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Charitable Assistance Among Economically Vulnerable Cancer Patients: Patient Access Network Foundation Summary Statistics 2011-2015

Helaine E. Resnick PhD, MPH; Bruce Barth; and Daniel Klein, MHS
This report shows that among people who are eligible for charitable assistance to cover out-of-pocket (OOP) prescription drug expenses, those with cancer have higher per-claim and per-person OOP costs than their counterparts with other health conditions.
The American Cancer Society estimates that about 1.7 million Americans will receive a cancer diagnosis in 2016, and about 596,000 people will die from cancer this year. Although these statistics may seem bleak, the United States has witnessed major reductions in cancer mortality in recent decades. The drop in cancer mortality is largely attributable to 3 factors: reductions in smoking, improvements in early detection (screening), and the availability of better cancer treatments. Together, these factors contributed to a 23% reduction in cancer mortality between 1991 and 2012.1

Given the marked improvements in cancer mortality—arguably the most important indication of progress in the fight against cancer—why do warnings about the threat of cancer to the public health seem to be increasing, rather than decreasing over time? One reason is the dramatic increase in patients’ out-of-pocket (OOP) cancer treatment costs that arise from several sources: insurance premiums, co-payments, coinsurance, deductibles, and tiered formularies. In addition to costs that are directly associated with care, indirect OOP costs add to the burden. These include factors such as lost income and travel expenses for both patients and caregivers. Despite the many sources of OOP costs for cancer patients, OOP costs for cancer medications have received the most attention, in part due to the marked increases in the cost of cancer drugs. National data show that retail expenditures on prescription cancer medications increased 5-fold in the decade between 2001 and 2011, from $2.0 billion to $10.0 billion.2

Increased spending on cancer drugs is driven by a combination of factors, including an aging US population and complex changes in the oncology drug development pipeline and marketplace. The latter involve:
  • An active drug development pipeline (45 new drugs were launched between 2010 and 2014)
  • Availability of new drugs that often provide better outcomes with fewer side effects than traditional options
  • Development of immunotherapeutic products and a push to develop new therapies, as well as new drug classes, and increased use of new targeted therapies • A sharp increase in the number of protected brands and new product launches
  • A slowing of patent expirations3
Although these trends account for much of the recent increase in spending for cancer drugs, many of the medications that are involved in the debate over skyrocketing cancer drug costs are the same drugs that are responsible for marked improvements in cancer outcomes.3

It is against this complex backdrop that the increasing cost of cancer medications has received attention from the federal government,4 advocacy organizations,5 and professional societies.6 For patients, increased OOP costs associated with cancer medications directly impact financial well-being, especially among patients who have low incomes and those who are uninsured or underinsured. One high-profile study that analyzed data from 1995 to 2009 in Washington State showed that cancer patients had bankruptcy rates that were 2.65 times higher than people without cancer; a sobering reflection of the financial strain that a cancer diagnosis places on many families.7 A more recent study of financial hardship among people with cancer (borrowing money or going into debt, filing for bankruptcy, being unable to cover OOP costs, or making other financial sacrifices) showed that 20.4% of cancer survivors experienced 1 or more of these hardships. Among these individuals, 7.1% had to borrow money to pay for cancer treatment, 11.9% could not cover OOP cancer treatment expenses, and 9.4% made other financial sacrifices to deal with their cancer diagnosis.8 The growing literature on the financial impact of cancer leaves little debate concerning both the short- and long-term impact of this diagnosis among economically vulnerable patients and their families.

It is perhaps not surprising that the term “financial toxicity” has taken root to describe the consequence to patients who choose cancer treatments with high OOP.9 Although national data provide a glimpse into the characteristics of relatively small numbers of economically vulnerable cancer patients, overall, very little is known about these individuals—and there are few published data that exclusively focus on this group. Using a unique data source, the objective of our report is to provide an overview of this patient population.

DATA UTILIZED FOR CURRENT ANALYSIS

The Patient Access Network (PAN) Foundation is an independent, national 501(c)(3) organization that assists federally and commercially insured individuals living with chronic, lifethreatening, and rare diseases, with their OOP costs for prescribed medications.10 Patients who seek support from PAN must demonstrate eligibility by providing required information to a call center, or online through self-service portals on PAN’s website.11 During the application process, patients provide demographic and insurance information. Support is reserved for people whose household income is less than or equal to 400% or 500% of the federal poverty level (FPL). FPL is calculated based on reported total household income and the number of people living in the patient’s household. Once a patient is determined to be eligible for support from PAN, claims can be immediately submitted to PAN. Pharmacies, physician practices, and other entities that dispense prescriptions submit claims to PAN and are reimbursed for eligible patients’ OOP drug expenses. Claims that were filed by pharmacies are for self-administered prescription drugs that are covered under Medicare Part D, while physician-based claims are for Medicare Part B prescription drugs that are typically administered by physicians in a hospital or office setting. PAN maintains a database that details patient-level information on these claims.

PAN maintains a number of disease funds that provide support for OOP medication expenses for specific health conditions. Fluctuations in resources for these disease funds result in some year-to-year variability in which financial resources are available to support OOP medication expenses for specific conditions. Between 2011 and 2016, 84 funds provided support for OOP health expenses for distinct conditions, and of these, 33 provided support for various cancers.



 
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