2009 Policy Priorities
As Congress and the presidential administration consider major healthcare reform, NCCS will collaborate with other organizations to develop and advance a patient-centered approach to cancer care that responds to the needs of cancer survivors. NCCS considers a cancer survivor to be anyone living with, through, and beyond a cancer diagnosis.
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:
- Cancer patients should have access to:
- Care that adheres to practice guidelines and evidence-based standards of care;
- Coordinated and comprehensive cancer care that assures proper treatment of the symptoms and side effects of cancer and cancer treatment;
- 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 and the intent of therapy;
- An assessment of their psychosocial needs and referrals to resources; and
- Palliative and end-of-life care, including but not limited to hospice care of adequate scope and duration.
- 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.
-
- Patients should not face unreasonable and unnecessary delay in obtaining access to new cancer therapies that may offer them meaningful therapeutic advances.
- Healthcare reform must provide cancer patients access to health insurance without pre-existing condition restrictions and must guarantee issuance and renewability of insurance.
- Health premiums, deductibles, co-payments, and coinsurance must not impose an unreasonable financial burden on cancer patients. Cancer patients should have access to health insurance at community rates and have the benefit of subsidies, if necessary to purchase insurance coverage.
To learn how you can support these issues, sign up for news and action alerts.
Appropriate access to safe, effective therapies for cancer
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.
In December 2006, the FDA proposed new rules for expanded access programs in response to a citizen petition filed by NCCS and the American Society of Clinical Oncology (ASCO). The petition requested refinements in patient access programs so that all participants – patients, physicians, and drug sponsors – would have greater clarity regarding the standards for these programs. NCCS encourages the agency to complete the regulatory process and implement the proposed rules.
Enrollment in clinical trials
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 is 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, and supporting legislation that would enable patients to receive coverage of the costs of routine care even when enrolled in a clinical trial.
Get more information about clinical trials from the National Cancer Institute (NCI) or in the NCCS Resource Guide.
