The New York Times’ Tara Parker-Pope reports today on a new study from the The Journal of Clinical Oncologythat could provide validation to many cancer survivors suffering from the thinking and memory problems that doctors often dismiss as normal signs of aging.
The new study suggests that the cognitive losses associated with cancer treatment (a.k.a. “chemo brain”) are far more pronounced and longer-lasting than previously thought.
“It’s clearly established now that chemo brain does exist and can continue long-term,” said Karen L. Syrjala, co-director of the Survivorship Program at Fred Hutchinson and the study’s lead author. “The real issue here is that recovery from cancer treatment is not a one-year process but a two- to five-year process. People need to understand the extent to which the cells in their bodies have really been compromised by not only the cancer, but also the treatment.”
“The first step is to set realistic expectations for people,” said Dr. Syrjala. “It’s not just patients, but their families and employers who need to realize that their brains aren’t processing as rapidly.”
A study published April 27 in the Journal of the National Cancer Institute discovered that what Medicare will pay for greatly determined whether or a certain type of radiation therapy was used for treating breast cancer.
Research has shown that the treatment — intensity-modulated radiation therapy (IMRT) — reduces acute skin toxicity and burns in patients, but is significantly more expensive than alternative and more harmful treatments, which makes it controversial whether the treatments justify Medicare reimbursement.
This study evaluated Medicare data from 2001 to 2005 and observed that the billing for IMRT increased more than 10-fold (from 0.9 percent to 11.2 percent of patients). The average cost of radiation within the first year of diagnosis was $7,179 without IMRT and $15,230 with IMRT.
IMRT billing was five times higher in geographical areas covered by Medicare carriers compared to uncovered areas, which led the authors to suggest that “with respect to breast radiation therapy, much of the variation in cost can be directly attributed to inconsistent treatment definitions and reimbursement rates authorized by Medicare and its intermediaries.”
In an accompanying editorial, the authors conclude that this study “appears to confirm the suspicion of many, both within and outside of the healthcare industry, that medical decision making is too heavily influenced by reimbursement rather than medical necessity.”
African-Americans with liver cancer are 36% less likely than white patients to receive a liver transplant for the disease, according to a new study published in the journal Cancer — as well as 36% more likely to die within five years of their diagnosis.
“This treatment is expensive, high tech and on the rise — just the kind of perfect storm that leads to a disparity in care,” said study researcher Dr. Anthony Robbins of the American Cancer Society.
The study suggested several factors that contribute the disparity:
High out-of-pocket costs: In 2006, billed costs for liver transplant surgery were nearly $450,000 during the first year. African-American families generally have lower wealth and assets compared with white families at similar levels of income.
Less access to care: African-Americans are less likely to have health insurance and less likely to have access to care at early stages of the disease.
Lack of trust in the medical system: Even after controlling for clinical and sociodemographic factors, studies of surgical treatment of other cancers have consistently found lower rates of surgical treatment among African-American patients.
The study’s authors concluded:
Despite limitations, the results of the current study provide substantial evidence that there are large and persistent racial/ethnic disparities in the use of LT for HCC [hepatocellular carcinoma] in the United States. These disparities were not explained by sociodemographic or clinical factors, although insurance status was found to be an important independent predictor of LT use as well as survival.
Although the causes of racial/ethnic disparities in the receipt of LT for HCC are complex and likely to be difficult to change, the current study results suggest that a major benefit of reducing or eliminating these disparities in the receipt of LT may be a substantial reduction in or even the elimination of the racial/ethnic survival disparities observed among patients with HCC.
Although the BRCA gene family accounts for 40-60% of hereditary breast cancers, yet despite recent commercialization of genetic screening, several confounding barriers persist in preventing access to this potentially life-saving resource.
According to a 2009 article in The Breast Journal: “Most major private insurance carriers, as well as Medicare and many Medicaid programs, now cover most or part of the cost of BRCA1⁄2 testing in appropriate patients. However, several recent studies have shown lower rates of BRCA1⁄2 counseling and testing among minority populations.”
The study outlined both racial/ethnic and socioeconomic barriers to genetic services:
Cost: At roughly $3000, the cost of comprehensive BRCA1⁄2 analysis is prohibitive. Even with insurance, patients could still pay more than $300 in out-of-pocket costs for testing, in addition to possible counseling fees.
Lack of Insurance:As of 2007, Hispanics had the highest uninsured rate for health insurance (32.1%), followed by Blacks (19.5%), Asians (16.8%), and non-Hispanic Whites (10.4%).
Medicare/Medicaid restrictions: Blacks and Hispanics are also more likely to have state ⁄federal health insurance (Medicare ⁄Medicaid), as opposed to private insurance. Compared with private insurers, Medicare ⁄Medicaid have more stringent eligibility requirements for genetic testing and can deny coverage to patients who might otherwise be covered by a private insurance plan.
A2010 study also published in The Breast Journal in 2010 found further correlations between race, income and the likelihood of obtaining genetic screening services, noting that:
Caucasian women, those with a graduate school education, people making over $100,000, and people with a family history of breast cancer were significantly more aware of breast cancer susceptibility genes than other socioeconomic groups
Subjects aware of genetic testing are more willing to utilize counseling.
For a more personal (and hilariously direct) take on the subject, check out this video by genetic testing advocate and filmmaker Joanna Rudnick, in which she asks a pharmaceutical honcho straight up, “How can you patent a gene?”
A 2009 meta-analysis published in the Journal of the American Medical Association found that cancer survivors are 1.37 times more likely to be unemployed, compared to their healthy counterparts. Interestingly, survivors in the U.S. were also 1.5 more likely to be employed than survivors in Europe. Across all the studies, the employment rate for cancer survivors was 34%.
Increased risks for unemployed were identified for survivors of breast cancer, gastrointenstinal cancers, and cancers of the female reproductive organs. (Survivors of blood cancers, prostate cancers, and testicular cancer did not show higher rates of unemployment.)
Why are so many cancer rates so far? “The mechanism behind the higher unemployment rate among cancer survivors is likely to be a higher disability rate,” the authors conclude. According to the study, cancer patients were 2.84 times more likely than control participants to be disabled and unable to work or to receive disability benefits.
The World Health Organization estimates that “most, if not all, pain due to cancer could be relieved if we implemented existing medical knowledge and treatments.”
In the developing world, however, 5.5 million people with terminal cancer die unnecessarily painful deaths because they lack access to basic, inexpensive pain drugs such as morphine.
A 2010 Human Rights Watch editorial presents a vivid picture of this suffering, positing that “the failure of governments to take steps to ensure access to pain medicines is a violation of their obligation to fulfill the right to health,” and “can also be a violation of the prohibition of torture and cruel, inhumane and degrading treatment.”
Human Rights Watch researchers determined that millions of unnecessary painful deaths could be prevented in governments took even the basic most basic low-cost steps in three areas WHO has deemed essential to quality palliative care:
Education of healthcare workers about palliative care and pain management;
Ensuring availability of morphine and other strong pain medications;
Developing government policies related to palliative care and pain management.
And yet, in India, Human Rights Watch researchers “found that more than half of the country’s government-supported regional cancer centers do not offer pain management or palliative care, despite the fact that more than 70 percent of their patients have advanced cancer and need pain treatment….The result is that many thousands of patients are abandoned to excruciating pain even though the government had clear means to prevent their suffering.”
In the United States, white women have the highest incidence rate for breast cancer, but black women are most likely to die from it. —National Cancer Institute
Why is this so? According to the NCI, it’s likely because African-American women disproportionately suffer from:
a lack of medical coverage,
barriers to early detection and screening, and
unequal access to improvements in cancer treatment.
In addition, recent NCI-supported research indicates that aggressive breast tumors are more common in younger black and Latino women living in low SES areas. This more aggressive form of the diseases is less responsive to standard cancer treatments and is associated with poorer survival rates.
The bottom line? Many people are dying from cancer not because we can’t cure them, but because they’re poor.
A 2009 study published in The American Journal of Medicine contains some sobering statistics about the high prevalence of medical-related bankruptcy over the past decade. Among the study’s findings:
62.1% of all bankruptcies in 2007 were medical; 92% of these medical debtors had medical debts over $5000, or 10% of pretax family income. The rest met criteria for medical bankruptcy because they had lost significant income due to illness or mortgaged a home to pay medical bills.
Between 2001 and 2007, the share of bankruptcies attributable to medical problems rose by nearly 50%
Three-quarters of medical debtors had health insurance, but many suffered gaps in coverage:
77.9% of the individuals whose illness led to bankruptcy had health insurance at the onset of the bankrupting illness; 60.3% had private insurance.
69% of debtor families had coverage at the time of their bankruptcy filing
60% of families had continuous coverage
Only 0.3% of the uninsured went without coverage voluntarily, i.e. because they though they didn’t need it — most others couldn’t afford it.
Most medically bankrupt families were middle class before they suffered financial setbacks —60.3% of them had attended college and 66.4% had owned a home; 20% of families included a military veteran or active-duty soldier.
Among medical debtors, hospital bills were the largest medical expense for 48%; drug costs for 19%, doctors’ bills for 15% and insurance premiums for 4%. In 38% of cases, lost income due to illness was a factor.
A 2010 report produced by Livestrong and the American Cancer Society found that cancer has the largest economic impact compared to any cause of death in the world — including HIV/AIDS and all other infectious diseases.
Some key findings from the report:
In 2008, the total economic impact of premature death and disability from cancer was $895 billion (not including the the direct costs of treating cancer) a figure which represents 1.5% of the world’s GDP
The economic cost of cancer and is nearly 20% higher than heart disease, which at $753 billion, is the cause of death with the second-largest economic impact
The cancers which account for the largest number of healthy life years lost were lung cancer (15.5%), stomach cancer (9.6%), and liver cancer (8.6%)
In the United States, The National Institutes of Health estimated the overall cost of cancer at $263.8 billion in 2010. That figure includes:
$102.8 billion for direct medical costs
$20.9 billion for indirect morbidity costs (cost of lost productivity due to illness)
$140.1 billion for indirect mortality costs (cost of lost productivity due to premature death)
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One of the clearest signs that health care coverage as know it is broken is the fact that cancer costs can spell financial ruin even for those lucky enough to have health insurance at the time of their diagnosis.
1. High cost-sharing, caps on benefits and lifetime maximums leave cancer patients vulnerable to high out-of-pocket health care costs. The various types of cost-sharing and limits on benefits found in some insurance plans may quickly lead to high out-of-pocket costs once cancer treatment begins.
2. People who depend on their employer for health insurance may not be protected from catastrophically high health care costs if they become too sick to work. While cancer patients who are unable to work can usually continue their employer-sponsored insurance coverage for up to 18 months by paying the full premium, that additional cost can be a substantial burden since these patients are typically living on a reduced income.
3. Cancer patients and survivors are often unable to find adequate and affordable coverage in the individual market. Patients and survivors who lose their jobs, decide to change jobs, or otherwise lose their group insurance can be denied coverage in the individual market because of a cancer diagnosis and can ultimately be left uninsured.
4. While high-risk pools are designed to help cancer patients and others who are uninsurable, they are not available to all cancer patients and some find the premiums difficult to afford. Not all states offer coverage through high-risk pools, and when this coverage is available it remains much more expensive than most other plans in the individual market.
5. Waiting periods, strict restrictions on eligibility, or delayed application for public programs can leave cancer patients who are too ill to work without an affordable insurance option. When cancer patients are too sick to work, they may qualify for Social Security Disability Insurance income and, after two years of receiving this income, they can qualify for Medicare coverage. During this two-year waiting period, these patients are typically living on a reduced income and may not be able to afford private insurance coverage. Cancer patients with low incomes who are unable to afford comprehensive private insurance may not qualify for Medicaid due to limits on eligibility, leaving them without adequate, affordable coverage.
The report also does a great job of allow cancer survivors to tell their powerful stories in their own words:
Keith always made sure he paid for health insurance and got annual physicals. But now that he is fighting stomach cancer and paying high health insurance costs, he had to cash out his 401K and has amassed thousands of dollars in medical debt.
Jamie had health insurance through her job at a nursing home, but once she was diagnosed with breast cancer, she quickly exceeded her plan’s annual cap and now has about $30,000 in debt. She sometimes receives three calls a night from collection agencies regarding her medical debt.
Thomas’ prostate cancer was diagnosed early and eradicated with surgery in 1999. due to his past cancer diagnosis, he had trouble finding coverage after he retired, and he now pays about one-quarter of his income toward his health insurance.
See this table from the report and the accompanying videos for more examples of individual cancer survivors and their experiences with private health insurance.
African-Americans with liver cancer are 36% less likely than white patients to receive a liver transplant for the disease, according to a new study published in the journal Cancer — as well as 36% more likely to die within five years of their diagnosis.
The World Health Organization estimates that “most, if not all, pain due to cancer could be relieved if we implemented existing medical knowledge and treatments.”
The Cost of Cancer 