Cancer Advocacy: The Voice of the Patient

Conference Correspondent - AVBCC 2018


A care management session brought together leaders from several notable patient advocacy organizations in oncology. In addition to providing an array of educational resources and support functions for patients, these organizations have foundations that provide a critical safety net for uninsured and underinsured patients in the form of charitable grants to help them afford cancer medications.

Patricia Goldsmith, CEO of CancerCare, noted that many patients with cancer struggle to afford the cost of treatment. Although the out-of-pocket cost of oncology therapies is most commonly cited, there are many other real-world practical barriers encountered by patients, such as transportation costs, child care costs, and lost income from being absent from their job or not being able to work at all. In terms of medications, Daniel Klein, President and CEO of Patient Access Network Foundation indicated that the problem has become more acute in patients at 150% to 400% of the federal poverty level, many of whom are Medicare-eligible and lack supplemental coverage. When discussing pharmacotherapy, moderator Robert Goldberg, PhD, Vice President of the Center for Medicine in the Public Interest, noted that the combination of affordability issues, treatment-related side effects, and challenges in obtaining prescribed therapies can lead to treatment interruption or discontinuation, which, in turn, can result in poorer outcomes for patients.

Commenting on value assessments in cancer, Dr Goldsmith noted that value frameworks do not adequately take the patient perspective into account. In fact, panelists viewed value frameworks as contributing to the rationale for payers instituting access restrictions for cancer therapies. For example, some payers have begun to use step therapy as a utilization management strategy in oncology. Looking at the cancer care ecosystem as a whole, patient advocacy groups must participate in the broader discourse to ensure that the patient’s voice is heard, noted Elizabeth Franklin, LGSW, ACSW, Executive Director of the Cancer Policy Institute of the Cancer Support Community. Although it is not the role of the advocate to assess the value of treatments, advocacy organizations, through their charitable foundations, must ensure that patients continue to get access to treatment.

Mr Klein noted that only pharmaceutical manufacturers contribute to safety net programs. However, this is becoming more difficult as charitable organizations are receiving less and less industry funding for Patient Assistance Programs (PAPs). In fact, although the number of cancer programs operated by the 8 leading charities continues to grow—from 66 in 2017 to 127 in 2018—two-thirds were closed as of October 15, 2018, meaning that no funding was available.1 Panelists voiced concerns that a high level of regulatory scrutiny at the federal level is affecting PAP funding, which may ultimately harm patients by negatively affecting access to treatment.

The panelists agreed that the need for patient support will only become more acute in the future, citing the rise of personalized medicine as a factor in driving the overall cost of cancer care, which will increase the patient burden. In terms of relief, it was noted that the Centers for Medicare & Medicaid Services (CMS) has expressed some support for an out-of-pocket cost-sharing cap for patients with Medicare Part D drug coverage. This was seen as a positive development in helping to limit Medicare patients’ cost exposure, but the panel indicated that it was only the first step in providing equitable access for all patients with cancer.