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Cancer Survivorship: State Policy Issues

Updated August 2006

The following is an exerpt from the NCSL publication, Cancer Survivorship: State Policy Issues, published by NCSL and available here.

Introduction
A diagnosis of cancer once almost certainly meant a death sentence. Although it remains the nation’s second leading cause of death, many cancers now are treatable if detected early. According to the American Cancer Society, about 564,830 Americans are expected to die of cancer in 2006. This is equal to more than 1,500 people per day. This disease is common enough that about 43 percent of American males and 39 percent of American females will be diagnosed with some type of cancer in their lifetimes. Although variations exist by cancer type, the relative survival rate of people with cancer has increased from 50 percent between 1974 and 1976 to 64 percent between 1995 and 2000.1 Advancements in screening and treatment technologies enable earlier detection and more successful treatment options for people who have been recently diagnosed.

U.S. cancer death rates are highest among African Americans, compared with other racial and ethnic groups, primarily because of lack of access to early detection and treatment services. Figure 1 illustrates incidence of cancer in the United States.

More than 10 million cancer survivors live in the United States today—three times the number who were alive 30 years ago. Many survivors and their families experience long-term physical, emotional and practical needs resulting from cancer that affect their quality of life. Because people now are surviving longer after cancer diagnosis and treatment, cancer is less likely to be a death sentence, although it remains a difficult experience. Advances in treatment options and early detection have played roles in allowing those with cancer to lead full lives during and after treatment. The cancer “survivorship” concept includes the physical, emotional and practical issues that come during and after a cancer diagnosis.

However, more people face the rest of their lives with a new perspective and new challenges associated with being a cancer survivor. Everyday situations may be more difficult for those with a cancer history. For example, insurance companies may deny individuals coverage for cancer-related illnesses if these illnesses are deemed “preexisting conditions.” Special diagnostic tests for cancer may have higher copayments than regular doctor visits or testing procedures. Survivors may need time off from work for continued treatments to prevent cancer reoccurrence or manage pain. All these issues and others make a cancer diagnosis even more difficult to manage.

Policymakers who are aware of these cancer survivorship issues are better able to make informed policy decisions.

The topics in the Cancer Survivorship booklet provide some examples of key policy issues related to cancer survivors:

• Cancer as a Chronic Disease
Cancer no longer is treated as an episodic condition. It can affect the survivor and family members for the rest of their lives because of the disruptions it may cause to the person’s lifestyle. Direct and indirect side effects from treatments may forever change a person physically and mentally. Future health is also a concern because cancers may be in remission or recur in different forms. People with cancer may have life-long concerns for their health and health care options. Much is being done to reduce the prevalence of cancer at both state and federal levels.
State and Federal Activities are highlighted in the publication.

• Comprehensive Cancer Control Plans
Cancer plans provide roadmaps for states to address cancer control, including survivorship issues. As of April 2006, 48 cancer control plans existed, including 44 state plans, three tribes/tribal organizations and the District of Columbia. Figure 2 shows the states with Comprehensive Cancer Control Programs and their current funding status. The CDC supports state efforts not only with funding, but by offering a variety of resources and assistance.

• Health Insurance
Treatments for the after-effects of cancer can be technical and expensive, and not all insurance plans cover all treatments, follow-up care, clinical trials, or prescription drugs for people who are considered “survivors.” Those with individual level coverage may have difficulty keeping and maintaining coverage. Some treatments and clinical trials are not covered by all health insurance policies.

• Employment
Cancer does not occur in a vacuum. People usually need to maintain their financial responsibilities while they receive treatment. They can be faced with difficult questions such as, “What about my job? Will I get fired? I need my job to keep my insurance.” According to the Kaiser Family Foundation, at least 34 percent of uninsured adults and 11 percent of insured adults have been contacted by a collection agency about a medical bill, and 7 percent of the uninsured and 3 percent of the insured have declared bankruptcy because of medical costs in the last five years. Other research computes bankruptcy rates from medical expenses as high as 46.2 percent.11 Group health insurance policies often cover people without consideration of their previous health issues. For those who have individual coverage, keeping and maintaining coverage may be more difficult.

• Pain Management Policies
Pain is one of the most common and most feared symptoms of cancer. Cancer survivors may experience both acute and chronic pain following their treatment. State laws, regulations, and guidelines—such as drug control laws and health professional regulations—can encourage or impair the quality of pain management.

• Support, Family and Infertility Issues
People with cancer need a wide range of support from their family, friends and the community. Many other issues can affect cancer survivors. Emotional issues may be a significant part of aftercare for cancer survivors.

• End-of-Life Issues
Facing the possibility of death from cancer is difficult. When the goal changes from cure to comfort, hospice and palliative care are effective options to address physical or emotional pain and suffering.

Conclusion
Recent advancements in cancer screening and treatments have proven valuable for millions of cancer patients and cancer survivors. Public policies may encourage or prohibit further advancements or access to the latest care and treatments. Although cancer survivors are more likely to return to their jobs and families, they are forever changed by their experiences. Legislators may have a different view the role of public policies after they consider the issues of cancer survivors and their families.

For additional information, please refer to the full publication, available at: http://www.ncsl.org/bookstore/productDetail.htm?prodid=0166606

Resources

Note: List may not be comprehensive but is representative of the state laws that exist. NCSL appreciates additions and corrections.
More Resources: NCSL Cancer Information or Lance Armstrong Foundation.

This publication was made possible through a cooperative agreement with the Lance Armstrong Foundation (LAF), which seeks to inspire and empower people who are affected by cancer.  Please see www.livestrong.org for more information.

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