The National Patient Advocate Foundation (NPAF), a nonprofit organization providing the patient's voice in improving access to quality cancer care, has released a blueprint to accelerate the delivery of new treatments to patients and launched a new grassroots movement called Project Innovation to drive action.
Issued as a call to action, a new white paper, Securing the Future of Innovation in Cancer Treatment, is the result of consultation with biomedical researchers, medical innovators, patient advocates, clinicians and policymakers and offers a roadmap for addressing obstacles slowing the pace of cancer discovery. Among the barriers cited are a nearly 20% drop in government-funded basic research since 2010 and a steady decline in venture capital investment in biotechnology since 2007.
Also impeding progress are logistical, bureaucratic, institutional and regulatory obstacles that add years to scientific discovery and drug development, such as added steps and inefficiencies in the clinical trials process, duplicative and conflicting standards, auditing mandates, increasing regulatory requirements and delays in review decisions. As a result, it takes nine or more years from discovery to approval for a new cancer therapy, compared to an average time of two years for HIV drugs. Further, because drug development is an uncertain process, a 2010 Tufts University study puts the cost of developing one innovative cancer drug at upwards of $1 billion.
"This report represents a wakeup call for all Americans and is intended to spark a national movement to make cancer innovation a national priority," said Nancy Davenport-Ennis, NPAF's founder and chairman. "Cancer kills 1,600 Americans every day and this number will only increase in the years ahead unless we commit as a nation to hasten the pace of medical discovery. It is time to put cancer innovation on the national agenda and press for solutions that will save lives instead of continuing a one-sided conversation on the cost of treatment."
NPAF will spearhead Project Innovation, a social activation effort to involve patients, their family members and local citizens in speaking out about the importance of accelerating cancer innovation. Utilizing the online hub www.projectinnovation.org, digital advertising and multiple information channels, Project Innovation will tap the energy and ideas of cancer patients, advocates, healthcare professionals, biomedical researchers, medical innovators, payers and policymakers on ways to move cancer discovery forward. Plans call for hosting regional town halls, workshops and advocacy forums across the country; scheduling meetings with federal and state legislators and regulators; and arming interested citizens and patient advocate volunteers nationwide to advocate for cancer innovation in their communities.
Project Innovation is a collaboration of leaders from national cancer advocacy organizations, providers, biomedical research institutions, the business community and industry to put cancer innovation on the policy agenda.
Through Project Innovation, NPAF's agenda-setting report will be distributed widely to patient advocates, healthcare professionals, biomedical researchers, medical innovators, payers and policymakers with the goal of elevating cancer innovation as a national priority and advancing policy solutions addressing three pillars of innovation. Specifically, NPAF's action agenda calls for action in the following areas:
1. Expand the science of innovation by reducing logistical obstacles. The environment for conducting cancer clinical trials has become increasingly complex, adding steps and inefficiencies that have increased the time and costs considerably. One study found it takes an average of 2.5 years to open a phase III clinical trial sponsored through the National Cancer Institute's Clinical Trials Cooperative Group Program, with some studies taking more than four years to activate. Changing the situation will necessitate a more standardized regulatory-approval process, streamlining the logistical hurdles to conducting clinical trials, allowing patients expedited access to innovative therapies before they are approved for general use and developing a centralized, nationwide hub from which data relating to cancer trials can be accessed and shared to accelerate research results.
2. Improve the value of innovation by bolstering funding opportunities. Due to the nation's investment in biomedical discovery, the population of cancer survivors has grown from three million in 1971 to almost 14 million today. To sustain these gains requires increased Congressional appropriations for government-funded cancer research, experimentation in research funding and policies that eliminate uncertainty for innovators and investors, allowing them to pursue high-risk investments in next-generation cancer therapies. It also is important that our nation consider the overall economic value of innovative cancer therapies. Cost savings from fewer hospitalizations and healthcare expenditures contribute to the patient's ability to elect innovative treatments.
3. Enhance the delivery of innovation through improved communication and coordination between providers and patients. According to recent estimates, only 2-5 percent of adult patients enroll in cancer clinical trials. Rectifying this problem requires improved communication and coordination between providers and patients and regulatory oversight to ensure payers cover clinical trial costs as required by the Affordable Care Act and national Medicare policy.