Cancer

HEALTH CARE: Time for a Serious Discussion

Health Policy — Fri, 06 Nov 2009 15:06:00 -0500

We just posted on some of the measures within the House and Senate bills that may help lead us to improved care for people at the end of life. Here, Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., returns as a guest poster to tell us what it all means for his patients -- and the doctors who treat them. Byock, the author of Dying Well, has written for us before about the need to think more broadly about what kind of changes we need in our health care system -- and our communities -- to do a better job of caring for sick and frail people trying to get by in their homes.

It's back. The provision that ignited histrionic accusations of Democratic Death Panels and a Newsweek cover about Killing Granny has been resurrected, (so to speak) tucked away on page 641 of H.R. 3962, the House's Affordable Health Care for America Act. Section 1233 would reimburse doctors for a voluntary discussion with patients about their preferences for care at the end of life. Over the summer, Chairman Max Baucus excluded such a provision from the Senate Finance Committee's health reform bill at insistence of ranking Republican, Sen. Charles Grassley. This made little sense then, and even less now that bipartisanship has collapsed.

As I scanned this 1990 page legislation, I thought of a Sarah (a pseudonym), a patient, who is a granny herself. Sarah is generally fit, the result of a healthy diet and a habit of walking five or more miles daily. So, despite her 82 years, it was a shock to her to be diagnosed with colon cancer with a metastatic tumor in her liver. When I saw her in clinic and asked if she had an advance directive, she protested, "But the oncologist said he could cure me!" True, with a combination of chemotherapy and surgery, Sarah has a chance of being cured. Still, it is fair to describe her condition as life-threatening. Yet, neither her internist, nor the oncologist, gastroenterologist, surgeon, or radiation oncologist she has seen since being diagnosed has brought the subject up.

I explained that I expected that she would do well with treatment, but that at our cancer center, we routinely ask all our patients about advance directives. We believe that discussing people's values and treatment preferences and, at a minimum, knowing who they want to speak for them if they become critically ill are components of good medical care. I hoped to reassure her by sharing that I have an advance directive. So does every adult in my family.

Recently, I introduced this topic in a medical school class on palliative care and clinical ethics. In addition to recounting my discussion with Sarah, I told the students that my two daughters, who are in their late twenties, also have advance directives. A few of the students chuckled nervously. Young adults, after all, tend to think they are invincible. Medical students are no exception.

Responding to the chuckles, I pointed out that history shows otherwise. In 2005, we all watched the Terri Schiavo case. I can't bear the thought of one of my daughters being critically ill. The only thing worse would be having a judge or elected officials meddle in our family decisions and her treatment. So when my daughters asked what I wanted for Father's Day that spring, I requested that each of them fill out an advance directive.

That got more laughs in the lecture hall. Yet this is deadly serious. The very cases that have framed American ethics and law on medical decision-making -- Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo -- were all young women in apparently good health. You don't have to be dying for these discussions to matter. You just have to be mortal.

Without an advance directive, even society's most powerful members could get dragged into a drawn out legal mess at the end of their lives. Under state law in New Hampshire, where I live and practice, if Sen. Baucus or Sen. Grassley were to suffer critical injuries in an accident, their families would not have statutory authority to speak for them -- unless an advance directive on record specifically gave them that power. Otherwise, a court, the New Hampshire legislature -- or as in the Schiavo case, the U.S. Congress -- might weigh in on whether and how long life support should be maintained.

I teach physicians-in-training that it is their responsibility to talk about advance directives with all adult patients, no matter whether these conversations are reimbursable or not. Yes, it can be uncomfortable for both doctor and patient. That's no excuse. I wonder if the senators' doctors have raised the issue with them during routine health visits. If not, why not? It is time doctors and legislators faced this issue like responsible professionals.

COVERAGE: Poor and Uninsured Wait for Lung Cancer Treatment (And We Don't Mean In Canada)

Joanne Kenen — Tue, 03 Nov 2009 16:57:00 -0500

We get really tired of hearing foes of health reform go on and on about waiting lists in Canada and how it's rationing... And how nobody in the United States lacks care because they can always go to the emergency room. We know that yes, people in other wealthy industrialized countries sometimes wait for elective procedures, but here in the United States people -- particularly the poor and the underserved or the uninsured -- do plenty of waiting and postponing even when lives are at stake. (And how many people do you know who get cancer diagnosis, surgery, chemo, radiation and follow up care in their local ER?)

The American Cancer Society has made the point during the health care debate that uninsured and underinsured people get diagnosed later and die sooner. A new study in the Journal of Thoracic Oncology (which we read about on Health News Daily) found that the length of time a newly diagnosed lung cancer patient has to wait for treatment depends in part on whether they are treated at a public (safety net) or private hospital, whether they are insured, their age, and their race.

Researchers at the University of Texas Southwestern Medical Center analyzed data on 482 patients diagnosed with non-small cell lung cancer. They found that 59 percent of patients treated at a public hospital had advanced (stage 3) lung cancer, compared with 37 percent of patients treated at a private hospital. They also found differences in patient populations at public and private hospitals in terms of age, race and socioeconomic status. This is a lethal disease, and earlier detection can't always save lives. But the prognosis by stage three is pretty grim.

"This study demonstrates that in a contemporary U.S. health-care system, intervals among suspicion, diagnosis and treatment vary widely and are predominately associated with system variables such as insurance and hospital type," said study author Dr. David E. Gerber. "An organized and timely approach to subsequent diagnostic and therapeutic measures may benefit these individuals and reduce this health-care disparity."

Disparities are very complicated and the health reform legislation won't wipe them out overnight, although it will help. But health reform will address a lot of the life and death inequities about coverage -- who gets timely care and who does the waiting.

HEALTH REFORM: Color it Pink

Allison Levy — Tue, 27 Oct 2009 14:00:00 -0400

As U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius emphasizes, "One in eight women will have breast cancer at some point in their life but fewer women are dying from it because of medical advances in detection and treatment." But we still have many problems to address -- including the out of pocket costs of cancer care, and the difficulties cancer patients have in getting ongoing insurance coverage with a dreaded "pre-existing condition." Health reform can help, a fact underscored by all those pink outfits and accessories last Friday at an American Cancer Society Cancer Action Network White House Breast Cancer Awareness event .

Breast cancer is the second leading cause of death for women with cancer, but many women don't get regular exams. The Department of Health and Human Services reports that in 2005, 67 percent of women aged 40 and older had a mammogram within the past 2 years -- a fall in screening since 2003. There are complex reasons for that -- but insurance and cost is part of the picture.

The National Cancer Institute (NCI) just released an updated booklet, Understanding Breast Changes: A Health Guide for Women that encourages women to:

Follow-up with their health care providers about any breast changes
Address and understand their breast cancer screening results
Learn about follow-up tests that diagnose breast changes
Learn about specific breast changes and treatment
Be reassured that most breast changes, even "abnormal" changes, are not cancerous
Track personal and family medical history
Find emotional support if necessary

As we've written about several times before (here and here), health reform needs to work for women. In 2009 alone, 192,370 American women will be diagnosed with breast cancer, and 40,170 will die. A study by Health Affairs indicates that in 2007, breast cancer patients with employer-based insurance had annual out-of-pocket costs averaging $6,250 -- this is higher than annual out-of-pocket costs of asthma, diabetes or high blood pressure patients. (To compare, the Commonwealth Fund reports that in 2007, all adults with employer-based insurance faced an average of $729 in out-pocket-costs.)

And remember -- those are women lucky enough to have coverage. At the Breast Cancer Awareness event Friday morning, organized by First Lady Michelle Obama and Dr. Jill Biden, several breast cancer survivors spoke of the challenges they face finding coverage. Joni Lownsdale, 46, explains that while she is seven years past her initial breast cancer diagnosis, and her physician tells her that she has just a five percent chance of recurrence, cancer made her uninsurable. Watch Joni Lownsdale tell her story:

The health care system needs to work for the people who need it the most, when they need it the most. Science and innovation have enabled us to detect and treat cancer; however, resources need to be more accessible and affordable. Health reform is critical in the fight against cancer. Women (or men for that matter) should never have to choose between their health or their finances.

HEALTH REFORM: A Cancer Tragedy Reminds Us Why We Need Coverage for All

Allison Levy — Mon, 05 Oct 2009 14:56:00 -0400

We get so caught up following the health reform goings-on in Washington that we sometimes forget how desperately important it is to real people -- like cancer patients. Health reform will only be as good as its ability to improve the health and welfare of all Americans -- including those who are sick or who have been sick.

Emphasizing patients over politics, the American Cancer Society Cancer Action Network asked Dan Brodrick of Gainesboro, Tennessee to tell his story. Watch it here:

Dan and his wife, Sharon, lost their health insurance more than 10 years ago when Dan lost his job. Sharon tried to find health coverage but was denied by several companies due to a pre-existing condition unrelated to cancer. Uninsured, she didn't get the timely medical care she needed. She was then diagnosed with stage IV cancer of the small intestine and passed away just over a year ago. Her husband lost his wife -- and their life savings.

The health care system fails sick people like Sharon. It fails the people that need it the most when they need it the most. And it fails their families and loved ones. An ACS CAN study of national health spending data found that only 7 in 10 cancer patients had "adequate" insurance. Nearly 10 percent were uninsured, and 18 percent underinsured.

Health reform wouldn't wipe out cancer. But it would make sure that people have coverage, regardless of their age, income, job status or health history. Health reform would ensure that people can get preventive care to reduce the risk of cancer and get appropriate screenings for early detection of cancer. And then the treatment they need if they do get cancer.

Health reform means fewer tragedies like the Brodricks'.

HEALTH CARE: How the Lion Helped the Lambs

Joanne Kenen — Wed, 26 Aug 2009 21:52:00 -0400

For me this is a season of hope -- new hope for a justice and fair prosperity for the many, and not just for the few -- new hope.

And this is the cause of my life -- new hope that we will break the old gridlock and guarantee that every American - north, south, east, west, young, old - will have decent, quality health care as a fundamental right and not a privilege.

Edward Moore Kennedy, August 25, 2008

Much will be made of the fact that Ted Kennedy died without seeing the "cause of his life" come to fruition. Much should be made, too, of his prodigious accomplishments in expanding access to care, corralling the power of government to combat lethal disease, and striving to have a health system that embraced the sick, the weak, the poor, the hurt, and the vulnerable.

If we were a foreign policy blog, we could go on and on about his accomplishments in war and peace and diplomacy. If we were a legal blog, we could talk at length about his expansion and protection of Americans' rights and the quality of our jurisprudence, the assistance and protection offered to victims of crimes. If we were an education blog, we could expound on how he fought for opportunity and equality for poor children, from early childhood right through college.

But we are a health care blog. And looking at his record on health, it's hard to know where to even start.

Ted Kennedy as a young senator worked to realize the dreams of a slain brother by helping to create Medicare and Medicaid. He went on, a year later, to fund the network of community health clinics that today serves 20 million underserved.

He helped draw the battle lines in the "war on cancer." And in ensuing years fought to make sure that everyone had the same access to the care that saved two of his children, one stricken by bone cancer as a teen, the other with lung cancer as a young adult (see video below).

He was a force behind the Ryan White Act, which low-income, uninsured, and underinsured people with HIV/AIDS and their families.

He helped create COBRA, enabling people to continue insurance coverage after losing their job -- and of the Health Portability and Accountabity Act, which lets people keep coverage after changing jobs.

He co-created SCHIP -- the State Children's Health Insurance Program -- covering millions of low income American children. He championed nutrition programs for Women, Infants and Children.

Years of work on health information technology contributed to a significant step toward modernizing our health care system in this year's stimulus package.

He helped lead the fights for the Americans with Disabilities Act, and for job training that helped disabled people attain a degree of independence. He fought for stem cell legislation, and mental health parity. He took on the tobacco industry -- and eventually won.

He rebuilt a damaged public health sector, with both bioterror and pandemic legislation, and if we have a flu epidemic this winter and get through it relatively intact, that too will be part of his legacy.

Above all, he never abandonned his vision of an America where we all mattered. Where we were all cared for. Where we cared for one another.

I wrote a story a few years ago about how many senators suffered terrible personal tragedies, tragedies that belied their image of privilege and protection. And as I interviewed those senators, one after another -- conservative and liberal, young and old -- told me stories about how Teddy Kennedy had been among the first to reach out to them, to commiserate, to console, to give hope.

And that's what he leaves us with. An age-old vision. And a new hope.

HEALTH IT: Redrawing the Cancer War Battle Plan

Joanne Kenen — Thu, 21 May 2009 16:07:00 -0400

Hundreds of thousands of patients undergo cancer treatment each year, using all sorts of combinations of drugs and treatments and therapies. Not all are in clinical trials—but many of them have something to teach us. We linked to Gooznews touching on this topic a few months ago. Now Merrill Goozner has a longer analysis at Science Progress of how, in part because of advances in health IT, we could tap this untapped pool of knowledge:

A redrawn battle plan—one that focuses on turning the treatment system into a research and learning system that can teach oncologists the best use of the weapons they already have—is long overdue...

…Many of the nation’s 30,000 oncologists are engaged in what could be described as an unobserved and uncontrolled science experiment, especially when it comes to treating the 560,000 Americans who die each year from the more than 100 forms of the disease. As these patients’ cancers advance, their physicians try regimens they read about in journals or hear about from colleagues. The outcomes are never gathered. The data is never analyzed. And the findings are never disseminated.’

The economic stimulus package should help us expand our use of HIT. Goozner says we also have to encourage doctors and scientists to be more accepting of retrospective analysis of treatment data, not just the proverbial gold standard of double-blind clinical trials. But we should be able to harvest some of that knowledge and disseminate findings much more quickly than we do today. The National Cancer Institute has already begun creating that learning system through the Cancer Biomedical Informatics Grid, known as caBIG. The goal: not just broad findings about this drug or that, but fine analysis of which subgroups of dozens of kinds of cancers respond best to which specific treatments or combination of treatments. And rather than limiting and impersonalizing choices, this could move us toward “personalized” medicine.

COVERAGE: Why Cancer Society is Pushing for Health Reform

Joanne Kenen — Mon, 27 Apr 2009 22:54:00 -0400

"If we can fix health care system for cancer patients, we will fix it for millions of others."

That's the mantra of the American Cancer Society Cancer Action Network, which plans on spending $3 million on advertising and grassroots organizing in the next couple of months to push for comprehensive health reform. The cancer society is all too well aware of how the system fails sick people, particularly sick people who have little or no health insurance. For starters, they are more likely to die—even if their cancer is detected early.

ACS CAN released a poll Monday that showed how scary cancer can be. Not the disease. The bills.

Of the 1000 people surveyed, four in 10 said they didn't think they would be able to afford cancer treatment if they got sick. One in five said it's likely that they or someone in their household would lose health coverage in the next year. One in seven have delayed a cancer screening test in the past year because of cost (and the proportion was higher in lower income groups).

A recent ASC CAN study of national health spending data found that only 7 in 10 cancer patients had "adequate" insurance. Nearly 10 percent were uninsured, and 18 percent underinsured.

"Lack of access to quality, affordable health care is a barrier for far too many Americans, and is often a death sentence for people with cancer and other life-threatening chronic diseases," said John R. Seffrin, the CEO of both the cancer society and ACS CAN.

Moving this deeply into policy advocacy is relatively new for a disease group, but Seffrin and Daniel Smith, president of ACS CAN, said they are quite optimistic that we are on the brink of "something big." For the cancer society, the big goals are covering everyone while improving the care they receive, with a particular emphasis on prevention, screening and wellness, as well as better palliative care and pain control on the other. Seffrin expressed outrage that significant numbers of nursing home patients dying of cancer don't get anything stronger than an over-the-counter pain pill. We can do a lot better, he said, and it would only cost "chump change."

Earlier this year, the ACS and the Kaiser Family Foundation issued a report on how even insured people with cancer ran into tremendous economic obstacles. Smith said some of the patients featured in that report would spend a day lobbying Congress in May, a few weeks before Senate committees aim to begin work on health reform legislation.

Smith said the cancer group had a much more visible role than in the failed 1993–94 health reform efforts. "We have a voice and a seat at the table—at a lot of tables around town."

COSTS: Cancer Costs and Cancer Drugs

Joanne Kenen — Wed, 18 Feb 2009 21:30:00 -0500

We recently blogged about a report by the American Cancer Society and the Kaiser Family Foundation on the costs of cancer. More specifically, we wrote about how vulnerable even people with health insurance can be when they get a serious and costly disease like cancer.

Merrill Goozner, a blogger and author whose work we like reading, commented that we should have written more about the reasons cancer costs are so high, especially the pricey new drugs. At the Kaiser event itself, he had also raised a very intriguing point about how to glean knowledge from ongoing cancer treatment, which can be a sort of a trial and error affair for individual patients. The goal is to harness that clinical experience so we can do a better job treating other patients with a similar disease and trajectory, or as he put it, how we can "turn cancer care into a learning system." We'll come back to that in a moment.

We blog about the connections between cost, coverage and quality frequently. But we also have focused on the limitations of health insurance, and the growing problem of "underinsurance." That's worth remembering as we enter a national debate about how to expand coverage. Coverage needs to be meaningful. Insurance doesn't really "insure" if sickness means bankruptcy. As Karen Pollitz, a Georgetown University health policy researcher and a cancer survivor herself, pointed out at the Kaiser-Cancer Society discussion, "the average amount of medical debt that sinks a family is less than $12,000." In other words, it isn't necessarily because of the newest and coolest (and costliest) drugs. She said a $25 co-pay for radiation five days a week for seven weeks ($875) can be the tipping point—or drowning point—for an underinsured lower-income working family that is paying out-of-pocket health costs and may also be losing wages because of illness and family care-giving responsibilities. As Pollitz said,

You have a lot of other problems when you're seriously ill. You're depressed. You need more help at home. You maybe need help with transportation. There are many, many, many stresses on a family and that $12,000 bit of extra medical debt, $1,000 a month, can you right over the edge and that's what does it for families.

(Only slighty off topic—Washington Post recently published this article on resources for families coping with cancer costs.)

That being said, we were quite interested in what Merrill said about registries of treatment data. We aren't experts on oncology, but we do know that, particularly with advanced cancers, doctors often try several combinations of drugs before they hit on something that may defeat or at least slow down the cancer in an individual patient. Obviously giving doctors more knowledge about the right mix of drugs for a specific type of tumor would give patients better odds, minimize exposure to toxic drugs and save money. We had just begun looking for something to read to learn more about this when Gooznews posted a piece, based in part on a recent Institute of Medicine forum on "assessing and improving value in cancer care." He urged the FDA to:

[A]ctively support the creation of registries where physicians in community practice would have to report the on- and off-label use of anti-cancer drugs and the patient results. These databases could then be used by researchers to evaluate the actual clinical effectiveness and side effects of drugs that in their initial approval or published off-label trials were either marginally effective or signaled safety problems.

Some believe that advances in early detection (see this recent Wired cover story on the research) or personalized medicine that will tell us a lot more about the characteristics of a specific tumor will at some point make a lot of this moot. We can already do some testing to tell us which breast and colon tumors will not respond to certain of the new drugs. But we don't really know when the great leap forward, in detection or tumor typing, will come. Maybe more quickly than we dare hope. Maybe more slowly than some would have us believe. So in the meantime, we need to make sure that cancer patients have insurance that will truly insure them, while we also make sure that scientists have the tools they need to discover how to best treat them.

COST: Mortgages Make Risky Health Care Piggy Banks

Joanne Kenen — Tue, 25 Nov 2008 19:56:00 -0500

A few weeks ago we wrote about a small study indicating that health costs had contributed to the mortgage meltdown which in turn has wrought havoc with the entire global economy; it found that 49 percent of foreclosures had a health-spending factor (and keep in mind that people miss work or lose their job—and their insurance—when they or a family member become seriously ill) Today's Wall Street Journal takes a look at people squeezed between paying for medical bills or the mortgage. The Journal didn't come up with a firm number of how many foreclosures are health related—except that it's a lot.

Just how many people are being forced to choose between home and health care is hard to tell. Freddie Mac, the big government-sponsored home-loan investor, says illness appears to be a growing reason homeowners with some of the company's 12 million mortgages are falling behind in payments. Illness was the chief cause for 15% of Freddie Mac's delinquencies in the first half of this year, behind such reasons as loss of income and too much debt. Although that percentage is down from previous years, the actual numbers are higher because more people are delinquent on their loans.

Hospitals tend to be more willing to work out payment plans than banks; medical providers usually have to get a court order to put a lien on a home.

Consumer advocates usually advise patients that they should not refinance a mortgage or use home-equity loans to pay medical bills, but of course some people do just that when faced with persistent bill collectors. With housing prices falling, however, it's harder (and riskier) to do that. As Susan Harris, 46, told the newspaper, she was self-employed and uninsured when she was diagnosed in 2003 with liposarcoma, a type of cancer. She cashed out her retirement funds and turned them over to the hospital, qualifying for Medicaid as she spent down her assets. But she still had $26,000 in hospital bills that Medicaid didn't cover, and that amount kept growing as more bills piled up. She refinanced her home last year and paid $28,000 on medical bills. She just had yet another operation to remove cancer from her lung. But this time her house, with its falling value, can't be her medical piggy bank.

"I will once again be cancer free, but over my head in debt," she told the paper. "There's no more money in my house to mortgage it again."