by Lisa Schlager, Vice President of Policy and Community Affairs
Value and access to appropriate health care is of vital importance to patients and their families, particularly as cancer diagnoses continue to rise—up more than 20 percent in the past decade—and health care costs steadily increase. In this environment, more attention is being paid to health care costs and assigning “value” to specific treatments, procedures, tests, and services. Recently, two prominent professional societies, the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN), began a dialogue involving multiple stakeholders, and proposing solutions to some of the challenges facing the U.S. health care system.
This issue is of great importance to our community. People and families affected by hereditary cancer shoulder a disproportionate cancer burden, and our community has unique needs in regard to screening, prevention, and treatment for cancer. Given the need for better methods of prevention and screening, and targeted therapies that are developed specifically for people with certain inherited genetic mutations, appropriate care is not necessarily the same as that for patients in the general cancer community. As organizations begin exploring these issues and proposing solutions that could result in health care policies and laws, considering the needs and concerns of consumers is critical. For this reason, FORCE has been closely following and engaging in the discussions surrounding value in cancer care.
ASCO suggests that value in cancer care is achieved when “patients receive the right treatments, at the right time, for the right price.” The society formed its Task Force on the Cost of Cancer Care in 2007, with the mission to enhance oncologist education about the importance of discussing costs of recommended treatments with patients, identifying causes of rising cancer care costs, and developing policies that improve access to the best care at the lowest cost.
In 2013, ASCO renamed the group the Value in Cancer Care Task Force, charging it with building a framework for comparing clinical benefit, treatment toxicity, and costs in medical oncology. The result was the ASCO Value Framework, released in June 2015, which provides a method for weighing the value of new cancer treatments. The framework’s stated aims are to ensure that patients and their health care providers have the information needed to make informed decisions regarding cancer care. ASCO plans to release the final version sometime in 2016.
NCCN states that “value is often understood as benefits of treatment or quality of care weighed against the economic cost,” but admits that “it has been less clear which costs and benefits must be considered.” To shed light on the issues, NCCN hosted “Value in Cancer Care” summits in September and December. Both meetings addressed a variety of topics associated with the access, value, and cost of cancer care. NCCN plans to publish a white paper with best practices recommendations later this winter in the Journal of the National Comprehensive Cancer Network (JNCCN).
In addition to being a significant burden for patients, the increasing cost of cancer care is giving rise to concerns about the sustainability of the U.S. health care system. Cancer care in the U.S. is often fragmented with costs and reimbursements for services that are frequently inconsistent across providers and treatment settings. In addition, the current system generally lacks transparency and/or communication with patients in regard to treatment goals and costs. Most cancer patients have no real sense of what the cost of their treatment will be—and many find themselves saddled with debt. The financial burden, or so-called “financial toxicity” of cancer care often continues long after active treatment ends.
Cost is a significant concern, but access to quality care that results in the best possible outcomes is also crucial to patients. The Patient Protection and Affordable Care Act (ACA), passed in 2010, has increased the number of Americans with health insurance. However, the affordability of health care remains a key concern. To help control costs, many health plans limit access to the kinds of specialists cancer patients need. This can adversely affect outcomes. Experts agree that timely access to oncologists and cancer centers is imperative. To this end, ACA mandates that health plans participating in Marketplaces meet network adequacy standards to ensure that patients have access to needed care without “unreasonable delay.”
Despite a general agreement that the current cancer care system isn’t working well, there is no easy fix. FORCE plans to stay involved in the conversation, and to share updates on the topic with our community. As an organization that strongly supports personalized medicine, FORCE has advocated for more research and clinical care focused on risk assessment, risk-based interventions, and targeted therapies. These investments – while costly in the short-term – may improve outcomes, quality of life, and ultimately reduce the cost of care if implemented effectively. Therefore, it is important that any new guidelines or policies do not stifle innovation for improved options for preventing or treating disease, nor limit appropriate consumer access to services.
Consumers must remain part of this conversation. The only way for that to happen is to assure that they are aware of the dialogue, and understand the issues being discussed and solutions being considered so that they can weigh in. FORCE’s goal is to educate and engage our community in this dialogue to ensure that our health care system adapts care based on patients’ unique needs while taking individual priorities and beliefs into account.
Tags: brca, BRCA 1, BRCA 2, brca research, brca testing, BRCA1, BRCA2, breast cancer early detection, breast cancer prevention, cancer prevention, FORCE, gene testing, HBOC, health policy, hereditary cancer, hereditary cancer research, pancreatic cancer, previvor, prophylactic mastectomy, prophylactic surgery, prostate cancer, PTEN, screening and prevention, survivor, value in cancer care