The cancer quandary: improving outcomes as costs explode

Dear Reader,

It long has been the dreaded C diagnosis: Cancer. For many Americans, the memory persists of a dreadful, deadly disease. But medical science has changed that, and, for millions, cancer has become a chronic not a killer condition. Many of us struggle with and survive it.

Still, even in the careful coverage about advances in combatting cancer, there it arises: the dollar sign. Recent reports about impressive results from immunotherapies, though brimming with optimism about getting the body’s own systems to fight back, also include the startling figure about the cost of just one year’s dosages for one patient receiving a mass-produced anti-cancer drug: $150,000.

That’s the growing quandary of cancer−the care for it is improving. Significantly. But the disease’s cost is skyrocketing, too. When patient-consumers are battling for their lives and well-being, how are they supposed to manage their finances to pay for their cancer care, too? Will their health break them and their families financially? This is one of the hardest conversations to carry on. It’s necessary. It needs to be part of the national dialogue about the soaring cost of American health care. But can we be open enough about this challenge to really help those in need?

Photo: electron microscope scan of lung cancer cells

The rising price tag for cancer care

One of the bright spots for American health has to be the falling toll and increasing scientific knowledge about the scourge of cancer.Death rates have declined 23 percent since 1991. That has meant longer lives for some 1.7 million cancer victims in that time. The American Cancer Society reports that “nearly 14.5 million Americans with a history of cancer were alive on Jan. 1, 2014. Some of these individuals were diagnosed recently and undergoing treatment, while most were diagnosed many years ago with no current evidence of cancer.” For millions of people with cancer in the United States, the disease has become one of long-term coping.

It’s also true that cancer, with a half million deaths annually, remains the No. 2 killer in this country, trailing only heart disease. Campaigns have helped to cut smoking and other health banes that contribute to cancer risks. But medical scientists also are learning that increased longevity boosts the prevalence of cancer. As we age, chances rise sharply that some of our cells run amok and create cancerous conditions within us. Cancer, researchers now understand, is an incredibly complex disease. It may involve several different assaults on human systems all at once. It hides in devious, pernicious ways that make recurrence common, and eradication difficult. Although 10 common cancers cause 70 percent of the new incidences of the disease in the U.S., cancer’s exact mechanisms continue to elude researchers.

Doctors have gotten better in treating cancer, chiefly by cutting it out with surgeries, burning it out with radiation treatments, or by chasing it out with chemotherapies. None of this medicine is cheap, with the collective yearly national cost estimated at $124.5 billion in 2015, and expected to rise to $157.7 billion by 2020. Beneath these big numbers is the toll that cancer care takes on individuals and their families:

• Surgical approaches for individual cancers have been estimated to cost on average a total between $14,000 and $56,000;
• Radiation therapies can run between $11,000 and $35,000 on average, depending on duration of treatment and cancer type;
• Chemotherapies go for $11,000 to $102,000, again depending on treatment time, cancer type, and care setting.

And then there are drug treatments for cancer. A recent Mayo Clinic study reported that, “In the United States, the average price of new cancer drugs increased 5- to 10-fold over 15 years, to more than $100,000 per year in 2012,” adding that, “For a patient with cancer who needs one cancer drug that costs $120,000 per year, the out-of-pocket expenses could be as high as $25,000 to $30,000—more than half the average household income and possibly more than the median take-home pay for a year.”

Besides paying for medical care, cancer patients also must come up with the money for out-of-pocket costs, including lost time from work, transportation to frequent appointments, and help they need with chores and responsibilities they can’t cover due to their illness.
Health care experts know that cancer patients, even as they struggle with a fearsome illness, must juggle their money to care for themselves and their families. They often skimp on necessities like food, housing, and education. Many take on crushing debt, with some falling into bankruptcy.

Yes, there’s help. But is it enough?

Photo: electron microscope shot of blue-dyed prostate cancer cells

Billionaires as cancer philanthropists

It’s one of the clearest signs about cancer and its costs. The public discourse about finances and the disease have come to be dominated by dollars denominated in the billions.

President Obama tapped Vice President Biden−who painfully lost his eldest son to the disease−to lead a billion-dollar cancer “moonshot,”a national initiative that the White House says aims to “eliminate the disease as we know it.” The sentiment and support has been welcomed but has drawn criticisms, too.

At the same time, philanthropic funding for cancer research and care has become one of the new and most exclusive clubs for American billionaires. Consider these headline-grabbing gifts:

• Michael Bloomberg, the former New York City mayor and founder of a media and financial data empire with a fortune estimated at almost $50 billion, has joined Sidney Kimmel, the Jones Apparel Group founder with a personal fortune estimated at $1.3 billion, in pledging $125 million for comprehensive cancer research at the Sidney Kimmel center at Johns Hopkins University.
• Sean Parker, a co-founder of Napster and a former leader of Facebook, has put up $250 million of his estimated $2.4 billion fortune to underwrite an eponymous cancer institute with about 300 researchers in 40 laboratories at Memorial Sloan Kettering Cancer Center, the University of Pennsylvania, the University of Texas M.D. Anderson Cancer Center, Stanford, and the University of California campuses in San Francisco and Los Angeles.
• Larry Ellison, the founder of Oracle, has pledged $200 million of his estimated $50 billion fortune for an eponymous “transformative medicine” and cancer research center at the University of Southern California.
• Henry Kravis, a private equity legend with an estimated fortune of $4.8 billion, with his wife Marie-Josée pledged $100 million for an eponymous molecular oncology research center at the Sloan-Kettering Institute in New York.
• And David Koch, the co-controller of a family industrial conglomerate (with brother Charles) with a personal fortune estimated at $42.7 billion, has donated $150 million to Memorial Sloan Kettering so it can build a new outpatient cancer facility on the Upper East Side of New York City. His latest gift ups his total pledged or donated sums to the hospital to $225 million.

The donors variously say their charity stems from their own experiences or of those of loved ones with cancer. Parker also has been explicit about the market potential of advances developed through his initiative. As the New York Times describes it, while “each [participating] academic center will own the intellectual property from its work, the Parker Institute will manage the patents and their licensing to companies. Some of the proceeds will go toward future research by the Parker Institute and be shared by all the academic centers, giving them an incentive to cooperate rather than compete.”

The philanthropists also have said they are stepping in with gifts, partly to speed advances and to provide funding that doesn’t get snagged in the notorious bureaucracy and red tape of medical-scientific research.

Concerns have been voiced in the research community whether the private-public funding and attention, especially to novel therapies, will be beneficial and improve cancer treatment and outcomes or whether these many initiatives will create confusion and work at cross-purposes.

Hope, support, and survivorship

Many of us are rotten about asking for help, even when we need it most. We hate relying on others, and we prize our independence. Talking out loud, and a lot, about money is anathema to most of us. But if you’ve been diagnosed with a serious cancer, the experts have some tough advice: Get over yourself. You’re going to need all the help and support you can get, including on the financial side. For your health’s sake, you’re going to need to talk to a lot of people about a lot of things.

No one owes you help. You will feel awful, often, and you may be in pain. But you will need to push through, to reach out to family, friends, your employer, insurers, medical caregivers, and all the institutions that provide you treatment, especially your hospital. Much of this will be baffling, bewildering, and new. But others have managed and survived it. Go to the support groups. Your faith and your church may matter to you as never before. Loved ones and strangers alike will surprise you with their kindness, help, and insight. You’d do the same if given the opportunity, right?

There’s a sidebar below with some resources, especially on finances. Uncomfortable as it may be, start to ask about what help’s out there for you in caring for your cancer. Your doctor may not be great about informing you fully about your treatment; push for the details. Keep careful notes and records. You may need to be insistent−you may, for example, wish to see if you would benefit if you can qualify for a clinical trial that will provide you with therapies not yet available to most. You will tussle with doctors and their staffs, with bureaucrats who can help you with Social Security, Medicaid, and other benefit programs, and certainly with health insurers; there are productive ways, even though this will be frustrating enough to reduce you to tears at times.

Don’t let the bills pile up and go unanswered. Negotiate with providers. Don’t let yourself get dug in and feeling overwhelmed. Your emotions, mental health, and resilience can affect your cancer outcome, and fear, anxiety, and depression are common effects of the disease. Talk about it with your caregivers and sympathetic ears.

There will be a turning point with the disease, if all goes well. And now you’ll find yourself a survivor who lives with a chronic condition. Those who surround you may not have shared your ordeal, nor will they grasp fully what it means to live with cancer. Americans clearly need new ways to think and talk about the disease−and to better help those with it. Add to that conversation, please.

Resources on cancer finances

Be sure to ask your family doctor, your oncologist, and your hospital about resources that may be available nearby. Here are some national, online options to get cancer patients started with information on the complexities of covering the cost of their care:

• The American Cancer Society has a web page devoted just to managing the costs of cancer treatment. Click here to get to it.
• The American Association for Cancer Research has robust content online about coping with the financial aspects of cancer care. Click here to get to it.
• The American Society of Clinical Oncology, through the cancer.net online site, offers detailed information about navigating the finances of cancer treatment. This includes a download of a 36-page informational booklet. Click here to go to it.
• The Patient Advocate Foundation provides mediation and arbitration services to patients, providers, family members and caregivers of those dealing with significant medical issues. To learn more about its services, click here.

Why you need a med buddy

If you’ve just gotten a cancer diagnosis, you may want to enlist the support of a med buddy, someone or some people whom you trust deeply and who care for you a lot. You may want this individual, or these individuals, to accompany you to your consultations with your oncologist, surgeon, radiologist, or other medical caregiver.

Experts know that cancer therapies, particularly chemotherapy, can be cognitively disruptive. The condition is dubbed chemo brain, and patients find that when they’re receiving powerful medications, they can be foggy, forgetful, and not up to their usual mental sharpness.

You’ll need help and support to overcome this and other changes, which typically can be temporary, as you battle the disease. Research shows that if you stay engaged in your care, and if you have support from friends and family, your health outcomes can be better.

HERE’S TO A HEALTHY 2016!

Patrick Malone
Patrick Malone & Associates