Myths and Realities of Health Care Reform and the Affordable Care Act: Implications for Oncology Nurses and their Patients

Sheila A. Haas, PhD, RN, FAAN
Professor
Marcella Niehoff School of Nursing
Loyola University Chicago

Patricia J. Friend, PhD, APRN, AOCN
Associate Professor and Program Director-Oncology master’s program
Marcella Niehoff School of Nursing
Loyola University Chicago

Abstract:

This article will address the implications of health care reform on the oncology patient and provider including: Describing how the Affordable Care Act (ACA) will affect demand for care and access to care for oncology patients; describing the opportunities within ACA provisions for nurses and Advanced Practice Registered Nurses (APRNs) in oncology nursing practice and discussing ways that ACA will affect care of oncology patients provided by oncology nurses and APRNs.  The implications of the U.S. Supreme Court Decision regarding the ACA will also be discussed as well as implications for oncology nurses.

Introduction and Overview of Health Care Reform and the Affordable Care Act:

Most Americans subsist on a constant diet of media sound bites, especially in the area of quality, safety and costs of health care.  They believe what they hear: health care in the United States is technologically sound, offers cutting edge pharmaceuticals and diagnostic testing, and is consequently safe and of high-quality.  This belief is fed by advertising and news briefs.   Unfortunately, the veracity of these briefs and sound bites ranges from truth to falsehoods, with many mixed messages in between, some being true, some “spin” and some false.

Americans who look to websites for information about health care quality and health care reform encounter similar situations.  Sponsored websites are often biased and those biases or perspectives are not clearly explained.  Many sites exist to promulgate an ideological or political philosophy about health care. 

In election years, sound bites escalate and the veracity is compromised by negative campaigning.  This has become such an issue that there are now websites such as politifact.com sponsored by the Annenberg Foundation that analyze and provide a veracity check on sound bites.

Statistics

In reality, the World Health Organization ranks the U.S. as #37 in the world for quality of care due in part to issues with access to care in the U.S., as well as, less than optimal outcomes of care provided.  Websites such as the Commonwealth Fund offer data on quality of health care in the U.S. as compared to other industrialized countries (Commonwealth Fund Report, Why not the Best, 2011).  The Institute of Medicine (IOM) has provided multiple reports on the status of health care in the U.S. starting with To Error is Human in 1999.  In 2001, the IOM Report Crossing the Quality Chasm, delineated issues with quality and safety and recommended Six Aims for U.S. health care. 

Today, more than 10 years later, we have made some progress, but we are not where we need to be particularly in the setting of quality cancer care initiatives (Albright et al., 2011; Spinks et al., 2012). 

Issues with quality, safety and outcomes stem from values and beliefs about health that vary within the U.S. population.  First, not all Americans share the belief health care is a right; consequently health care is available to those who have wealth or employer-provided healthcare or those who have little or no money and are dependent on charitable or government funded health care. 

The arbitrators of access to care have been the health care insurance companies, for-profit entities that have had little regulation of their rules or fee structure.  Second, in the U.S. primary care and prevention take a back seat to acute care. Therefore, we have invested in hospitals, diagnostic technology, pharmaceuticals and physician specialty practice, while at the same time downsizing our prevention and public health infrastructure. 
the Patient Protection and Affordable Care Act (ACA) that was signed into law by President Obama in March of 2010.  The major foci of ACA include:

• A focus on health insurance reform to enhance access and coverage for care,
• Focus on primary care, health promotion and disease prevention that requires planning in areas such as wellness assessment, and integration of behavioral health
• Requirements for safe and quality care that demands enhanced implementation of evidence-based guidelines and implementation of new cost effective delivery systems. (The Kaiser Family Foundation, June, 2010)

ACA takes an incremental approach to health care reform, so each year there are added benefits and requirements. This provides time for development of mechanisms to meet requirements of the law and time to inform the population of benefits and how to access them. 

There are many reputable websites that provide information for providers and patients about the ACA law.  Much of the ACA law specifies insurance reform designed to enhance access and coverage of care.  See Table 2, for a summary of ACA Insurance reform and website resources. 

Some of the insurance reform is focused on decreasing cost of care.  In other industrialized countries where a health care insurance model is in place to provide health care coverage, profits are limited to a certain percentage as are overhead administrative costs.  Therefore, in ACA, insurers cannot use more than 20% or 15% of each health care insurance dollar for overhead or profit, whereas in the past, in the U.S. some insurance companies were taking up to 40% of every insurance dollar for their costs. (Cohen, 2009)

Table 2 provides the impetus for proactive thinking and planning on the part of nurses, especially oncology nurses.  With the ACA focus on primary care, prevention and wellness, nurses must move to center stage as major providers of care.  

There are several implications of insurance reform in ACA nurses need to be cognizant of:

• more than 40 million uninsured and those denied insurance due to a prior condition will have insurance and  seek access to and provision of care;
• some will need primary care including screening, diagnosis and treatment;
• some will be cancer survivors needing integration of primary care with specialty care to monitor for  late and long term effects as well as disease recurrence with integration of psychosocial and wellness services, and
• some will need specialty care for acute or chronic conditions such as cancer.

Roles for nurses under the ACA law are supported by another IOM Report titled:  Future of Nursing: Leading Change, Advancing Health.   This report provides very strong recommendations regarding future roles and contributions of nurses (IOM, 2010).  The Future of Nursing Report (2010)has four key messages:

• Nurses should practice to the full extent of their education and training.
• Nurses should achieve higher levels of education and training through an improved education system that promotes seamless academic progression.
• Nurses should be full partners, with physicians and other health care professionals, in redesigning health care in the United States.
• Effective workforce planning and policy making require better data collection and information infrastructure.   (IOM, 2010)

Other key messages from the IOM Report (2010): Foster registered nurse participation as full partners in the care team; encourage nurses, employers and educational institutions to provide for academic progression that can be easily accessed and accomplished by nurses, and acknowledge the need for an enhanced information infrastructure and data collection to support care coordination and aggregation of data for decision support. 

Indeed, health care reform and the ACA positions nurses, in general, and APRNs in particular, as integral and first- line care providers, especially in preventative and primary care, and it is anticipated that few areas of healthcare will be more affected by the ACA than oncology (Main et al., 2011).

Opportunities and Implications of ACA for Oncology Nurses and Their Patients:

Table 3 lists ACA strategies for prevention and wellness. 

The ACA Health Care Reform law provides opportunities and challenges for oncology nurses.  First, oncology nurses need a seat at national planning councils and tables; most national nursing organizations such as the Oncology Nursing Society (ONS) make recommendations for members to serve on these committees so that nursing’s voice including their patients’ voices are heard.  Indeed, ONS actively partakes in the policymaking process to assure integration of the nursing.

Second, oncology nurses play a critical role and need to take the lead in cancer prevention and health promotion across the cancer care continuum, including participation in education and outreach campaigns for both primary and secondary cancer prevention. 

Third, oncology nurses need to get involved in grant seeking and writing to support delivery of evidence-based and community-based prevention activities including addressing health disparities. (Dallred et al., 2012)

There are opportunities within the ACA law for growth of disease prevention and wellness programs.  Cancer is now seen as a chronic disease; there are almost 14 million cancer survivors in the U.S. today, and that number is expected to grow to 18 million by 2022. (Siegel et al., 2012) The unique care needs of this burgeoning patient population demand for integration of both primary care, as well as, monitoring for late and long term effects of cancer treatment and disease recurrence.

This population has unmet care needs, and oncology nurses, especially advanced practice registered nurses (APRNs) are uniquely qualified and positioned to care for the growing number of cancer survivors. (Howell et al., 2012)  Dr. Mary Naylor’s work and research on transitional care has demonstrated the impact that APRNs can have on patients’ transition back to self care in the community.  (Naylor, 2012; 2010; Bradway et al., 2012) Work and research is now being done to demonstrate that oncology nurses can coordinate care and assist chronically ill patients’ transitions to care in the community. (McCorkle et al., 2011)The ACA law specifies Medicare will pay for a comprehensive risk assessment annually and providers, such as APRNs, doing risk assessment will be reimbursed 100% of of the doctor's fee schedule.  In addition, for Medicare patients, there is no deductable or coinsurance for development of a personalized prevention plan when services are provided in outpatient areas.  Insurers must also provide recommended immunizations, preventative care for infants, children, adolescents and additional preventive care and screenings for women without cost-sharing. (The Henry J. Kaiser Family Foundation, June 2010)

Knowing significant funding will be devoted to prevention and wellness should provide impetus for organizations to expand existing services and consider evolving roles for the most cost-effective providers of prevention and wellness care. 

Oncology care registered nurses can do much of the education and outreach in these areas.  Trained and certified oncology nurses can and should incorporate genetics/genomics into comprehensive risk assessment. Thought should also be given to creating new services, such as rehabilitation services during, as well as, after cancer treatment that enhances quality of life and wellness.

The ACA law enables more than 40 million patients to seek access to safe, quality care.  We are already seeing funding for prevention and wellness bring new players into the field such as pharmacy chains (CVS and Walgreens), as well as big box stores such as Wal-Mart that are collaborating with health care chains to provide convenient care. 

We are also seeing players and providers will not only be differentiated by price, but also by quality, safety and convenience.  This means Cancer Survivor Clinics will need to be open at times suited to consumers (evenings and weekends) and also allow open access (no appointments or long wait-times).  Consumers are also looking for follow up to care provided.  Pharmacy chain clinics already provide this service.

The ACA law authorizes states or state-designated entities to establish community-based interdisciplinary, inter-professional health teams to support primary care practices within a certain area.   This law clearly defines “health teams” as groups that may include nurses, nurse practitioners, medical specialists, pharmacists, nutritionists, dietitians, social workers, and providers of alternative medicine.  

These teams are the foundation of the “patient-centered medical homes” (PCMAs).  PCMAs are defined as a mode of care that includes personal physicians, whole person orientation, coordinated and integrated care, and evidence-informed medicine (American Nurses Association, 2010). 

PCMAs are the building blocks of Accountable Care Organizations (ACOs) defined as provider groups (at a minimum, primary care physicians, specialists, and hospitals) that accept responsibility for the cost and quality of care delivered to a specific population of patients cared for by the group’s clinicians. (Shortell, Casalino, & Fisher, 2010) 

The goal of the ACO is to deliver coordinated, efficient and effective care.  ACOs that achieve quality and cost targets should benefit from financial gains; payment should be based on quality rather than quantity of care. (Shortell et al., 2010)

Accountable Care Organizations are challenged to enhance quality and cost effectiveness of care.  To do so, an ACO needs to be able to care for patients across the continuum of care in different institutional settings; plan, prospectively, for budgets and resource needs, and, finally, develop and support comprehensive, valid and reliable measurement of its performance. (Berenson & Burton 2011)

Whether they are operating under contracts with private health insurers and or public payers like Medicare, three major characteristics differentiate ACOs from existing health plan and provider arrangements:

Shared savings, freedom of choice of providers for patients, and accountability for quality and prevention of limitation of patients' access to services.

In order to save money the ACO is monitored through the use of metrics to determine if the ACO qualifies for shared savings. (Berenson & Burton, 2011)

ACOs are expected to meet these challenges through initiatives to enhance quality and safety such as use of comparative effectiveness research and analysis, collaborative inter-professional teamwork, development and use of evidence-based guidelines, coordination of care across settings including the patient-centered medical home, efficient communication across settings and with patients in the community and efficient, reliable and valid data collection at point of care.  Many of these initiatives are dependent of electronic patient records being accessible to both the PCMAs and ACOs.

The oncology nurse’s role in ACOs involves oncology nurses functioning as leaders, facilitators and/or participants in all ACO quality and safety initiatives including:Telehealth, patient education, community outreach, care coordination and transitional care.  To be leaders, facilitators and participants in all ACO quality and safety initiatives, increased participation by oncology nurses is essential in: Conceptualizing planning, development, implementation and evaluation of new models of care that involve health promotion, prevention and wellness initiatives, primary care for cancer survivors and innovative enhancements to care. (Grant et al., 2012; Howell et al., 2012)  Oncology nurses also need to be at the table for development, implementation and evaluation of electronic patient records that interface with all sites of care and track processes and outcomes of care as a routine part of care documentation. 

Enhanced use of primary care cancer survivor clinics staffed by APRNs who also have oncology expertise/specialty certification fits within the ACA definitions of Health Care Teams. Leveraging the oncologist's time by providing primary and wellness care provides cost-effective care, and enhances patient and family satisfaction. 
Evolution of oncology nurses’ roles in ACOs and PCMHs has the potential for significant outcomes if oncology nurses and APRNS are fully utilized within ACOs and PCMHs through decreased Emergency Department (ED) visits, decreased hospital readmissions, decreased errors and waste, enhanced patient/family participation in care, quality of life and increased satisfaction with care

ACA’s potential effect on care provided by oncology nurses and APRNs includes:

1. Oncology nurses will become collaborative partners in designing and implementing and evaluating evidence-based oncology protocols.
2. Well designed and implemented electronic patient records will assist in dissemination of the electronic interprofessional patient care plan, care coordination, development and dissemination of patient data collection, aggregation and analysis of outcomes of care.
3. Care coordination by oncology nurses and APRNs will insure patients and families are better able to engage in learning and self-management while at home, use available community resources such as psychosocial support and palliative care and avoid unnecessary visits to ED or readmissions.

The ACA law will create demand for more nurses, APRNs, physicians and other provider members of the care team.  The ACA includes workforce initiatives and funding priorities for those roles.  As ACA was evolving, the Department of Health Resources and Services Administration (HRSA) created corresponding initiatives and funding sources to enhance development of the nursing and health care workforce.  

Of interest to oncology nurses are initiatives such as:

• Expansion of the workforce diversity grant program  permitting grants to be used for diploma and associate degree nurses to enter bridge or degree completion programs or for student scholarships and stipend programs for accelerated nursing degree programs

Authorization of $338 million in appropriations to carry out nursing workforce development programs – including the advanced education nursing grants, workforce diversity grants, and nurse education, practice, quality and retention grants; and authorization of grants to advanced practice nurses who are pursuing a doctorate or other advanced degree in geriatrics and who, as a condition of accepting a grant, will agree to teach or practice in the field of geriatrics, long-term care, or chronic care management for a minimum of 5 years.  (American Nurses Association, 2010) Implications of the U.S. Supreme Court Decision regarding the ACA

Some of the initiatives of the ACA law have been moving very slowly due in part to a lawsuit filed by 25 states regarding the ACA law.   This lawsuit was reviewed by the U.S. Supreme Court and in June, 2012 the Supreme Court upheld the ACA, and  two major issues dealt with by the Justices. 

The first was the Individual Mandate provision of ACA.  The Individual Mandate requires all Americans have health insurance or pay a fine.  Although many Americans recognize the Individual Mandate as an issue, they are less informed on its purpose and who would be affected.  This ACA provision will have an impact on approximately 1 to 3% of the U.S. population and will go into effect in 2014.  There will be no effect on the rest of the U. S. population who are already covered by Medicare, Medicaid, employer-based health insurance, Tricare and Veterans’ Health Care. 

A majority of the Court Justices (5 to 4) upheld the Individual Mandate, saying that the Mandate is “a constitutional exercise of Congress’ power to tax.” (Kaiser Family Foundation #8332, 2012, p. 4) Those who can afford health care insurance and decide not to purchase it will pay a penalty “tax” as part of their yearly filing of Federal Income Tax.   The Mandate simply says either buy health insurance or pay the tax; however it does not say that failure to buy health insurance is unlawful. (Haas, 2012a)  This tax will help defray the taxpayers’ burden of paying for “freeloader” care or care for those who have not purchased health insurance.  The principle behind the Individual Mandate is that all citizens should be covered by health insurance, so costs are spread over the healthy, those acutely ill as well as the chronically ill. (Haas, 2012a) 

The second issue addressed and decided by the Justices was the ACA Medicaid expansion. In a vote of 7 to 2, the Justices' ruled it was unconstitutionally coercive since it violates Congress’ spending clause power and puts all existing Medicaid funds at risk for each state; and the Justices found the states were not given adequate notice of voluntarily consent. (Kaiser Family Foundation #8332, 2012) This decision leaves “Medicaid expansion provision of the ACA intact and instead restricts the Secretary’s (Department of Health and Human Services) enforcement authority.” (Kaiser Family Foundation #8332, 2012, p. 6)

Expansion of Medicaid coverage was an initiative to bring more persons at or below 133% of the federal poverty level into state-sponsored Medicaid insurance plans.  To enable this increased Medicaid enrollment, the ACA has provision to pay 100% of costs for states to increase enrollment until 2017, when the Federal government share will decrease to 90%.  In the current economic environment, states are saying they will not expand Medicaid and cannot even afford the administrative costs of Medicaid expansion. (Haas, 2012)

Finally, many states have been slow to move on state-based health insurance exchanges, the primary market place where health insurance programs for individuals and employers are provided. 
“At least a third of the states have made little progress setting up new marketplaces, which means either the federal government will run their exchanges or they will take part in a state-federal partnership.” (The Commonwealth Fund, 2012, p. 2)

Oncology nurses need to understand what their state is doing with regard to expansion of Medicaid coverage and state-based health insurance exchanges, as well as the individual Mandate decision so that they can answer patient, family and peer questions.

Conclusion:

The ACA provides opportunities and hope that all U.S. citizens will have access to health insurance and health care where they will receive safe, patient centered, timely, efficient, effective care that is respectful of their wishes, beliefs and culture.  But there are big challenges with implementation of health care reform and the ACA.  There are many who are opposed to the ACA and many more who do not understand the provisions of the ACA and take at face value partisan views of the ACA. 

Oncology patients are especially vulnerable should efforts go forth to repeal the ACA where they would again be marginalized as persons with preexisting conditions that make acquiring health insurance impossible or extremely expensive.  Cancer is now recognized as a chronic condition and thus these patients need primary care as well as continuing care when the acute phase is over.

There are those who say the cost of ACA is too high and those who say they do not want “big government” in health care.  Many in this group however do not what to give up Medicare or Veterans’ health care benefits.  In reality, we cannot go on as we have been in the U.S.  Costs of health care continue to rise, approaching 20% of GDP, individuals and families are paying more of the cost of premiums in employer plans and there has been little change in health care safety and quality outcomes.   If other industrialized countries can provide high quality care for half of our costs, why can’t we do it?  Nurses, particularly oncology nurses, need to take leadership roles in advocating for health care reform including many of the provisions of the ACA, such as coverage for persons with pre-existing conditions cannot be denied by insurance companies nor can insurance companies put caps on coverage so that when the lifetime cap is reached insurance is denied. 

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