advocate and elevate these health care heroes.

The Together While Apart Project’s “Thank You Nurses Campaign” goal is $20,200, an amount chosen to reflect the numbers 2020, the year nurses became daily heroes. So far, I have raised over $15,500 through gifts in all amounts. For example, a $20 donation provides a nurse with a free one-hour call with a mental health specialist. That $20 alone makes a big difference and can change the life of one nurse for the better. The campaign has provided enough funding (year to date) to enable 940 nurses to receive free one-hour wellness calls with mental health specialists.

The online fundraiser can be found at .

— Deane Bowers, Seabrook Island, South Carolina

CEAPs, is it time to offer more services? Nearly 1/2 of employers (w/ 200 workers) report a growing share of workers using mental health services. Yet 56% report they lack providers for employees to access to timely care.

— EAPA (@EAPA)

— Employee Assistance Professionals Association, Arlington, Virginia

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• Read Tahir’s “Embedded Bias: How Medical Records Sow Discrimination”

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For frail nursing home residents, however, breast cancer surgery can harm their health and even hasten death, according to a study published Wednesday in JAMA Surgery.

The results have led some experts to question why patients who are fragile and advanced in years are screened for breast cancer, let alone given aggressive treatment.

The study examined the records of nearly 6,000 nursing home residents who had inpatient breast cancer surgery the past decade. It found that 31 to 42 percent died within a year of the procedure. That’s significantly higher than the 25 percent of nursing home residents who die in a typical year, said Dr. Victoria Tang, lead author and an assistant professor of geriatrics and hospital medicine at the University of California-San Francisco.

Although her study doesn’t include information about the cause of death, Tang said she suspects that many of the women died of underlying health problems or complications related to surgery, which can further weaken older patients. Patients who were the least able to take care of themselves before surgery, for example, were the most likely to die within the following year. Dementia also increased the risk of death.

It’s unlikely that many of the deaths were due to breast cancer, which often grows slowly in the elderly, Tang said. Breast cancers often take a decade to turn fatal.

“When someone gets breast cancer in a nursing home, it’s very unlikely to kill them,” said study co-author Dr. Laura Esserman, director of the UCSF

breast cancer center. “They are more likely to die from their underlying condition.”

Yet most patients in the study got sicker and less independent in the year following breast surgery.

Among patients who survived at least one year, 58 percent suffered a serious downturn in their ability to perform “activities of daily living,” such as dressing, bathing, eating, using the bathroom or walking across the room.

Women in the study, who were on average 82 years old, suffered from a variety of life-threatening health problems even before being diagnosed with breast cancer. About 57 percent suffered from cognitive decline, 36 percent had diabetes, 22 percent had heart failure, 17 percent had chronic lung disease, and 12 percent had survived a heart attack.

The high mortality rate in the study is striking because breast surgery is typically considered a low-risk procedure, said Dr. Deborah Korenstein, chief of general internal medicine at New York’s Memorial Sloan Kettering Cancer Center.

The paper provided an example of how sick, elderly people can suffer from surgery. An 89-year-old woman with dementia who underwent a mastectomy became confused after surgery and pulled off all her bandages. Health care workers had to restrain her in bed to prevent her from pulling off the bandages again. The woman died 15 months later of a heart attack.

Surgery late in life is more common than many realize. One-third of Medicare patients undergo surgery in the year before they die, according to a Eighteen percent of Medicare patients have surgery in their final month of life and 8 percent in their final week.

Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer’s disease, get regular mammograms, according to a study in the American Journal of Public Health.

The new study leaves some important questions unanswered.

The paper didn’t include healthier nursing home residents who are strong enough to undergo outpatient surgery, said Dr. Heather Neuman, a surgeon and associate professor at the University of Wisconsin School of Medicine and Public Health. These women may fare better than those who are very ill.

Esserman and Tang said their findings suggest doctors need to treat breast cancer differently in very frail patients.

“People think, ‘Oh, a lumpectomy is nothing,’” Esserman said. “But it’s not nothing in someone who is old and frail.”

In recent years, doctors have tried to scale back breast cancer therapy to help women avoid serious side effects. In June, for example, researchers announced that sophisticated genetic tests can help predict which breast cancers are less aggressive, a finding that could allow 70 percent of patients to avoid chemotherapy.

The Medicare database used in this study didn’t mention whether any of the patients had chemotherapy, radiation or other outpatient care. So the UCSF researchers acknowledged that they can’t rule out the possibility that some of the women suffered complications due to these other therapies. In general, however, authors noted that only 6 percent of nursing home residents with cancer are treated with chemotherapy or radiation.

The authors said doctors should give very frail patients the option of undergoing less aggressive therapy, such as hormonal treatments. In other cases, doctors could offer to simply treat symptoms as they appear.

The new study raises questions about the value of screening nursing home residents for breast cancer, Korenstein said. Although the hasn’t set an upper age limit for breast cancer screening, it advises women to be screened as long as they’re in good health and expected to live at least another decade.

Residents of nursing homes generally can’t expect to live long enough to benefit from breast screening, Korenstein said.

“It makes no sense to screen people in nursing homes,” Korenstein said. “The harms of doing anything about what you find are far going to outweigh the benefits.”

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But the total costs of Kymriah and the in development — known as CAR T-cell therapies — will be far higher than many have imagined, reaching $1 million or more per patient, according to leading cancer experts. The next CAR T-cell drug could be approved as soon as November.

Although Kymriah’s price tag has “shattered oncology drug pricing norms,” said Leonard Saltz, chief of gastrointestinal oncology at Memorial Sloan Kettering Cancer Center in New York, “the sticker price is just the starting point.”

The cytokine storm felt like “the worst flu of your life,” said Eaton, now 51. His fever spiked so high that a hospital nurse assumed the thermometer was broken. Eaton replied, “It’s not broken. My temperature is too high to register on the thermometer.”

Although Eaton recovered, he wasn’t done with treatment. His doctors recommended a bone-marrow transplant, another harrowing procedure, at a cost of hundreds of thousands of dollars.

Eaton said he feels fortunate to be healthy today, with tests showing no evidence of leukemia. His insurer paid for almost everything.

Kymriah’s sticker price is especially “outrageous” given its relatively low manufacturing costs, said Dr. Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.

The gene therapy process used to create Kymriah costs about $15,000, according to a 2012 presentation by Dr. Carl June, who pioneered CAR T-cell research at the University of Pennsylvania. June could not be reached for comment.

To quell unrest about price, Novartis has offered patients and insurers a new twist on the money-back guarantee.

Novartis will charge for the drug only if patients go into within one month of treatment. In a key , 83 percent of the children and young adults treated with Kymriah went into remission within three months. Novartis calls the plan “outcomes-based pricing.”

Novartis is “working through the specific details” of how the pricing plan will affect the Centers for Medicare & Medicaid Services, which pays for care for many cancer patients, company spokeswoman Julie Masow said. “There are many hurdles” to this type of pricing plan but, Masow said, “Novartis is committed to making this happen.”

Masow said that Kymriah’s manufacturing costs are much higher than $15,000, although she didn’t cite a specific dollar amount. She noted that Novartis has invested heavily in the technology, designing “an innovative manufacturing facility and process specifically for cellular therapies.”

As for Kymriah-related hospital and medication charges, “costs will vary from patient to patient and treatment center to treatment center, based on the level of care each patient requires,” Masow said. “Kymriah is a one-time treatment that has shown remarkable early, deep and durable responses in these children who are very sick and often out of options.”

Some doctors said Kymriah, which could be used by about 600 patients a year, offers an incalculable benefit for desperately ill young people. Kymriah is for children and young adults with a type of acute lymphoblastic leukemia and already have been treated with at least two other cancer therapies.

“A kid’s life is priceless,” said Dr. Michelle Hermiston, director of pediatric immunotherapy at UCSF Benioff Children’s Hospital San Francisco. “Any given kid has the potential to make financial impacts over a lifetime that far outweigh the cost of their cure. From this perspective, every child in my mind deserves the best curative therapy we can offer.”

Other cancer doctors say the Novartis plan is no bargain.

About who go into remission with Kymriah relapse within one year, said Dr. Vinay Prasad, an assistant professor of medicine at Oregon Health & Science University. Many of these patients will need additional treatment, said Prasad, who wrote an editorial about Kymriah’s price Oct. 4��in

“If you’ve paid half a million dollars for drugs and half a million dollars for care, and a year later your cancer is back, is that a good deal?” asked Saltz, who co-wrote a

Dr. Steve Miller, chief medical officer for Express Scripts, a pharmacy benefit manager, said it would be more fair to judge Kymriah’s success after six months of treatment, rather than one month. Prasad goes even further. He said Novartis should issue refunds for any patient whose leukemia relapses within three years.

A consumer advocate group called ��also has said that Kymriah costs too much, given that the federal government spent more than����over two decades to support the basic research into CAR T-cell therapy, long before Novartis bought the rights.

Rep. Lloyd Doggett, D-Texas, to the Medicare program’s director last month asking for details on how the Novartis payment deal will work.

“As Big Pharma continues to put price gouging before patient access, companies will point more and more proudly at their pricing agreements,” Doggett wrote. “But taxpayers deserve to know more about how these agreements will work — whether they will actually save the government money, defray these massive costs, and ensure that they can access life-saving medications.”

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Sin embargo, en todo ese tiempo, los médicos nunca le dijeron, a él o a su marido, si su cáncer era curable, o si lo iba a matar.

“No hemos preguntado sobre la cura o cuánto tiempo tengo”, dijo Mead-e, de 63 años, de Georgetown, Delaware, en una entrevista en mayo. “No hemos preguntado y el médico no nos ha dicho. Supongo que tenemos la cabeza metida en la arena”.

En un momento en que , los pacientes como Mead-e tienen más opciones de terapias que nunca. Sin embargo, la mayoría están en las sombras porque sus médicos no pueden o no quieren comunicarse claramente. Muchos pacientes agravan el problema evitando noticias que no quieren oír.

Sorprendentemente, un gran número de pacientes con cáncer no tienen información básica, como cuánto tiempo pueden esperar vivir, si su condición es curable o por qué están recibiendo , dijo el doctor Rab Razzak, director de medicina paliativa ambulatoria en Johns Hopkins Medicine en Baltimore, Maryland.

El resultado: las personas con cáncer avanzado no saben lo suficiente acerca de su enfermedad como para tomar decisiones informadas sobre el tratamiento o cómo quieren usar el tiempo que les queda.

“Evitar estos temas es realmente irresponsable”, dijo la doctora Ira Byock, directora ejecutiva del Instituto para el Cuidado Humano de Providence Health & Services, con sede en Torrance, California.

Incluso los oncólogos que prescriben tratamientos contra el cáncer podrían no darse cuenta de que muchos de sus pacientes no tienen ni idea de lo que está pasando. “No creo que reconozcan la enormidad de la situación”, dijo Razzak.

Algunos pacientes se acercan al final de la vida , suponiendo que van a vivir mucho más tiempo de lo que es realista. Sin embargo, los médicos a menudo tienen una estimación mucho más pesimista de su esperanza de vida, dijo el doctor Robert Gramling, catedrático en medicina paliativa de Holly & Bob Miller en la Escuela de Medicina de la Universidad de Vermont.

En un estudio publicado el año pasado en el , sólo el 5% de los pacientes con cáncer con menos de seis meses de vida tenían una comprensión precisa de su enfermedad. El 38% no recordaba haber hablado con su médico sobre su esperanza de vida.

Y en , el 69% de los pacientes con cáncer de pulmón metastásico y el 81% de las personas con cáncer colorrectal avanzado creían que todavía podían curarse, aunque ambas condiciones generalmente se consideran mortales, dijo la coautora del estudio, la doctora Nancy Keating, profesora de política de atención médica en la Escuela de Medicina de Harvard.

Tales malentendidos pueden tener profundas consecuencias para los pacientes y sus cuidadores. Frecuentemente, los pacientes que eligen una terapia excesivamente agresiva que puede causar dolor y sufrimiento innesesario.

Casi un tercio de los pacientes con cáncer acaban en la unidad de cuidados intensivos (UCI) en el último mes de vida, según el .��Aunque el cuidado intensivo puede salvar la vida de personas más jóvenes y saludables, no mejora ni alarga la vida de las personas con cáncer terminal.

“Es sorprendente cuántas personas terminan en una UCI, gravemente enfermas y agonizantes, sin darse cuenta de que se están muriendo”, dijo el doctor Mark Siegel, profesor de medicina interna y especialista en cuidados críticos de la Escuela de Medicina de Yale.

Estas últimas medidas para prolongar la vida pueden dejar a las familias con , dijo Siegel. Aunque casi la mitad de los estadounidenses utilizan —que se enfoca en brindar confort al final de la vida— los estudios muestran que muchas personas llegan al hospicio muy tarde en su enfermedad, a menudo sólo una semana antes de la muerte.

“La verdadera pregunta es: ‘¿Cómo es que estos pacientes son demasiado optimistas sobre su diagnóstico y qué papel juegan los médicos en esto?'”, dijo Siegel. “¿Qué les dicen los médicos a los pacientes? ¿Qué están escuchando los pacientes?”

En algunos casos, los oncólogos . En otros, los pacientes entienden claramente su diagnóstico, pero están demasiado abrumados para . Algunos médicos y pacientes tienen , un pacto que los investigadores han descrito como una

Los nuevos tratamientos han hecho que las discusiones sobre el diagnóstico sean aún más complicadas, dijo la doctora Jennifer Temel, directora de investigación de resultados de cáncer en el Centro para Cáncer del Hospital General de Massachusetts. Aunque los cánceres avanzados todavía son generalmente fatales, una fracción de los pacientes debido a estos medicamentos.

Sin embargo, los médicos no siempre pueden estar seguros de qué es beneficioso para los pacientes, dijo Temel. Muchos pacientes que ponen sus esperanzas en las nuevas terapias terminan retrasando decisiones críticas sobre el cuidado al final de la vida, dijo Holly Prigerson, codirectora del Centro de Investigación sobre el Cuidado al Final de la Vida en el Colegio Médico Weill Cornell de Nueva York.

“Todos estos cambios nos están obligando a repensar la forma en que hablamos con los pacientes”, dijo Temel.

El optimismo

Cuando la duda amenaza, tanto los médicos como los pacientes eligen el lado optimista, asumiendo que el tratamiento va a funcionar.

Darle malas noticias, particularmente a quienes han sido pacientes por mucho tiempo, puede ser doloroso, dijo el doctor Ronald Adelman, cojefe de geriatría y medicina paliativa en el Hospital Presbiteriano de Nueva York / Centro Médico Weill Cornell.

“Tienen una relación larga y una buena conexión, y es muy difícil no poder darles a los pacientes lo que esperan”, dijo Adelman.

Incluso los médicos que quieren ser honestos a menudo son incapaces de diagnosticar cuánto tiempo de vida les queda a los pacientes.

En , sólo el 20% de los médicos de hospicios predijo con precisión cuánto tiempo sobrevivirían los pacientes. La mayoría ni siquiera estaba cerca, estimando que los pacientes vivirían cinco veces más de lo que vivieron.

Significativamente, cuanto más tiempo tenían los médicos de conocer a sus pacientes, más probabilidades tenían de equivocarse, sugiriendo que los lazos emocionales nublaban el razonamiento de los médicos.

Incluso los pacientes con cánceres tempranos y curables a menudo carecen de información clave.

El año pasado, Nicole Wesolowski, de 27 años, fue diagnosticada con cáncer de recto en las primeras etapas y ha soportado cirugía y quimioterapia con la esperanza de curarse. Pero ella dijo que su médico nunca le advirtió cuáles son las posibilidades de que su cáncer regrese.

“Los médicos no quieren decirte algo que no saben”, dijo Wesolowski, de la ciudad de Nueva York, quien dijo que no hay estudios que ayuden a predecir sus posibilidades de curación, tanto porque es mucho más joven que el típico paciente con cáncer y porque recibió un tratamiento experimental. “No creo que [mi médico] tenga una respuesta. Creo que es mejor si no lo sé”.

Para Wesolowski, el comportamiento de su médico le dice todo lo que necesita saber.

“Mi cirujano parece muy confiado”, dijo Wesolowski. “Las estadísticas no me ayudarán a tener menos miedo… Sólo voy a confiar en la gente que me ha llevado tan lejos en tan poco tiempo”.

Decir mucho, pero comunicar poco

Desde hace tiempo por no darles a los pacientes las noticias que necesitan para planificar su futuro. En un estudio de 2001, el 40% dijo que daría estimaciones de supervivencia inexactas, en su mayoría pintando un cuadro demasiado optimista.

Las grabaciones de las visitas clínicas muestran que los oncólogos dedican menos del 10% de su tiempo a hablar del diagnóstico de los pacientes, según un estudio de marzo publicado en el Journal of Oncology Practice, en el que los investigadores escucharon 128 grabaciones de audio de oncólogos y pacientes.

Un médico en el estudio “cubrió” la noticia de que el cáncer de un paciente había empeorado al cambiar rápidamente al tema de opciones de tratamiento.

“La buena noticia es que hay muchas otras opciones”, dijo.

Los médicos del estudio también usaron términos médicos que los pacientes podrían no entender, dijo el coautor, el doctor Toby Campbell, jefe de cuidados paliativos de la Facultad de Medicina y Salud Pública de la Universidad de Wisconsin.

Tal jerga médica dio una esperanza falsa a la madre de Carolyn McClanahan después de que ella fuera diagnosticada con cáncer terminal de hígado a los 66 años.

Un médico le dijo a su madre que había un 25% de probabilidad de que su tumor “respondiera” a la quimioterapia, lo que significaba que se reduciría. La madre de McClanahan, desesperada por buenas noticias, asumió que esto significaba que tenía un 25% de posibilidades de curarse, a pesar de que su cáncer era incurable. Mientras que la reducción de un tumor puede proporcionar un alivio a los síntomas, no necesariamente prolonga la vida.

La quimio hizo que la madre de McClanahan desarrollara úlceras dolorosas en la boca y el esófago, lo que le impidió comer o beber, dijo McClanahan, ex médica familiar y de emergencias en Jacksonville, Florida.

Su madre se deshidrató y fue hospitalizada durante dos semanas, alimentándose sólo a través de un tubo, dijo McClanahan.

Su madre entró al cuidado de hospicio, que se enfoca en proporcionar comodidad al final de la vida, y murió dos semanas más tarde.

“Afortunadamente, tuvimos un par de buenas semanas antes de morir”, dijo McClanahan, quien ahora trabaja como planificadora financiera. “Todavía estoy tan enojada conmigo misma por lo que ella sufrió”.

Comprando buenas noticias

En las encuestas, casi todas las personas con cáncer dicen que quieren que los médicos sean honestos con ellos.

En el mundo real, los médicos pueden pagar un precio por la honestidad.

Los tienden a preferir a los médicos que ofrecen mensajes optimistas, clasificándolos como más compasivos y dignos de confianza, según .

De hecho, los pacientes con una idea menos precisa de su diagnóstico —quienes erróneamente creen que la quimioterapia puede curar un cáncer incurable— les dan a sus médicos la en comunicación.

“Los pacientes quieren que los médicos sean honestos con ellos, y quieren que los médicos honestamente les digan que su enfermedad puede curarse”, dijo Gramling.

Cuando se enfrentan a noticias traumáticas, algunos pacientes son incapaces de procesar la información, incluso cuando los médicos son contundentes, .

En , un tercio de los pacientes con cáncer avanzado creyó equivocadamente que su enfermedad era curable, incluso después de leer material educativo que decía: “en este escenario, no hay posibilidad de cura”.

“Lo que los médicos dicen y lo que los pacientes escuchan son dos cosas muy diferentes”, dijo el doctor Leonard Saltz, jefe del servicio de oncología gastrointestinal del Centro para Cáncer del Memorial Sloan Kettering de Nueva York. “Hay mecanismos de supervivencia que ayudan a las personas a no escuchar que van a morir”.

Si las palabras de los médicos no llegan a los pacientes, puede ser porque los pacientes valoran mucho más otras opiniones.

En , más del 70% de los pacientes basaron el tiempo que esperaban vivir en sus creencias personales. El 6% basó sus estimaciones en creencias religiosas, mientras que el 18% basó sus estimaciones en información de su médico.

“Cuando el médico dice: ‘Te daremos esta quimioterapia y puede prolongar tu vida’, el paciente piensa,’Estoy seguro de que la cura estará disponible en unos meses más y esto me mantendrá vivo hasta que llegue la cura'”, dijo Betty Ferrell, directora de educación e investigación en enfermería en el Centro Médico Nacional City of Hope en Duarte, California.

Los oncólogos dicen que luchan por proporcionar información precisa, sin asustar a los pacientes.

Si los médicos parecen demasiado negativos, “los pacientes saldrán por la puerta y verán a otro médico que les dirá lo que quieren oír”, dijo Saltz.

Paulette Thompson-Clinton dijo que “despidió” a un oncólogo por ser demasiado negativo. Thompson-Clinton, una ministra con un cáncer de seno que se extendió a sus huesos, dijo que prefiere vivir con “fe y optimismo”.

“Mi oncólogo dijo: ‘El promedio de vida es de tres años, así que probablemente vivirás esa cantidad de tiempo'”, contó Thompson-Clinton, de 49 años, de Bethany, Connecticut, quien desde entonces ha sobrevivido 7 años y medio. “Parecía no haber esperanza. Estaba buscando a alguien con quien asociarme. Se necesita mucha energía y esfuerzo”.

Thompson-Clinton dijo que actualmente se encuentra de nuevo en una encrucijada. Sus tratamientos contra el cáncer dejaron de funcionar y su médico ha recomendado quimioterapia intravenosa, algo que ella no quiere hacer. Está considerando la medicina alternativa, incluyendo una clínica en Tijuana, México.

“Estoy en un lugar más difícil de lo que he estado”, dijo Thompson-Clinton. “Siento que estoy al final de mis opciones”.

Adaptando el mensaje para el paciente

Ser diagnosticada con cáncer de seno hace ocho años forzó a Heather Block a aprender dos idiomas: la jerga médica que habla su oncólogo y el vocabulario aún más laberíntico de las compañías de seguros.

Para evitar la confusión, Block lleva un cuaderno a cada visita médica, luego le da a su oncólogo un resumen escrito sobre lo que ve como los próximos pasos en el tratamiento.

“Lo pongo por escrito para asegurarme de que estamos en la misma página”, dijo Block, de 54 años, residente de Lewes, Delaware.

Al igual que Block, algunas personas con cáncer “quieren saberlo todo”. Para otros, demasiada información es abrumadora, y lo enfrentan mejor sabiendo lo menos posible, dijo Razzak.

Algunas de las mujeres en el grupo de apoyo al cáncer al que asiste Block mantienen los nombres de sus medicamentos en tarjetas en sus bolsos. Es la única manera en que pueden recordarlos, dijo.

Es por eso que a los médicos les ayuda adaptar sus mensajes a las necesidades de cada persona, dijo el doctor Richard Schilsky, director médico de la Sociedad Americana de Oncología Clínica. Cuando conocen a un nuevo paciente, le hace dos preguntas: “¿Qué sabes sobre tu cáncer?” y “¿Qué es lo que quieres saber?”

Estas preguntas permiten a los pacientes tomar la iniciativa, recibiendo sólo tanta cantidad de información como quieran, dijo Schilsky.

Estudios sugieren que el cuidado paliativo —que se enfoca en la calidad de vida de las personas con enfermedades graves y sus cuidadores— mejora la comprensión que los pacientes tienen de su enfermedad.

Para los pacientes cerca del final de la vida, hablar de sus metas y valores puede ayudar a las personas a evitar intervenciones médicas no deseadas, dijo la doctora Rachelle Bernacki, directora asociada del Programa de Atención de Enfermedades Graves en Ariadne Labs, un centro de investigación de atención de salud dirigido por el doctor Atul Gawande.

En , los pacientes que tuvieron conversaciones sobre el final de la vida tuvieron la mitad de probabilidades de terminar en la UCI antes de morir, en comparación con los pacientes que no las tuvieron.

Ahora, la Sociedad Americana de Oncología Clínica, el grupo más grande del país de especialistas en cáncer, que todas las personas con cáncer avanzado reciban cuidados paliativos dentro de las ocho semanas posteriores al diagnóstico. Varios estudios muestran que los cuidados paliativos tempranos han ayudado a los pacientes a .

Las conversaciones sobre cuidados paliativos incluyen este tipo de preguntas: “¿Cómo podemos seguir esperando lo mejor, pero prepararnos para lo peor?”, dijo Ferrell, quien ayudó a escribir las directrices de cuidados paliativos.

Sin embargo, los especialistas en cuidados paliativos son , agregó Ferrell.

Es por eso que Ariadne Labs ha creado una para ayudar a todos los proveedores de salud a liderar estas discusiones. Bernacki y otros han capacitado a más de 1,700 médicos, enfermeras y otros para que la usen.

Después de hablar para esta historia, Bruce Mead-e —el hombre de Delaware con cáncer de pulmón avanzado— decidió preguntarle a su oncólogo si su enfermedad era curable.

Mead-e no se sorprendió por lo que escuchó. “No es como si un día pudiera curarse realmente”, dijo Mead-e. Con el tratamiento, sin embargo, el cáncer “podría entrar en remisión”.

Su médico escribió los objetivos del tratamiento: disminuir el crecimiento del cáncer, aliviar los síntomas y los efectos secundarios del tratamiento y mantenerlo cómodo si surge el dolor.

Mead-e y su esposo, Chuck, también se han reunido con un proveedor de cuidado pastoral que trabaja con un hospicio local. La experiencia, que incluyó oración, fue edificante para ambos. El proveedor de cuidado pastoral “ve el lado positivo de las cosas y no se detiene en lo que podría haber o debería haber hecho”, dijo Mead-e. “Me ayudó a sentir esperanza”.

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Yet in all that time, doctors never told him or his husband whether the cancer was curable — or likely to take Mead-e’s life.

“We haven’t asked about cure or how much time I have,” said Mead-e, 63, of Georgetown, Del., in a May interview. “We haven’t asked, and he hasn’t offered. I guess we have our heads in the sand.”

At a time when expensive new cancer , patients such as Mead-e have more therapy choices than ever before. Yet patients like him are largely kept in the dark because their doctors either can’t or won’t communicate clearly. Many patients compound the problem by avoiding news they don’t want to hear.

The result: People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.

“Avoiding these issues is really irresponsible,” said Dr. Ira Byock, executive director at the Institute for Human Caring of Providence Health & Services, based in Torrance, Calif.

Even the oncologists who prescribe cancer treatment might not realize that so many of their patients are clueless about what’s going on. “I don’t think they recognize the enormity of it,” Razzak said.

Some patients approaching the end of life , assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine.

In a study published last year in the only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy.

And in a , 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.

Such misunderstandings can have profound consequences for patients and their caregivers. Patients who often choose overly aggressive therapy that can cause pointless pain and suffering.

Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.

“It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine.

These last-ditch measures to extend life can leave families with Siegel said. Although almost half of Americans use — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death.

“The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”

In some cases, how long they have to live. In others, patients are clearly told their prognosis, but are too overwhelmed to . Some doctors and patients enter into an a pact that researchers have described as

New treatments have made discussions about prognosis , said Dr. Jennifer Temel, director of cancer outcomes research at the Massachusetts General Hospital Cancer Center. Although advanced cancers are still usually fatal, a fraction of patients are .

Doctors can’t always be sure, though, which patients are likely to benefit, Temel said. Many patients who put their hopes in new therapies end up delaying critical decisions about end-of-life care, said Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College in New York.

“All of these changes are requiring us to rethink how we talk to patients,” Temel said.

The Optimism Bias

When in doubt, both doctors and patients tend to , assuming that a treatment will work.

Delivering bad news, particularly to longtime patients, can be painful, said Dr. Ronald Adelman, co-chief of geriatrics and palliative medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center.

“They have a long, connected relationship and it’s very hard to not be able to deliver what the patients are hoping for,” Adelman said.

Even doctors who want to be honest are often unable to forecast how long patients will live.

In a , only 20 percent of hospice doctors accurately predicted how long patients would survive. Most weren’t even close, estimating that patients would live five times longer than they did.

Significantly, the longer that doctors knew their patients, the more likely they were to get it wrong, suggesting that emotional bonds clouded doctors’ thinking.

Even patients with early, curable cancers often lack key information.

Nicole Wesolowski was diagnosed with early rectal cancer last year at age 27, and has endured surgery and chemotherapy in the hopes of curing it. But she said her doctor has never told her what the chances are that her cancer will come back.

“Doctors don’t want to tell you something they don’t know,” said Wesolowski, of New York City, who said there are no studies to help predict her chances of cure, both because she’s so much younger than the typical cancer patient and because she received an experimental treatment. “I don’t think [my doctor] has an answer. It might be better if I don’t know.”

For Wesolowski, her doctor’s demeanor tells her all she needs to know.

“My surgeon seems very confident,” Wesolowski said. “Statistics aren’t going to help me be less afraid. … I’m just going to trust the people who have gotten me so far in such a small amount of time.”

Saying A Lot, But Communicating Little

Oncologists for failing to give patients the news they need to plan their futures. In a 2001 study, 40 percent said they would give inaccurate survival estimates — mostly painting an overly sunny picture.

Recordings of clinic visits show that oncologists devote less than 10 percent of their time to talking about patients’ prognosis, according to in the Journal of Oncology Practice, in which researchers listened to 128 audio recordings of oncologists and patients.

One doctor in the study obscured the news that a patient’s cancer had gotten worse by quickly transitioning to treatment choices.

“The good news is there’s lots of other options here,” he said.

Doctors in the study also overused medical terms that patients might not understand, said co-author Dr. Toby Campbell, chief of palliative care at the University of Wisconsin School of Medicine and Public Health.

Such medical jargon gave Carolyn McClanahan’s mother false hope after she was diagnosed with terminal liver cancer at age 66.

A doctor told her mother that there was a 25 percent chance that her tumor would “respond” to chemo, meaning that it would shrink. McClanahan’s mother, desperate for good news, assumed this meant she had a 25 percent chance of cure — even though her cancer was incurable. While shrinking a tumor can provide some relief from symptoms, it doesn’t necessarily prolong life.

The chemo caused McClanahan’s mother to develop painful ulcers in her mouth and esophagus, which prevented her from eating or drinking, said McClanahan, a former family physician and emergency medicine doctor from Jacksonville, Fla.

Her mother became dehydrated and was hospitalized for two weeks, taking in nutrition only through a tube, McClanahan said.

Her mother entered hospice care, which focuses on providing comfort at the end of life, and died two weeks later.

“Thankfully, we had a couple good weeks before she died,” said McClanahan, who now works as a financial planner. “I’m still so angry at myself for what she went through.”

Shopping For Good News

In surveys, overwhelmingly say they want doctors to be .

In the real world, doctors can pay a price for honesty.

Cancer patients tend to prefer doctors who deliver optimistic messages, rating them as more compassionate and trustworthy, according to .

In fact, patients with the least accurate idea of their prognosis — who mistakenly believe that chemo can cure an incurable cancer — for communication.

“Patients want doctors to be honest with them, and they want doctors to honestly tell them that their disease can be cured,” Gramling said.

When faced with traumatic news, some patients are unable to process the information, even when doctors are blunt,

One-third of patients with advanced cancer mistakenly believed their disease was curable, even after reading educational material that stated, “In this setting, there is no chance of cure.”

“What doctors say and what patients hear are very different,” said Dr. Leonard Saltz, chief of the gastrointestinal oncology service at New York’s Memorial Sloan Kettering Cancer Center. “There are coping mechanisms that help people get through the day by simply not hearing that they’re going to die.”

If doctors’ words fail to get through to patients, it may be because patients value other opinions more highly.

In a , more than 70 percent of patients based how long they expected to live on personal beliefs. Six percent based their estimates on religious beliefs, while 18 percent based their estimates on information from their doctor.

“When the physician says, ‘We’ll give you this chemo and it may prolong your life,’ the patient thinks, ‘I’m sure the cure is just a few more months down the road, and this will keep me alive until the cure comes along,’” said Betty Ferrell, director of nursing research and education at City of Hope National Medical Center in Duarte, Calif.

Oncologists say they struggle to provide accurate information, without scaring patients away.

If doctors appear too negative, “patients will go out the door and see another doctor who will tell them what they want to hear,” Saltz said.

Paulette Thompson-Clinton said she “fired” an oncologist for being too negative. Thompson-Clinton, a minister with breast cancer that has spread to her bones, said she chooses to live with “faith and optimism.”

“My oncologist said, ‘The average life span is three years, so you’ll probably live about that amount of time,’” said Thompson-Clinton, 49, of Bethany, Conn., who has since survived 7½ years. “There just seemed to be no hope. I was looking for someone to partner with. It takes a lot of energy and effort.”

Today, Thompson-Clinton said she again finds herself at a crossroads. Her previous cancer treatments have stopped working, and her doctor has recommended intravenous chemotherapy — something she doesn’t want to do. She’s considering alternative medicine, including a clinic in Tijuana, Mexico.

“I’m in a harder place than I’ve ever been,” Thompson-Clinton said. “I feel like I’m at the end of my options.”

Tailoring The Message To The Patient

Being diagnosed with breast cancer over eight years ago forced Heather Block to learn two foreign languages: the medical jargon spoken by her oncologist and the even more arcane vocabulary of insurance companies.

To avoid confusion, Block brings a notebook to every doctor’s visit, then gives her oncologist a written summary about what she sees as the next steps in treatment.

“I put it in writing so I make sure that we’re on the same page,” said Block, 54, a resident of Lewes, Del.

Like Block, some people with cancer “want to know everything.” For others, too much information is overwhelming, and they cope better knowing as little as possible, Razzak said.

Some of the women at Block’s cancer support group keep the names of their medications on cards in their handbags. It’s the only way they can remember them, she said.

That’s why it helps if doctors tailor their messages to the needs of the individual, said Dr. Richard Schilsky, chief medical officer of the American Society of Clinical Oncology. When meeting a new patient, he asks two questions: “What do you know about your cancer?” and “What do you want to know?”

These questions allow patients to take the lead, receiving only as much information as they want, Schilsky said.

suggest that palliative care — which focuses on quality of life in people with serious illness and their caregivers — improves patients’ understanding of their disease.

For patients near the end of life, talking about their goals and values can help people avoid unwanted medical interventions, said Dr. Rachelle Bernacki, associate director of the Serious Illness Care Program at Ariadne Labs, a health care research center led by Dr. Atul Gawande.

patients who had end-of-life discussions were half as likely to wind up in the ICU before they died, compared to patients who didn’t have such conversations.

The American Society of Clinical Oncology, the country’s largest group of cancer specialists, that everyone with advanced cancer receive palliative care within eight weeks of diagnosis. Several studies show that early palliative care has been shown to help patients .

Palliative care conversations include questions such as “How can we continue to hope for the best but prepare for the worst?” said Ferrell, who helped write the palliative care guidelines.

Yet palliative care specialists , Ferrell said.

That’s why Ariadne Labs has created a meant to help all health providers lead these discussions. Bernacki and others have trained more than 1,700 doctors, nurses and others to use it.

After talking to a reporter for this story, Bruce Mead-e — the Delaware man with advanced lung cancer — decided to ask his oncologist whether his disease was curable.

Mead-e wasn’t surprised by what he heard. “It’s not like it will ever really be cured,” Mead-e said. With treatment, however, the cancer “could go into remission.”

His doctor typed out the goals of treatment — to slow the growth of Mead-e’s cancer, relieve symptoms and side effects of treatment, and keep him comfortable if pain arises.

Mead-e and his husband, Chuck, also have met with a pastoral care provider who works with a local hospice. The experience, which included prayer, was uplifting for both of them. The pastoral care provider “sees the bright side of things, and doesn’t dwell on what you could have or should have done,” Mead-e said. “It helped me feel hopeful.”

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The brothers met with doctors at a half-dozen of the country’s best hospitals, all with impressive credentials that inspired confidence.

Michael Uvanni was in awe when he visited the University of Texas MD Anderson Cancer Center in Houston, one of the world’s most respected cancer hospitals. It was like seeing the Grand Canyon, said Uvanni, 66, of Rome, N.Y. “You never get used to the size and scope.”

Even the MD Anderson logo on buses and buildings — with “Cancer” , above the words “Making cancer history” — made the family’s battle seem winnable.

“I thought they were going to save him,” said Uvanni, an interior designer.

Patients and families are bombarded with the news that the country is winning the war against cancer. The news media to attract readers. Drug companies promise “a to boost sales. Hospitals woo paying customers with ads that s.

For Uvanni, hope gave way to crushing disappointment when his brother’s health declined and he died from metastatic melanoma in 2014.

“You get your hopes up, and then you are dropped off the edge of a cliff,” said Uvanni. “That’s the worst thing in the world.”

like Uvanni can suffer and if their loved ones are riddled with side effects and don’t survive as long as the family expected, noted Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College.

For decades, researchers have rolled out new cancer therapies with great fanfare, announcing that science has at last found a key to ending one of the world’s great plagues, said Dr. Vinay Prasad, an assistant professor of medicine at Oregon Health & Science University. When such efforts fail to live up to expectations, the cancer world simply moves on to the next big idea.

Hyping early — based on lab tests or animal studies — can attract investors that allow researchers to continue their work. Positive results can lead biotech firms to be bought out by larger drug companies.

“It’s in the interest of almost every stakeholder in the health system to be optimistic about these therapies,” said Dr. Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.

Of course, there is plenty of money to be made.

The U.S. spent nearly in 2014, with patients paying nearly $4 billion out-of-pocket, according to the American Cancer Society Cancer Action Network. Spending on cancer, a disease that most afflicts the aging,

“While many people are trying to make patients’ lives healthier and longer and better, there are others that are exploiting their vulnerability,” said Dr. Leonard Saltz, chief of the gastrointestinal oncology service at New York’s Memorial Sloan Kettering Cancer Center.

Others argue that the excitement about cancer research is justified. A spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry group, said cancer patients have good reason for optimism.

“We continue to see great strides in identifying the genetic mutations and related factors that can drive the seemingly random formation of abnormal cells in cancer,” spokeswoman Holly Campbell said in a statement. “In the last decade, we’ve seen a number of scientific advances transform the landscape of many cancers.”

Promises To Cure Abound

Even the country’s top scientists sometimes get carried away.

In 1998, Nobel laureate James Watson — who co-discovered the structure of DNA — told The New York Times that scientists would “ using drugs that block tumor blood supplies. At that time, the drugs had succeeded only in mice.

In 2003, the director of the National Cancer Institute, Dr. Andrew von Eschenbach, of “eliminating suffering and death due to cancer by 2015” by better understanding tumor genetics.

Last year, when President Barack Obama announced the , which aims to accelerate and better coordinate research, he said, “Let’s make America the country that cures cancer once and for all.”

In a recent interview, von Eschenbach acknowledged he didn’t communicate his goal well.

“We all fall into that trap,” said von Eschenbach, now a senior fellow at the Milken Institute, a health and public policy think tank. “We’re offering what we have, but making it appear that it’s more than what it is.”

It’s easy to see how patients’ hopes are raised, said Timothy Turnham, former executive director at the Melanoma Research Foundation, an advocacy group. Researchers are frequently overly enthusiastic about early discoveries that have little chance of leading to a new drug.

“There is a disconnect between what researchers think is statistically significant and what is really significant for patients,” Turnham said. “Patients hear ‘progress,’ and they think that means they’re going to be cured.”

A Marketing Blitz

Uvanni said his brother’s experience was nothing like the in which smiling cancer patients hug their grandchildren, hike in the mountains and lead dance classes.

A TV commercial for the Bristol-Myers Squibb drug projects the words “a chance to live longer” on the side of skyscrapers, as a captivated crowd looks on. In much smaller type, a footnote reveals that lung cancer patients taking Opdivo lived just 3.2 months longer than others.

A TV ad for Merck’s features reassuring images of a smiling, healthy patient hugging her family — not fighting for breath or struggling to walk. Although the commercial notes that the people in the ad are portrayed by actors, the commercial claims the drug provides “a chance for a longer life. It’s Tru.”

“Your heart sinks when you see those ads,” Uvanni said. Seeing the family depicted in the ad, he said “makes you wonder if they’re going down the same path that we did.”

The Keytruda ad notes that 71 percent of patients given the drug were alive “at the time of patient follow-up,” compared with 58 percent of those who received chemotherapy. The ad doesn’t mention that the “time of follow-up” was 11 months.

“It’s not false; it’s just incomplete,” said pharmacist Harold DeMonaco, a visiting scientist at the Massachusetts Institute of Technology in Boston. “They don’t give patients or the patients’ family enough information to make a reasonable decision.”

In an interview, Merck senior vice president Jill DeSimone said that the company aims to be responsible with its advertising, noting that the Keytruda ad reminds patients to talk to their doctors. “The physician is the ultimate decider on treatment,” DeSimone said.

In a statement, Bristol-Myers’ senior vice president Teresa Bitetti said that Opdivo ads play “an important role in educating patients about new treatment options and fostering informed conversations between patients and their doctors.”

Hospitals also have for overstating their success in treating cancer. In 1996, Cancer Treatment Centers of America, a for-profit chain, settled that “they made false and unsubstantiated claims in advertising and promoting their cancer treatments.”

The company’s current commercials — dozens of which are — boast of offering “genomic testing” and “precision cancer treatment.”

The commercials don’t tell patients that these tests — which aim to pair cancer patients with drugs that target the specific mutations in their tumors — are rarely successful, Prasad said. In clinical trials, these tests have matched only 6.4 percent of patients with a drug, according to Prasad’s . Because these drugs only manage to shrink a fraction of tumors, Prasad estimates that just 1.5 percent of patients actually benefit from precision oncology.

In a statement, Cancer Treatment Centers of America said, “We use national media to help educate cancer patients and their families about the latest diagnostic tools and treatment options. … All of our advertising undergoes meticulous review for clinical accuracy as well as legal approval to ensure we tell our story in an informative and responsible manner, and in compliance with federal guidelines.”

Spending on ads for hospitals that treat cancer soared 220 percent from $54 million in 2005 to $173 million in 2014, according to a . Ads for Cancer Treatment Centers of America accounted for nearly 60��percent of all total cancer center advertising.

Targeting Melanoma

For more than a decade, the Food and Drug Administration approved for metastatic melanoma. Patients typically .

Since 2011, however, the , including several immunotherapies, which aim to harness the immune system to fight cancer. Last year, that the median survival of patients taking the drug Keytruda had grown to two years. Forty percent of patients were alive three years later,��according to the clinical trial, presented at the American Society of Clinical Oncology.

Researchers have tested immunotherapies against a variety of tumors, leading to approvals in lung cancer, kidney cancer, bladder cancer and others.

Such success has led doctors to label cancer immunotherapy as a “.” N­­ewspapers and magazines call it a “.” And hospitals laud them as “.”

Yet these treatments — which were initially assumed to be gentler than chemotherapy — can provoke on the , , and other organs.

And there are no approved immunotherapies for tumors of the breast, colon, prostate and pancreas.

Only about 10 percent of all cancer patients can expect to benefit from immunotherapy, Prasad said.

Uvanni’s brother — who tried immunotherapy, as well as a number of other approved and experimental treatments — survived 3½ years after his diagnosis. That might lead many oncologists to describe his story as a success.

Uvanni sees no reason to celebrate. He wanted more than short-term survival for his brother.

“I thought we were going to have a treatment where we’d at least have a good block of quality time,” Uvanni said.

But treatments meant to control the cancer only made him sick. Some caused flu-like symptoms, with fever, chills and shakes. Others left him nauseated, unable to eat or move his bowels. Others caused dangerous infections that sent him to the emergency room.

“I hope that if something like that happens to me,” Uvanni said, “I would be strong enough to say no to treatment.”

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The doctor recommended a drug called Alecensa, which sells for more than $159,000 a year. Medicare would charge Krahne a $3,200 copay in December, then another $3,200 in January, as a new year of coverage kicked in.

For the first time since being diagnosed 10 years ago, Krahne, now 65, decided to delay filling his prescription, hoping that his cancer wouldn’t take advantage of the lapse and wreak further havoc on his body.

With new cancer drugs commonly priced at $100,000 a year or more, Krahne’s story is becoming increasingly common. Hundreds of thousands of cancer patients are delaying care, cutting their pills in half or skipping drug treatment entirely, a Kaiser Health News examination shows.

One-third of Medicare patients who were expected to use��Gleevec — a lifesaving leukemia medication that costs up to — failed to fill prescriptions within six months of diagnosis, according to a in the Journal of Clinical Oncology.

Leukemia patients aren’t the only ones rationing care.

A 2013 study in found that 24 percent of all cancer patients chose not to fill a prescription due to cost, while about 20 percent filled only part of a prescription or took less than the prescribed amount. A February had similar findings, with about 10 percent skipping medication or taking less than prescribed, and 14 percent delaying filling a prescription.

Given that more than are likely to be��diagnosed with cancer this year, that suggests 168,000 to 405,000 ration their own prescription use.

“Patients are being harmed daily” by high treatment costs, said Dr. Hagop Kantarjian, a leukemia specialist and professor at Houston’s MD Anderson Cancer Center. “It’s causing more deaths than necessary.”

Stopping drugs like Gleevec could be cutting years from some patients’ lives. Instead of dying in five to seven years, patients with chronic myeloid leukemia who take Gleevec and similar drugs can survive nearly as long as anyone else, and with a good quality of life, Kantarjian said.

Given that his lung cancer has grown slowly over the years, Krahne’s doctor thought it would be safe to wait until January to begin his new medication.

“We hope it doesn’t hurt my chance of cure,” said Krahne, from Santa Rosa, Calif. “It was an educated risk that we didn’t take lightly.”

Krahne made repeated calls to patient-assistance programs throughout January, trying to find help with his out-of-pocket costs.

“The anxiety during those days or weeks was probably almost as bad as the day I was diagnosed with cancer,” Krahne said.

Doctors have a term for Krahne’s problem: “financial toxicity.”

“We’re talking about huge numbers of patients,” said Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Center in Seattle.��“It’s an epidemic. And it’s not going away.”

Even patients with good insurance can face a financial crisis when trying to pay for cancer therapy. Medicare pays for the bulk of cancer care in the United States because . And, although it covers a high percentage of the cost, copays for patients such as Krahne can easily reach $10,000 a year, Dusetzina said.

Unlike many commercial plans, Medicare doesn’t set an upper limit on what patients pay out-of-pocket. Patients with chronic lymphocytic leukemia who begin oral medications this year, for example, can expect to have lifetime out-of-pocket costs of $57,000, according to a January study published in the .

High drug costs are a particular problem for the elderly, half of whom have in available assets, and many have more than one expensive chronic condition, such as heart disease, diabetes or emphysema. The median income for people on Medicare was $24,150 in 2014, according to the .

Medicare patients with cancer spend an average of 11 percent of their income on treatment, according to a . Patients who don’t have supplemental insurance, which pays for treatment not covered by traditional Medicare, spend 23 percent of their income on cancer care. Ten percent of elderly patients without supplemental insurance spent 60 percent of their income on cancer expenses.

In John Krahne’s case, persistence finally paid off. After making repeated calls to patient-assistance programs in January, Alecensa’s manufacturer, Genentech, agreed to help pay Krahne’s out-of-pocket costs. He began taking the drug Jan. 27, six weeks after it was first prescribed.

It’s impossible to know whether Krahne’s health will be affected by the delay, said Ramsey.

“Most oncologists are OK with delays of up to a month, but after that they start getting anxious that further delays will harm chances for survival,” Ramsey��said.

When thinking about having to find the money for more than $10,000 in cancer treatment a year, Krahne said: “Hopefully, I won’t have to do this year after year.”

Yet Krahne acknowledged that paying high prices is the cost of surviving cancer today. “So, hopefully, I will have to do this year after year.”

Big-Ticket Designer Drugs

While cancer has always posed a financial hardship for patients, the jaw-dropping costs of new cancer medications have led to widespread criticism of the pharmaceutical industry, on Capitol Hill and beyond.

List prices for oral cancer drugs doubled from 2011 to 2016, rising from an average of $20 for a day’s supply to $40, according to , a pharmacy benefit manager. Six of the 39 cancer drugs on the market in 2010 doubled or tripled in price by 2016; one quadrupled in price; one drug’s price increased eightfold.

Treating melanoma patients with Keytruda, an immune therapy that has led to long-term remissions in some patients, costs $152,400 a year.

Such costs are leading to , who often struggle to help patients decide if drugs are worth the consequence of depleting their life savings, or going into debt or even bankruptcy.

“My job is to prescribe the best treatment,” said Dr. Yousuf Zafar, associate professor of medicine and public policy at the Duke Cancer Institute in North Carolina. “But I’m not doing my job if I prescribe a drug and walk away and leave them with tens of thousands of dollars in immediate debt.”

In a statement, the Pharmaceutical Research and Manufacturers of America, an industry group, noted that drug costs are only one part of the problem. “Many factors contribute to financial hardship for cancer patients … physician services, transportation expenses, and the inability to work, among other medical and non-medical factors, drive the cost burden on patients. We have also seen a rapid rise in the number of health plans with high deductibles for medicines.”

In a statement, officials at Gleevec’s manufacturer, Novartis, noted that the company provided financial aid to 130,000 patients last year, including those struggling to pay for Gleevec.

“We price our medicines to reflect the value they bring to patients and society,” said Novartis spokesman Eric Althoff. “We also continue to invest in new treatments so that we can find ways to make more cancers survivable.”

Patients Go��For Broke

The high cost of cancer medications can burden patients for years even after they finish treatment.

Liza Bernstein, 52, was diagnosed with breast cancer three times from��1994 to 2009. She emptied her savings account after her second diagnosis and gave up her apartment because she couldn’t pay her rent. Bernstein sold some belongings and put the rest in storage, where they remain. She has been living with friends and relatives ever since.

“People say ‘Call this foundation or that foundation’” for help, said Bernstein, a freelance designer and patient advocate in Los Angeles who was unable to work for several years due to her illness. People don’t understand “the cognitive and emotional exhaustion of trying to manage this and wrap your brain around everything you need to do.”

Cancer often limits patients’ ability to hold down a job. Four years after diagnosis, one-third of previously employed breast cancer survivors were unemployed, according to a . Patients who lose a job don’t just lose a paycheck; they often lose their health insurance.

In a 38 percent reported one or more financial hardships as a result of treatment, such as being forced to sell or refinance their home or losing more than 20 percent of their income, even though nearly everyone in the study was insured. Seventeen percent borrowed money from family or friends, at an average of more than $14,000.

Twenty-three percent were in debt 20 months after their diagnosis, with an average debt of $26,860, according to the study. Even patients without severe hardship saw their fortunes change due to cancer, as they sold stocks and drew on savings.

About 3 percent of patients with cancer declare bankruptcy, said Ramsey, whose found cancer patients are 2.7 times more likely to file for bankruptcy than those who’ve never been diagnosed.

Although Bernstein considered declaring bankruptcy, she said she couldn’t afford the $500 to $600 it would have cost for a lawyer and filing fees.

Bankruptcy isn’t just financially devastating.

Mortality rates among cancer patients who filed for bankruptcy are, on average, 79 percent higher than those of other patients, according to Ramsey’s 2016 study in the . Bankruptcy is associated with an especially high risk of death for certain cancers. For example, mortality rates are 2.5 times higher among patients with colorectal cancer who filed for bankruptcy compared with patients who didn’t file.

The financial stress takes a toll on survivors as well. A study published�� found that patients with more financial strain had worse overall health and more pain, depression and impairment compared with those with more resources.

Financially stressed patients may skip pain medications and miss doctor’s appointments. And those who skip taking drugs to relieve nausea and vomiting, Ramsey said, can die from dehydration.

A found that breast cancer patients who stopped taking hormonal therapy earlier than scheduled, or who took less than the prescribed amount, were more likely to die.

Some patients “have to choose between paying their meds and heating their home,” said Carla Tardif, chief executive officer at Family Reach, a New Jersey charity that provides financial aid to families dealing with cancer. “I went into a home and there were two sleeping bags on the kitchen floor. The mom said, ‘We sleep by the stove because I can’t afford the heat.’”

Molly MacDonald, who was diagnosed with breast cancer at age 54, when she was a divorced single mother of five, opted not to undergo reconstructive surgery because of the cost. She worried about the increased risk of infection and hospitalization, which she knew she could not afford.

“All of my decisions were based on cost,” said MacDonald, of Beverly Hills, Mich. “We sold things. I cut the kids’ hair myself. Friends brought food. Then I found myself in line at the food bank. I used to have groceries delivered. It was interesting to find out how quickly someone can find themselves in a place of need.”

In October 2006, after MacDonald got back on her feet, she began soliciting donations for a nonprofit she created called The Pink Fund, which helps to pay breast cancer patients’ bills. The fund now pays about $65,000 in bills a month. “We’ve helped people who are living in storage units, living with their families, living in cars.”

MacDonald often draws from her experience when offering financial advice. Consider selling your house to prevent it from being taken away, she suggests. Remember, that as bad as the situation is, it’s not permanent. But she also asks clients, “What in your house can you sell?”

Correction: This story was updated on March 15 to correctly state��the cost of Keytruda, which is $152,400 a year.

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Although the 73-year-old knows there’s no cure for her disease, she wants researchers to do better. It’s been years, she said, since she has found a drug that has actually helped. McCarthy said she’s frustrated that the Food and Drug Administration is approving cancer drugs without proof that they cure patients or help them live longer.

“That simply isn’t good enough,” said McCarthy, of Coventry, R.I. “I understand [why] that could be satisfactory for some people. It isn’t to me.”

Pushed by patient advocates who want earlier access to medications, the­ FDA has approved a flurry of oncology drugs in recent years, giving some people with cancer a renewed sense of hope and an array of expensive new options. A few of these drugs have been clear home runs, allowing patients with limited life expectancies to live for years.

Many more drugs, however, have offered patients only marginal benefits, with no evidence that they improve survival or quality of life, said Dr. Vinay Prasad, assistant professor of medicine at the Oregon Health and Science University, who has about the FDA’s approval process for cancer drugs.

And those are the successes.

Two-thirds of cancer drugs approved in the past two years have no evidence showing that they extend survival at all, Prasad said.

The result: For every cancer patient who wins the lottery, there are many others who get little to no benefit from the latest drugs.

“We are very concerned about the push to get more drugs approved, instead of effective drugs approved,” said Fran Visco, president of the National Breast Cancer Coalition, who said the last game-changing breast cancer drug, Herceptin, was approved nearly 20 years ago.

In a published in JAMA Internal Medicine, researcher Diana Zuckerman looked at 18 approved cancer drugs that didn’t help patients live longer. Only one had clear data showing that it improved patients’ lives, such as by relieving pain or fatigue.

Two drugs harmed quality of life. For example, thyroid cancer patients taking the most expensive drug, cabozantinib, scored worse on a scale measuring five symptoms: diarrhea, fatigue, sleep disturbance, distress, and difficulty remembering, Zuckerman said.

“Our patients need drugs that provide the greatest possible benefit, particularly when you put that in the context of cost,” said Dr. Richard Schilsky, senior vice president and chief medical officer at the American Society of Clinical Oncology, which represents cancer specialists. “You begin to question what is the real value of a therapy when the benefit is small, the toxicity may be similar to a previous drug and the cost is much higher.”

Cancer drugs approved last year cost an average of $171,000 a year, according to the at New York’s Memorial Sloan Kettering Cancer Center. Although the high prices can lead patients to think they’re getting the Mercedes of cancer drugs, research shows that a medication’s price has .

“We cannot have a system where drugs that may not even work are being sold for these amazingly crazy amounts of money,” said Zuckerman, president of the National Center for Health Research, a nonprofit in Washington that aims to explain research to consumers.

Recognizing the slow pace of progress, the American Society of Clinical Oncology has of extending life or controlling tumors for at least 2.5 months. The bar was set relatively low because “it’s not very often that we come across a transformative treatment,” said Dr. Sham Mailankody, an assistant attending physician and myeloma specialist at Memorial Sloan Kettering.

Yet in a study published in September in , Mailankody found that only one in five cancer drugs approved from 2014 to 2016 met those standards.

Even those slim gains, achieved during carefully controlled clinical trials, can evaporate in the real world, where patients are often older and sicker than those who participate in research studies, said Hanna Sanoff, an associate professor and section chief of the University of North Carolina School of Medicine Gastrointestinal Medical Oncology Program.

Cancer is primarily a disease of aging; 59��percent of patients are over 65 and 30��percent are older than 75. Yet only 33��percent of participants in cancer trials are over age 65 and just 10��percent are over 75, according to a

In a study published in September in Sanoff found that a drug that improved survival in liver cancer by three months offered no survival advantage among Medicare patients outside the clinical trial.

McCarthy, who reviews breast cancer research for the Department of Defense, said she was twice turned down for clinical trials because of her age. When researching experimental therapies, “I’d get excited by something that seemed promising, only to be told I was too old to join the trial, because the cutoff age was 70,” she said.

Lowering��The Bar

FDA officials said there are good reasons why many promising cancer drugs lack evidence of improved survival.

Because some cancers grow slowly, it can take many years for a study to show whether a new drug helps people live longer, said Dr. Richard Pazdur, director of the FDA’s Oncology Center of Excellence. While individual drugs may only modestly improve survival, “when used sequentially or in combination, they can transform a disease,” Pazdur said.

The design of some cancer trials also can make it hard to tell if drugs help patients live longer. That’s because many trials now allow patients in the control group the opportunity to “cross over” to get the drug being studied, if preliminary data suggests it could��help them, Pazdur said. While such crossover benefits people in the study, who are facing a life-threatening disease, it can lead to inconclusive findings.

Lastly, Pazdur said that overall survival rates also don’t reflect the fact that some drugs, such as targeted therapies for lung cancer, allow a subset of patients to do extremely well, surviving for years instead of months.

The number of patients with advanced melanoma who survive five years after diagnosis has increased from 5 percent before the advent of immune therapies to 30 percent to 40 percent today, said Dr. Steven O’Day, director of immuno-oncology and clinical research at the John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, Calif. Immune therapies work by stimulating a patient’s natural immune system to combat cancer cells.

“There is a lot of excitement about these [immunotherapy] drugs, and for good reason,” Schilsky said. “There’s no diminishing the progress that’s been made.”

The FDA wants to give patients the chance to benefit as soon as possible, rather than waiting for definitive proof of improved survival, Pazdur said. In some cases, the FDA requires pharmaceutical companies to perform long-term studies after drugs are approved, to measure whether drugs live up to their early promise.

But many of these studies never provide an answer, Zuckerman said. Once a drug is approved and is available to anyone, patients have no incentive to participate in a clinical trial. So studies can end with no clear conclusion.

In a , Prasad looked at 36 drugs approved without proven survival advantages. More than four years later, only five had evidence of improved survival.

Otis Brawley, chief medical officer at the American Cancer Society, said he’s concerned that the FDA is lowering its standards.

“We’re getting less rigorous scientifically because we want to get these drugs out to people faster,” Brawley said.

Unless the FDA requires companies to provide survival data before approving a drug, “we may never have answers,” Zuckerman said. “We will have all of these expensive drugs on the market and we will never have the information we need about how well they work or even how safe they are.”

President Donald Trump has vowed to cut regulations at the FDA and recently told pharmaceutical industry leaders that he wants to further speed up the drug approval process.

Helpful Or Harmful?

Cancer patients, who are making decisions at a time of intense stress, don’t always understand the full risks and benefits of therapy, Brawley said. Studies suggest that both and drugs’ benefits, but underestimate their risks and side effects.

A study of 2,944 people in found that 39 percent mistakenly believed the FDA only approves “extremely effective” drugs, while 25 percent mistakenly believed the agency only approves treatments without serious side effects.

Even doctors think “we are better than I actually think we are,” Brawley said. “The thought that these drugs could be harmful is foreign to them.”

Patients “see the survival benefit, and of course these are scared, desperate people trying to get themselves any chance they can get,” said Dr. Ellyn Lee, who guides patients about cancer treatments as director of Seattle’s Swedish Palliative Care Services. “However, the survival benefit is not often realized, or it’s three months of misery due to side effects and bankruptcy at the end. Is that really fair?”

One of the biggest recent changes at the FDA is that more drugs are being approved based on “progression-free survival” — medical jargon for the amount of time that patients live while their tumors are under control.

Because small changes in tumor size aren’t always clearly visible on scans, doctors consider tumors to be under control as long as they don’t grow more than 20 percent, Brawley said.

Doctors always hope that a drug that delays tumor growth will help patients live longer. But in a Prasad found that most statistical analyses have found the link between progression-free survival and overall survival to be very weak.

Measures such as progression-free survival “are just a guess as to whether or not the drug actually works,” Brawley said. “The problem with approving a drug based on a progression-free survival is that you don’t know if the drug is actually doing anything positive for the patient.”

Brawley said he’s concerned that patients could be harmed by oncology drugs whose long-term side effects are unknown.

The drug Avastin, which was approved for breast cancer in 2008, without evidence that it improved survival, three years later, after studies showed it did not help people live longer. The FDA concluded that life-threatening side effects, which included heart attacks, bleeding and high blood pressure, outweighed the drug’s benefits.

“There are all these drugs that we used for a long, long time, but we ended up taking them off the market because we finally realized they were harmful,” Brawley said. “We are setting ourselves up for that again.”

McCarthy has been disappointed in the new cancer therapies she’s tried. The last drug that kept her tumors from growing was letrozole, which was approved in 1997. It kept McCarthy’s tumors under control for three years.

In 2015, after her tumors began growing again, McCarthy began a new breast cancer drug, called The FDA approved Ibrance because it improved progression-free survival by 10 months when combined with a standard hormonal therapy. Four months after McCarthy began the drug, however, scans found new bone tumors.

A spokeswoman for Pfizer, Sally Beatty, noted that Ibrance’s proven benefits have improved since then. In a , women taking the Ibrance combination lived 24.8 months with limited tumor growth, compared to 14.5 months for women who took the hormonal therapy alone.

McCarthy opted not to try another breast cancer drug, Afinitor, after doctors warned her that it posed too many risks. The in 2012 because it limited tumor growth for four months longer than placebo.

“That’s nothing to be excited about,” said McCarthy, who has four children and four grandchildren. “I want to live more than four months.”

But keeping tumors in check can be a huge help to patients, said Pazdur, who notes that there are many ways for drugs to help patients, even without extending life. Shrinking a bone tumor, for example, can relieve pain. Shrinking a lung tumor can make it easier for someone to breathe.

“Most patients are pleased if they go to the doctor and the doctor says, ‘Your scan says everything is stable. There are no new lesions,’” Schilsky said. “I’ve given that result to patients many times over the years and they are all happy about it. Are they as happy as they would be if the tumor were gone? Of course not. But being free from progression and otherwise feeling OK is not such a bad outcome.”

As someone with incurable cancer, McCarthy remains frustrated with the pace of progress. Scientists, she said, aren’t asking the right questions.

McCarthy said she wants researchers to focus on prevention of cancer, and to learn why breast cancers like hers can remain dormant for years before suddenly reactivating. Her cancer, which was first diagnosed when she was 44, disappeared for two decades before reappearing in her bones.

“The status quo isn’t good enough,” said McCarthy. “I want us to have a breast cancer vaccine to prevent my granddaughter from getting cancer. I’ll be working for that with my dying breath.”

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Aunque la mujer de 73 años sabe que no hay cura para su enfermedad, quiere que los investigadores se esmeren más. Han pasado años desde que encontrara una droga que la ayudara. McCarthy dijo que se siente frustrada porque la Administración de Drogas y Alimentos (FDA) está aprobando fármacos sin pruebas de que curan a los pacientes o los ayudan a vivir más tiempo. “Entiendo por qué podría ser satisfactorio para algunas personas. Pero no lo es para mí”, dijo McCarthy, quien vive en Coventry, Rhode Island.

Empujados por defensores de pacientes que quieren acceso temprano a los medicamentos, la FDA ha aprobado una ráfaga de drogas oncológicas en los últimos años, dando a las personas con cáncer una renovada sensación de esperanza, y una serie de nuevas y costosas opciones. Pocas de estas drogas han permitido a pacientes con una esperanza de vida limitada, vivir por años.

Sin embargo, muchas otras sólo han ofrecido a los pacientes beneficios marginales, sin ninguna evidencia de que mejoraran la sobrevida o la calidad de vida, dijo el doctor Vinay Prasad, profesor asistente de medicina en la Oregon Health and Sciences University, quien sobre cómo la FDA aprueba drogas para el cáncer.

En general, la supervivencia del cáncer ha cambiado poco en la década pasada. Las 72 terapias aprobadas de 2002 a 2014 les dieron a los pacientes sólo 2,1 meses más de vida comparado con los fármacos más viejos, según un estudio publicado en .

Y esos son los éxitos.

Dos tercios de las drogas para el cáncer aprobadas en los dos últimos años no tienen evidencia que demuestre que extienden la supervivencia en absoluto, agregó Prasad.

El resultado: por cada paciente con cáncer que gana la lotería, hay muchos otros que obtienen poco o ningún beneficio de las drogas más nuevas.

“Estamos preocupados sobre la presión por aprobar más drogas, en vez de aprobar drogas más efectivas”, dijo Fran Visco, presidente de la National Breast Cancer Coalition. Visco observó que Herceptin, la última droga para el cáncer de seno que cambió realmente el juego terapéutico, fue aprobada hace 20 años.

En un publicado en noviembre en JAMA Internal Medicine, la investigadora Diana Zuckerman analizó 18 drogas para el cáncer que no ayudaron a los pacientes a vivir más. Sólo una tenía datos claros que mostraban que había mejorado las vidas de los pacientes, aliviando el dolor o la fatiga.

Dos de esas drogas dañaron la calidad de vida. Por ejemplo, los pacientes con cáncer de tiroides que tomaron el fármaco más caro, llamado Cabozantinib, tuvieron peores resultados en una escala que midió cinco síntomas: diarrea, fatiga, trastornos del sueño, angustia y dificultad para recordar, explicó Zuckerman.

“Nuestros pacientes necesitan fármacos que ofrezcan el mayor beneficio posible, especialmente cuando se lo pone en el contexto del costo”, dijo el doctor Richard Schilsky, vicepresidente senior y director médico de la Sociedad Americana de Oncología Clínica, que representa a los especialistas en cáncer. “Usted comienza a preguntar cuál es el valor real de una terapia cuando el beneficio es pequeño, la toxicidad puede ser similar a un medicamento anterior y el costo es mucho mayor”.

Los medicamentos contra el cáncer aprobados el año pasado cuestan un promedio de $171,000 al año, según el en el Memorial Sloan Kettering Cancer Center de Nueva York. A pesar de los altos precios pueden llevar a los pacientes a pensar que están recibiendo el Mercedes Benz de las drogas contra el cáncer, la investigación muestra que el precio de un medicamento .

“No podemos tener un sistema donde las drogas que ni siquiera funcionan se venden por estas increíblemente dementes sumas de dinero”, dijo Zuckerman, quien es presidenta del Centro Nacional de Investigación en Salud, una organización sin fines de lucro en Washington, DC, que tiene como objetivo explicar la investigación clínica a los consumidores.

Reconociendo el lento ritmo de progreso, la Sociedad Americana de Oncología Clínica ha establecido contra el cáncer: extender la vida o controlar los tumores durante al menos 2,5 meses. El período se estableció relativamente bajo porque “no nos encontramos a menudo con un tratamiento transformador”, dijo el doctor Sham Mailankody, asistente médico y especialista en mieloma en el Memorial Sloan Kettering.

Sin embargo, en un estudio publicado en septiembre en , Mailankody halló que sólo uno de cada cinco medicamentos contra el cáncer aprobados de 2014 a 2016 cumplió con esos estándares.

El cáncer es principalmente una enfermedad del envejecimiento. El 59% de los pacientes son mayores de 65 años y el 30% tienen más de 75. Sin embargo, sólo el 33% de los participantes en los ensayos de cáncer son mayores de 65 y sólo el 10% supera los 75, según publicado en el Journal of Clinical Oncology.

McCarthy, quien revisa las propuestas de investigación sobre el cáncer de seno para el Departamento de Defensa, dijo que fue rechazada dos veces para participar en ensayos clínicos debido a su edad. Al investigar las terapias experimentales, “me emocionaba ver una que parecía prometedora, sólo para me dijeran que era demasiado vieja para participar en el ensayo, porque la edad límite era de 70 años”, dijo.

Contra la opinión de muchos en la comunidad científica, el presidente Donald Trump ha prometido reducir las regulaciones en la FDA y recientemente dijo a líderes de la industria farmacéutica que quiere acelerar aún más el proceso de aprobación de medicamentos.

Oficiales de la FDA dijeron que hay buenas razones por la que falta evidencia de que prometedoras drogas contra el cáncer mejoran la supervivencia.

Porque muchos cánceres crecen despacio, puede tomar muchos años para que un estudio muestre si una nueva droga ayuda a las personas a vivir más, dijo el doctor Richard Pazdur, director del Oncology Center of Excellence de la FDA. Mientras que individualmente las drogas pueden mostrar sólo una modesta mejora, “cuando se usan secuencialmente o en combinación, pueden transformar una enfermedad”, agregó Pazdur.

¿Beneficioso o dañino?

Los pacientes con cáncer, quienes toman decisiones en un momento de tremendo estrés, no siempre entienden todos los riesgos y beneficios de la terapia, dijo Otis Brawley, médico jefe de la Sociedad Americana del Cáncer. Estudios sugieren que ambos, y los beneficios de las drogas, pero a subestimar los riesgos y los efectos secundarios.

Un estudio con 2,944 personas publicado en encontró que el 39% creía erróneamente que la FDA sólo aprobaba medicamentos “extremadamente eficaces”, mientras que el 25% creía equivocadamente que la agencia sólo aprobaba tratamientos sin efectos secundarios graves.

Los pacientes “ven el beneficio de supervivencia y, por supuesto, están asustados, son personas desesperadas tratando de conseguir cualquier oportunidad”, dijo la doctora Ellyn Lee, que guía a los pacientes sobre los tratamientos contra el cáncer como directora de Swedish Palliative Care Services en Seattle. “Sin embargo, el beneficio de supervivencia no siempre ocurre, o representa tres meses de miseria debido a efectos secundarios, y la bancarrota al final. ¿Es eso realmente justo?”.

Uno de los cambios recientes más grande en la FDA es que más medicamentos están siendo aprobados en base a la “supervivencia sin progresión”: frase de la jerga médica que se refiere a la cantidad de tiempo que los pacientes viven mientras sus tumores están bajo control.

Debido a que los pequeños cambios en el tamaño del tumor no siempre son claramente visibles en los escáneres, los médicos consideran que los tumores están bajo control, siempre y cuando no crezcan más del 20%, explicó Brawley.

Los médicos siempre esperan que una droga que retrasa el crecimiento del tumor ayude a los pacientes a vivir más tiempo. Pero en , Prasad encontró que la mayoría de los análisis estadísticos han encontrado que el vínculo entre la supervivencia libre de progresión y la supervivencia general es muy débil.

Medidas como la supervivencia sin progresión “son sólo una conjetura sobre si el medicamento realmente funciona o no”, dijo Brawley. “El problema con la aprobación de un medicamento basado en una supervivencia libre de progresión es que usted no sabe si el fármaco está haciendo algo positivo por el paciente”.

Brawley dijo que le preocupa que los pacientes puedan verse afectados por medicamentos oncológicos cuyos efectos secundarios a largo plazo son desconocidos.

El fármaco Avastin, que fue aprobado para el cáncer de seno en 2008, sin evidencia de que mejorara la supervivencia, tres años después, luego que estudios demostraran que no ayudaba a las personas a vivir más tiempo. La FDA concluyó que efectos secundarios que amenazan la vida, que incluyeron ataques cardíacos, sangrado y presión arterial alta, superaron los beneficios del fármaco.

McCarthy se ha decepcionado de las últimas terapias contra el cáncer que ha tratado. El último fármaco que impidió que sus tumores crecieran fue el Letrozol, aprobado en 1997. Mantuvo a los tumores de McCarthy bajo control durante tres años.

En 2015, después de que sus tumores comenzaran a crecer otra vez, McCarthy comenzó a usar una nueva droga para el cáncer de seno, llamada . La FDA aprobó Ibrance porque mejoró la supervivencia sin progresión a 10 meses cuando se combinó con una terapia hormonal estándar. Pero cuatro meses después de que McCarthy comenzó a usar la droga, exámenes encontraron nuevos tumores óseos.

Sally Beatty, vocera de Pfizer, señaló que los beneficios probados de Ibrance han mejorado desde entonces. En un publicado en noviembre, las mujeres que tomaron la combinación Ibrance vivieron 24,8 meses con un crecimiento tumoral limitado, en comparación con 14,5 meses para las mujeres que usaron sólo la terapia hormonal.

McCarthy optó por no intentar con otra droga, Afinitor, después que los doctores le advirtieran sobre demasiados riesgos. La FDA aprobó Afinitor en 2012 porque limitó el crecimiento de tumores durante cuatro meses más que el placebo.

“No es para emocionarse”, dijo McCarthy, quien tiene cuatro hijos y cuatro nietos. Quiero vivir más de cuatro meses.

Pero mantener los tumores bajo control puede ser una gran ayuda para los pacientes, dijo Pazdur, quien señala que hay muchas maneras de que los medicamentos ayuden a los pacientes, incluso sin extender la vida. El encogimiento de un tumor óseo, por ejemplo, puede aliviar el dolor. Disminuir un tumor pulmonar puede hacer que sea más fácil para alguien respirar.

“La mayoría de los pacientes están contentos si el médico les dice: ‘Su examen dice que todo está estable. No hay nuevas lesiones’”, dijo Schilsky, de la Sociedad Americana de Oncología Clínica. “He dado esa noticia a los pacientes muchas veces a lo largo de los años y todos están contentos. ¿Son tan felices como si el tumor se hubiese ido? Por supuesto que no. Pero estar libre de progresión y sentirse bien no es un mal resultado”.

Como alguien con un cáncer incurable, McCarthy sigue frustrada con el ritmo del progreso. Los científicos, dijo, no están haciendo las preguntas correctas.

McCarthy enfatizó que quiere que los investigadores se centren en la prevención del cáncer, y en entender por qué los cánceres de seno como el suyo pueden permanecer inactivos durante años antes de repentinamente reactivarse. Su cáncer, que fue diagnosticado por primera vez cuando tenía 44 años, desapareció durante dos décadas antes de reaparecer en sus huesos.

“El statu quo no es lo suficientemente bueno”, dijo McCarthy. “Quiero que tengamos una vacuna contra el cáncer de seno para evitar que mi nieta desarrolle cáncer. Estaré trabajando por eso hasta que de mi último aliento”.

La cobertura de KHN del final de la vida y enfermedades graves es apoyada por y la cobertura del envejecimiento y el mejoramiento del cuidado de los adultos mayores es apoyada por .

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