NCCS considers a cancer survivor to be anyone living with, through, and beyond a cancer diagnosis. NCCS has been monitoring proposed legislation and regulations and providing input on proposed policies with a potential impact on cancer survivors and the health care and health care coverage they may receive. This is especially important as the Administration implements the health care reform legislation, the Affordable Care Act (“ACA”), and Congress considers changes to Medicare and other health care programs, as well as possible funding cuts for health care programs.

NCCS continues to collaborate with other organizations to develop and advance a patient-centered approach to cancer care that responds to the needs of cancer survivors. NCCS will engage in legislative and regulatory initiatives, as well as meetings of experts and advisory councils, that aim to accomplish one or more of the following goals:

2011-2012 Policy Initiatives

Ensuring access to health insurance for quality care for cancer survivors

NCCS is actively engaged in implementation of the Affordable Care Act in our efforts to protect the needs of cancer patients. In this process, NCCS has commented on elements of multiple interim final rules, proposed rules, and guidance documents that relate to cancer patients’ access to care through Affordable Care Act.

NCCS will focus on areas including insurance market reforms, preventive benefits, health insurance exchanges and qualified health plans, appeals and external review, and summary of benefits and coverage.

Ensuring a high-quality, patient-centered system of cancer care

NCCS will promote reforms of cancer care delivery and payment to ensure care planning and coordination and will participate in collaborative efforts to measure and report on cancer care quality.

NCCS will expand its involvement in health information technology initiatives to foster the coordination of care and the development of healthcare learning systems.

Removing other barriers to quality cancer care

Foster a system of cancer product regulatory review that is evidence-based and efficient and encourage patient education, health delivery, and payment systems that ensure quality care, including cancer medication adherence and appropriate utilization of cancer diagnostics.

NCCS utilizes a variety of forums for discussion and action on of a wide range of issues, with special emphasis on healthcare reform implementation, delivery system reform, development of  targeted cancer therapies and the diagnostics to support their utilization and the regulatory and payment systems to support approval and delivery of quality cancer care.

Quality, Comprehensive Cancer Care

Cancer patients should have access to:

• Care that adheres to practice guidelines and evidence-based standards of care;
• Comprehensive cancer care that assures proper treatment of the symptoms and side effects of cancer and cancer treatment;
• Coordinated care with strong communication among all the providers and the patient, supported by modern health information technology;
• A written care plan detailing all elements of cancer care;
• Care in a clinical trial, if it represents a potential treatment option;
• Honest discussion with their physicians regarding prognosis, the intent of therapy and the patient's values and preferences regarding care;
• An assessment of their psychosocial needs and referrals to resources;
• Palliative and end-of-life care, including but not limited to hospice care of adequate scope and duration;
• Their personal health information, including their electronic health records; and
• Robust health information systems that support and improve all other aspects of quality cancer care.

Survivors who are ending active therapy and beginning a period of survivorship should have access to:

• A treatment summary and survivorship care plan that details the schedule for monitoring their health status and obtaining follow-up care;
• Services for monitoring of health status and the risk of complications and second cancers; and 
• Coordinated care for complications of cancer and its treatment and for second cancers, without fear that their cancer diagnosis will disqualify them from future health insurance coverage.

NCCS continues to advocate for passage of federal legislation that would encourage the use of cancer care plans as one tool to ensure that these essential components of quality survivorship care are delivered.

Accessible, Affordable Comprehensive Coverage

The National Coalition for Cancer Survivorship (NCCS) has been advocating for quality cancer care for nearly 25 years, and, since the Patient Protection and Affordable Care Act was signed into law on March 23, 2010, has given voice to the needs of cancer survivors during the implementation of the law. NCCS understands that:

• It is important to maintain the protections under healthcare reform that assure cancer patients access to health insurance, limit pre-existing condition restrictions, prohibit premium variation based upon health status, and guarantee renewability of insurance.
• Health premiums, deductibles, co-payments, and coinsurance must not impose an unreasonable financial burden on cancer patients. Cancer patients (and others who meet income tests) should have the benefit of subsidies, if necessary to purchase insurance coverage, as provided under the ACA.  NCCS will continue to advocate that that these and other insurance affordability protections remain in place.
• ACA requires insurers to issue benefit packages that include “essential health benefits” and includes some basic requirements for what insurance plans must include.  However, many of the details of these requirements, including whether important benefits for cancer patients and survivors must be included, will be spelled out in regulation. NCCS testified before the Institute of Medicine concerning the definition of “essential health benefits” and will continue to monitor its development and advocate for the inclusion of benefits important to cancer patients and survivors.
• NCCS has filed comments with the Secretary of Health and Human Services offering our advice on planned rules defining essential health benefits under the Affordable Care Act. We recommended that EHB should regard cancer as a chronic disease and that those diagnosed with cancer should receive care planning and coordination services. The final bulletin included a number of positive changes that addressed a number of NCCS’ concerns.

NCCS continues to advocate for policies that support cancer patients’ ability to have access to affordable and comprehensive health insurance coverage.  

Access to Safe and Effective Therapies

NCCS supports a system that ensures efficient review of new therapies so they can reach patients promptly, once safety and efficacy are proven. We support an approach to access to unapproved therapies that balances the treatment needs of individual patients and the preservation of the clinical trials system.

• Patients should not face unreasonable and unnecessary delay in obtaining access to new cancer therapies that may offer them meaningful therapeutic advances.
• Patient access to unapproved therapies should balance the treatment needs of individual patients with the preservation of a robust clinical trials system. Neither individual patients nor the overall system of cancer care will be served by commercializing drugs that have not been proven safe or effective.
• On August 12, 2009, FDA announced changes to the rules governing access to investigational therapies, broadening them and including clarifications for the patient and the treating physician, while still seeking to preserve the integrity of clinical trials. Previously, NCCS and the American Society of Clinical Oncology (ASCO) filed a citizen petition requesting refinements in patient access programs so that all participants – patients, physicians, and drug sponsors – would have greater clarity regarding the standards for these programs. The FDA rules included a number of positive changes that addressed a number of NCCS’ concerns.

Clinical Trials Access and Enrollment

For many cancer patients, the best therapies are available only through participation in a clinical trial. Unfortunately, access to clinical trials is often limited by several factors including that they are not raised by the doctor as an option, insurance companies refuse to cover routine medical costs, or patients lack understanding about them.

• NCCS working to overcome these barriers by encouraging physicians to enroll patients in trials, collaborating in well-designed initiatives to educate patients about clinical trial opportunities.
• ACA included a requirement that insurance companies cover the costs of routine care when patients are enrolled in a clinical trial.  NCCS supported and advocated for this provision. This requirement becomes effective in 2014. (There is a narrow exception for some plans that elected not to change benefits and thus be exempted from this other requirements.)  NCCS will monitor the implementation of this and other benefit related provisions.

Cancer Research

Despite the difficult economic and fiscal climate, NCCS believes that it is critical that medical research continue in the areas of cancer prevention, treatment and survivorship.  NCCS therefore supports ongoing and strong funding to the National Institutes of Health and the National Cancer Institute to encourage increased research into cancer prevention, treatment, and survivorship.

In addition, NCCS supports action to expand the involvement of advocates in research planning and review, to ensure that the needs of cancer patients and survivors are considered in the process. NCCS also encourages Congress to define standards for transparency and accountability in government, to assure that research dollars are spent effectively and wisely.

NCCS is collaborating with other advocacy organizations to support initiatives that would strengthen research on pain and pain management and foster more attention to this extremely important, but sometimes neglected, component of cancer care.