Statement of Stephen Finan, Associate Director of Policy, American Cancer Society
Testimony Before the Subcommittee on Health of the House Committee on Ways and Means
April 16, 2008
Good morning, Mr. Chairman and distinguished members of the Committee. My name is Stephen Finan, Associate Director of Policy for the American Cancer Society. The American Cancer Society is a nationwide, community-based, voluntary health organization, dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy, and services.
Thank you for inviting the American Cancer Society to testify. As you may know, ACS, and its sister advocacy organization the American Cancer Society Cancer Action Network (ACS CAN) are working together to elevate the issue of access to care and its impact on cancer patients and their families by educating the public and policymakers about problems in the health care system and the need for change. We look forward to working with this subcommittee as you work toward solutions to improve and expand access to quality care.
This morning you are listening to other speakers on the panel describe the problem of availability of health insurance. Although we fully share that concern, I would like to take this time to shed light on the under-appreciated, and at times overlooked, problem of adequacy of insurance. I would like to paint a picture — all too common in America — of how cancer patients and survivors with inadequate insurance face barriers and financial burdens in getting the quality health care they need to fight their dreadful disease.
Doreen’s Struggle with Inadequate Insurance Coverage
Let me begin our discussion of inadequate insured by sharing Doreen’s story with you. Doreen, a 57 year-old former medical office receptionist, was diagnosed with Stage IV breast cancer in the fall of 2005. The cancer metastasized to her spinal column, liver, lungs, and left femur. Doreen and her husband, a retired New York City police officer, have health insurance through his retirement plan. The insurance covers 30 outpatient visits a year, a number Doreen quickly exceeded after beginning treatment for her cancer. After she reached this annual limit, she was billed $5,000 a week for chemotherapy treatments. In less than a year, Doreen and her husband owed more than $100,000 to the hospital for her treatment. By the time Doreen’s insurance company informed her that she had exceeded her maximum number of outpatient visits, she had already made additional visits the plan would not cover. Fortunately for Doreen, she spoke at an American Cancer Society event about her inadequate insurance and the story ran in the Long Island Newsday. Upon reading the article, the insurer reversed the decision and paid Doreen’s medical bills in full. While Doreen’s story turned out well, countless others are not as fortunate to have a platform to share their story.
It was stories like Doreen’s and the countless stories of uninsured Americans’ struggle with this dreadful disease that brought the American Cancer Society to the conclusion that we had to enter the broader national debate about access to care.
Defining Adequate Health Insurance
As defined by the Society, adequate health insurance ensures timely access to the full range of evidence-based health care services (i.e., rational, science-based, patient-centered) — including prevention and primary care — necessary to maintain health, avoid disease, overcome acute illness, and live with chronic illness. These services include the complete continuum of evidence-based cancer care for treatment and support needs including clinical trials. Coverage should be comprehensive and protect the individual from incurring catastrophic expenditures.
Little Help Available for Those with Inadequate Insurance
The stories we are giving you come from our Health Insurance Assistance Service (HIAS), which is a service offered through the American Cancer Society’s National Cancer Information Center (NCIC). HIAS is a free resource that connects callers with health insurance specialists who work to address their needs. The specialists at NCIC handle inquiries about health insurance, coverage dynamics, and state programs — all specific to the caller’s needs. To date HIAS has captured almost 16,000 cases from 32 states, with plans to expand the program to other states.
The volume and type of calls received are captured as part of an internal database that allows for analysis of trends and emerging issues. While the database is not systematic or representative of all Americans, the volume and type of calls we receive identify serious problems that exist in our insurance system today. A recent analysis of the cases in the database revealed interesting information about cancer patients who have inadequate health insurance. In general, the Society is able to assist 1 in 6 cancer patients who contact HIAS about their health insurance problems. In the cases where we were unable to help the cancer patient, we can identify barriers in the current health insurance system facing cancer patients.
HIAS receives calls from individuals who are uninsured, those who are transitioning between plans, and cancer patients who are currently insured. Many of these callers are people who have been recently diagnosed or who are in treatment for cancer.
The problems we have specifically identified among those with inadequate insurance include:
- Annual or lifetime benefit limits within the plan that results in the patient not being able to access further cancer care without incurring medical debt.
- No or limited coverage within the plan for out-of-network specialists, limiting the patient’s ability to access quality cancer care.
- No or limited coverage within the plan for prescription drugs or treatments.
- Mounting, affordable co-pays or co-insurance.
For these callers, there is seldom help available to solve their problems. Unfortunately, there are few safety net options for the under-insured.
The biggest single issue is related to cost-sharing being too high. Nearly two-thirds (63%) stated cost-sharing as their primary reason to call HIAS. These callers had trouble meeting deductibles, paying their co-insurance for prescription drugs and treatment, and covering costs for physician visits and non-network specialty care.
Martha’s Financial Struggle With High Cost-Sharing
I would like to share a story from HIAS of a cancer patient who was insured and struggled financially because of the high cost-sharing for covered benefits. Martha, a 63 year-old retired woman, was diagnosed with Stage I breast cancer in November 2007. For her cancer treatment, Martha had surgery followed by radiation. Martha is now post-treatment, but still needs periodic follow-up visits to her oncologist to monitor for recurrence. Martha has a health insurance policy, but the policy is inadequate for her needs. For example, the insurance paid $1,000 of a $10,000 hospital bill for her surgery. Martha said she is $28,000 in medical debt due to her cancer diagnosis, and the hospital is threatening her with a collection agency. Martha lives in a state that has a medically underwritten individual insurance market, so it is unlikely she would be offered another policy. Martha beat her cancer, but now she is struggling with keeping her head above water financially.
Patients Interrupting Treatment Because of Inadequate Coverage
Some of the most disheartening kind of stories we hear come from people who have had to interrupt their treatment because of inadequate coverage. Nearly 900 of the cases logged in the last year have involved cancer patients interrupting their treatment, meaning they elect to stop their treatment before it has been completed. Please think about this for a moment — these are people who stop treatment for a deadly disease because they cannot afford to pay. The consequences of this decision could be detrimental to their health and may very well be a life or death situation.
Another common problem we see involves pre-existing condition restrictions on coverage. Although this is an access problem, it can also be viewed as an adequacy issue. If the caller has a current cancer diagnosis or a history of cancer, insurers may limit their coverage by imposing a pre-existing exclusion period. These exclusions eliminate all coverage for cancer-related health care for the duration of the exclusion period — usually 6-12 months, but sometimes permanently, depending on the coverage type. Pre-existing condition exclusion periods are a leading reason why HIAS callers do not enroll in coverage options available to them. They cannot afford to pay for premiums without receiving coverage for their cancer.
Let me share a story illustrating the adequacy problems related to the exclusion of pre-existing conditions. Thomas, a 35 year-old married father of three, was diagnosed with testicular cancer in March 2004. At the time, he was insured able to get the appropriate care to successfully treat his cancer with surgery and radiation. Thomas’ wife called HIAS because Thomas was without insurance and needed follow-up care to ensure his cancer remained in remission. Thomas could not receive the follow-up tests, which cost more than $2,500, without insurance or a means to pay. Since his remission, Thomas started his own business and lost his previous coverage. He attempted to get coverage in the individual market, but due to medically underwriting he was denied several insurance policies. Thomas was eligible for the state high risk pool; however, Thomas said the 12 month pre-existing exclusion period renders this option not viable. Thomas remains uninsured and unable to access the follow-up care to monitor his health.
Cancer and the “Under-Insured”
The problem of paying costly medical bills affects middle-class families, particularly those with chronic diseases such as cancer. Often insurance policy deductibles, co-payments and limits on health services may leave cancer patients without access to the timely, lifesaving treatment they need. Cancer patients may have to deal with major financial burdens because of out-of-pocket costs in addition to their cancer diagnosis. We receive calls everyday from cancer patients with these problems and published research is available that supports these problems of inadequate and unaffordable insurance as illustrated through the HIAS stories.
A recent study analyzing data from the Medical Expenditures Panel Survey (MEPS) shows the breadth of this kind of financial problem. The MEPS household survey, sponsored by the Agency for Health Care Research and Quality (AHRQ), collects information from the non-elderly, non-institutionalized U.S. population. The survey asks American families questions about health insurance coverage, health care utilization, and health care expenditures. In this study, the researchers defined “under-insured” as people with insurance spending 10 percent or more of their tax-adjusted family income on health care services, including insurance premiums. Nearly 1 in 3 (28.8 percent) cancer patients who are insured have an out-of-pocket health care burden that exceeds 10 percent of their family income. More than 1 in 9 cancer patients with insurance have out-of-pocket health care burdens exceeding 20 percent of their family income in health care expenditures.
Cancer patients who have inadequate coverage have higher medical costs and must deal with the additional stress of financial instability. A survey of cancer patients and their families found that one in five cancer patients with insurance uses all or most of their savings when dealing with the financial costs of cancer. Another study found that more than one in five people with chronic conditions have problems paying medical bills. Furthermore, the incidence of burdensome out-of-pocket spending among low-income, privately insured people with chronic conditions is rising dramatically.
Medical debt has been an important cause of bankruptcy filing in the US. An analysis of national survey data found nearly six of ten adults who had current-year difficulty paying medical bills and 70 percent of those reporting medical debt said they were insured at the time their problems began. Another study examined the causes of bankruptcy and found that 1.9-2.2 million Americans experienced bankruptcy related to medical problems in 2001. Among those with illnesses that led to bankruptcy, their out-of-pocket costs average $11,854 and three-quarters had insurance at the time of their diagnosis.
Despite having insurance, many cancer patients and survivors experience major financial burdens. The situation of the “under-insured” is difficult to measure because wide variation exists among health insurance plans and people do not realize they are “under-insured” until they have a health crisis such as cancer. Furthermore, studies like the one I previously mentioned use a narrow definition to measure the number of “under-insured”—that is, they do not include those who stop or delay treatment because they will not be able to afford it. While we use these studies to talk about the “under-insured,” they do not fully capture the nature and extent of the problem.
American Cancer Society’s Commitment to Access to Care
Our testimony this morning focused on the issue of adequacy, but the American Cancer Society is also greatly concerned about the problems of the uninsured, which the other witnesses this morning are addressing.
We have made significant progress in recent years in addressing the cancer problem. Cancer death rates have decreased by 18.4% among men and 10.5% among women since the early 1990s. Despite this significant progress, the American Cancer Society realizes that its long-term goals of reducing the incidence and mortality of cancer cannot be achieved unless the gaps that exist within the current health care system are addressed. The challenge lies in the fact that our health care system is not up to the task.
A recent American Cancer Society study of 12 types of cancer among more than 3.5 million cancer patients dramatically demonstrates the problem of access today for uninsured cancer patients. The study found uninsured patients were significantly more likely to present with advanced stage cancer compared to patients with private insurance. The study found consistent associations between insurance status and stage at diagnosis across multiple cancer sites. Compared to patients with private insurance, uninsured patients had significantly increased likelihoods of being diagnosed with cancer at more advanced stages. The greatest risk for diagnosis with moderately advanced cancer (stage II) instead of the earliest stage (stage I) was in colorectal cancer, while the highest risk for diagnosis at the most advanced stage of cancer (stage III/IV) was in breast cancer. The study shows that too many cancer patients are being diagnosed too late, when treatment is more difficult, more expensive, and has less chance of saving lives.
We know that individuals and families who are uninsured or have inadequate insurance often go without preventive care despite research showing that early detection and timely treatment are effective in improving outcomes.
We know that cancer patients who are uninsured or have inadequate insurance often do not receive necessary and appropriate treatment in a timely manner, and that they have worse health because of these problems.
And we know we cannot meet the American Cancer Society’s goals of reducing cancer mortality by 25 percent and cancer incidence by 50 percent by 2015 if we don’t achieve greater improvements in our nation’s coverage and health care delivery systems.
The recognition of these problems for cancer patients led the American Cancer Society to decide to enter the broader national debate on health care reform. Last year, the Society developed evidence-based principles defining meaningful health insurance to be adequate, available, affordable, and administratively simple without regard to health status or risk. These guiding principles, known as the 4As, are essential to any health care reform.
Cancer death rates are decreasing and we know what we must do as a nation to defeat cancer. Much of the public debate today is about the need to cover the 47 million uninsured, and the American Cancer Society fully shares that concern. However, we need to recognize more fully the very significant problem of underinsurance. Health plans vary enormously in their deductibles, co-pays, benefits covered, and exceptions. Insurance plans are written in very detailed legalistic language that very few lay people can begin to comprehend, and the summary plan documents that are provided to enrollees almost never begin to convey the adequacy of coverage. Put another way, if you were to look at an array of plans that might be available to you as a consumer, and you were to ask, what would be the adequacy of your coverage if you were to be diagnosed with cancer or some other serious disease, you would probably conclude that you have no idea whether the plan would be adequate. As we see all too often in our HIAS cases, people often discover after their diagnosis what their plan really means—at that is a point where for most patients it is virtually impossible to change coverage. As an appendix to my testimony, I am including additional stories that highlight the problems of the inadequately insured.
In adopting our principles for meaningful health insurance—our 4As—we said that adequacy should cover the full array of necessary services, from early detection through treatment and survivorship, but we did not attempt to define the specifics of an adequate plan. Rather, our goal is stimulate a public discussion that will lead to a broad consensus. We want to raise the issues through the campaigns this year and carry the discussion forward at the federal and state level as legislative reform efforts are developed. We believe the science and the knowledge exist to provide quality health care for all Americans, but we must work together to restructure our coverage and delivery systems to achieve that goal. Your hearing today is a valuable contribution to that discussion.