In emergencies such as the COVID-19 coronavirus pandemic, government health agencies have the authority to grant waivers for various federal health programs. Starting on March 23, 2020, the Centers for Medicare and Medicaid Services (CMS) waived certain requirements and protocols for providers and beneficiaries.   

Drug pricing is a top legislative issue for Congress, and amid rising COVID-19 concerns, health policy topics are more pressing than ever. On March 5, Senator Martha McSally (R-AZ) introduced the Lowering Prescription Drug Prices for America’s Seniors and Families Act of 2020, which would allow Medicare to negotiate prices after a drug’s patent expires as well as cap out-of-pocket prescription spending for seniors at $3,100 per year.

As groundbreaking yet high-cost cancer treatments make their way into clinical practice, the effects of financial toxicity can put a damper on the profound effects that new, lifesaving medications can have on patients with cancer. It’s a problem that even Washington, DC, hasn’t been able to address—so what can oncology nurses do about it?

A patient is rushed to the emergency room, diagnosed, and taken to surgery immediately. The patient recovers, but weeks later a bill arrives beyond any expectation, and too often ability, to be paid. This practice has become so routine that it has its own name: balance billing or, more commonly, surprise medical billing. It strikes many Americans with the burden of their ailment once again. 

The high cost of prescription medications—often lifesaving drugs—has become an unsustainable burden for many American patients. It’s a central topic in the healthcare conversation and a complex issue with countless moving parts. National opinion polling finds that a majority of people want to see changes in drug pricing.

Few know the power that prescription medications have on the quality of life for patients more than nurses. In more than just physical ways, access to affordable drugs is essential to patient-centered care and emotional, psychological, familial, and even financial stability. For too long, the cost and availability of medicines have been barriers to health care, rather than opportunities for survivorship. 
 

On March 26, 2019, more than 40 nurses came together at the Maryland General Assembly’s Senate President’s Conference Center for the Oncology Nurses Night in Annapolis. This was the Greater Baltimore Chapter of ONS’s (GBCONS’s) third advocacy trip to the statehouse, but it was the first statewide ONS event. All four Maryland chapters were active in planning the night, and many new advocates were inspired to speak out.

Since 2016, then-candidate Trump promised he was going to bring healthcare costs under control. In a White House announcement on June 24, 2019, the president took steps to add transparency to the process by requiring insurance companies, hospitals, and physicians to identify fees and costs in public and simple ways for patients to see in advance and to understand.

Reducing the high cost of prescription drugs continues to be a priority focus for both the U.S. Congress and Trump administration, and ONS is closely monitoring and providing input on how key proposals could affect patient access to oncology care.   

According to a Gallup Poll released on April 2, 2019, Americans borrowed approximately $88 billion to pay for health care in 2018. At a National Academies of Science healthcare conference on April 4, the main takeaway was that many Americans surveyed reported that they could not afford to have a serious illness like cancer. The cost of care, even with insurance, is more than many can financially withstand. Oncology nurses know how patients must maneuver through the system to defer costs, sometimes resulting in delayed or alternative approaches to care.

Democrats control the majority of the House of Representatives, and it’s their responsibility to provide and pass a U.S. budget. As with any Congress, it’s always easier said than done. With a larger, more progressive freshman class interested in pushing more environmental, health, and welfare policy issues forward, costs will be a concern.

Nurses should initiate financial conversations with patients early and offer resources to improve access to cancer care, speakers at the ONS Center for Advocacy and Health Policy’s third annual policy summit on November 13, 2018, concluded. The event, held at the Hyatt Regency Hotel on Capitol Hill in Washington, DC, brought together nurses and industry and government experts to address the issue of financial toxicity in today’s cancer care.

Dollars spent on cancer drugs increased from $26.8 billion in 2011 to $42.1 billion in 2016, according to the results of a study reported in the Journal of Oncology Practice.

On October 25, 2018, U.S. Department of Health and Human Services (HHS) Secretary Alex Azar announced an advanced notice of proposed rulemaking (ANPRM) calling for a demonstration project to more closely align Medicare payment for certain Medicare Part B drugs and biologics with international prices, which an HHS analysis showed to be 1.8 times lower on average than in the United States. The proposal is a follow-up to the president’s prescription drug blueprint and HHS request for information to reduce patient out-of-pocket costs for prescription drugs. HHS estimates a savings of $17.2 billion over five years.

To Rally Voters, Democrats Focus on Health Care as Their Closing Argument

Although many states are already collecting early votes, Tuesday, November 6, 2018, will tell the full tale of the midterm elections. Many Democrats are emphasizing their focus on health care in the final days and hours before the election. By most measurable public opinion poll, health care remains the most important domestic issue for voters.

The financial toxicity associated with cancer care is becoming a widely known side effect of cancer treatment. Beyond the disease's physical impact, patients are suffering from overwhelming medical costs, high prescription drug prices, and unforeseen, expensive complications. Those issues, often coupled with the inability to work, are leading to many patients quickly depleting their savings or slipping into debt.

ONS shared the perspective of nurses caring for patients who may struggle to afford cancer drugs in comments submitted to the Department of Health and Human Services (HHS) on its Prescription Drug Reform Request for Information.

Health care is arguably the top domestic policy issue and of major concern to most Americans. Coverage, access, and, most importantly, affordability are not abstract political concepts discussed in elite coffeehouse circles but rather are real-world problems that people struggle with daily. Do I need to see a physician for this problem? What impact will a diagnosis have on my life? Can I afford the medication?

Advancements in oncology, such as new diagnostic tools and novel therapies, have improved overall survival rates but have come at a high cost. In 2011, targeted therapies accounted for 63% of all chemotherapy expenditures. A novel cancer drug routinely costs each patient more than $100,000 per year; annual spending on cancer drugs is globally estimated around $100 billion U.S. dollars and is predicted to rise to $150 billion by 2020.

Financial toxicity in cancer care is an increasingly recognized burden for many patients. Driven by many factors, financial toxicity is often a combination of a patient’s individual characteristics, the costs associated with care, and the overall impact of the illness on a patient’s ability to work throughout the cancer journey. Financial toxicity negatively impacts patient outcomes, and many patients struggle with costs regardless of whether they’re covered by health insurance—this includes undocumented immigrants. Currently, more than 11.1 million undocumented immigrants live in the United States, and they aren’t immune to cancer diagnoses.

On May 7, 2018, the White House told the Department of Health and Human Services to overturn Kansas’s new lifetime limit restrictions on Medicaid. Kansas has been leading the way for states looking to implement restrictions to federal benefits. The state previously implemented work requirements for Medicaid recipients and was trying to impose time limits for how long recipients could receive Medicaid for some time. Had its efforts stood, this would mark a fundamental shift in how the federal program is implemented at the state level.

Although it’s one of the less visible commissions, the President’s Cancer Panel monitors the activities of the National Cancer Program and reports on the burden of cancer. The panel reviews a number of topics and keeps current with demographic information and the latest cancer incidence research. After reviewing and recommending based on existing data, the panel releases a formal report to the president. In its most recent report, the panel found serious issues with barriers to access for cancer survivors, and it addressed the costs of drugs and the value therein.

On January 24, 2018, the Senate officially confirmed the nomination of Alex Azar, the newest secretary of the Department of Health and Human Services (HHS). Azar replaces former HHS secretary Tom Price, a physician who stepped down in late 2017. Although confirmed along party lines, Azar’s long governmental experience had plenty of support despite his past connections to the pharmaceutical industry.

Despite having healthcare coverage, a third of patients with cancer end up paying more out of pocket than they expected for their cancer treatments, a new study found. The results were published in JAMA Oncology.

It’s beneficial to think about financial toxicity in terms of issues adhering to treatment. Mounting evidence suggests that patients with financial toxicity aren’t adhering to their cancer care. It’s becoming a common side effect of cancer treatment, and patients might be less likely to take treatments their medical team prescribes because of it, leading to substandard care.

The cost of health care in the United States has been the source of debate for years. Questions range from the extent of Medicare and a Medicaid coverage, how—or if—the government should regulate drug prices, who deserves coverage, and how Institutions collect payments from insurance companies. But often, one important aspect is missing from the numerous conversations on health care, treatments, and financial reimbursements: the patients.

I have the privilege of managing and being the sole provider in a unique program. I work in the Hereditary Cancer Program at Saint Louis University Cancer Center, where I provide risk assessment services and education about genetic testing to individuals and families in the region. It’s an amazing nursing role, and I can truly help people prevent cancer and manage their risk.

Two members of the House of Representatives have put political party differences aside and introduced bipartisan legislation that requires health insurers to cover traditional chemotherapy, along with oral medications associated with cancer treatment. U.S. Representatives Leonard Lance (R-NJ) and Brian Higgins (D-NY) have proposed the Cancer Drug Parity Act (H.R. 1409). The intent of the bill is to ensure appropriate oncologic treatments are affordable and covered for patients with cancer.

The financial burden associated with cancer treatment is reaching new heights. In the heat of making decisions, patients and their families may drastically deplete their finances to reap the advantage a new drug may offer.