It was the cancer diagnosis of Nancy Davenport-Ennis' friend that inspired her to open both the Patient Advocate Foundation and National Patient Advocate Foundation (NPAF) back in 1996
It was the cancer diagnosis of Nancy Davenport-Ennis’ friend that inspired her to open both the Patient Advocate Foundation and National Patient Advocate Foundation (NPAF) back in 1996.
Davenport-Ennis said she watched her friend, a 31-year-old divorced mother, struggle with the difficult diagnosis of stage IV metastatic breast cancer.
“She was fundamentally told that she had no treatment options,” she said. “[This experience] illustrated so clearly the needs that so many patients in the United States confront as they try to access healthcare, as they try to get to new, innovative therapeutic interventions to manage their disease, and the lack of any real network of support for them in that process aside from the support that they were finding through their physicians and nurses.”
To further NPAF’s fight for better cancer care and to give patients a voice, the foundation has launched a blueprint to accelerate the delivery of promising new treatments to patients along with a new grassroots movement called 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.
The idea for Project Innovation, which was launched at the 2014 ASCO Annual Meeting, stemmed from research that showed startling trends, Davenport-Ennis explained, which are highlighted in a new white paper, Securing the Future of Innovation in Cancer Treatment. The report is the result of consultation with biomedical researchers, medical innovators, patient advocates, clinicians, and policymakers and offers a roadmap for addressing the pervasive obstacles slowing the pace of cancer discovery.
Among the paper’s findings, is a decreasing amount of clinical trials being conducted in the United States, as well as shrinking resources to fund innovative research here.
“A war on cancer was declared more than 50 years ago,” Davenport-Ennis said. “We have had fits and starts of success in dealing with cancer, but it’s time to end the war and it’s time to get 300 million people focused in a very strategic way on increasing innovation in the United States.”
The white paper also reports that many investors who had previously been steady in supporting cancer research are beginning to move away from the field, Davenport-Ennis said, resulting in a gap that needs to be filled.
“Many of the clinical trials have moved to off-shore locations, and part of that is because there have been efforts in other nations to reform how they have been accruing the clinical trials,” she said. “Those reform measures have resulted in more people accruing to trials, which means you can get to your results and your outcomes a lot faster.”
And by getting to the results and outcomes faster, costs can be cut.
“It costs at least $1 billion to bring one new drug to market, and it’s taking us 10 years on average to do that,” Davenport-Ennis said. “Every single year that we can cut off the timeline to develop the new drug is going to mean dollars saved.”
The report also sheds light on the direction that the field of cancer care treatment is headed.
“As we’re now moving into personalized medicine, we have the opportunity to integrate genetic testing into everything that we do and start very deliberately matching therapeutic interventions and research for therapeutic interventions directly with biomarkers and genetic markers that we’ve tested for,” Davenport-Ennis said. “The nation is moving towards personalized medicine and we can get there, but we have to have more dollars to do it and we have to have more people enrolled in clinical trials.”
To turn these findings into practice and change the landscape of cancer care, Project Innovation plans to focus on three key areas (Box).
The campaign will tap the energy and ideas of cancer patients, advocates, healthcare professionals, biomedical researchers, medical innovators, payers, policymakers, and 21st century thinkers 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.
“I think it’s going to take the engagement of everyone in America,” Davenport-Ennis said.
By visiting Project Innovation’s website at www.projectinnovation.org, individuals and organizations can sign up to be a part of the program.
Within the first 30 days of launching the initiative, the website received over 6000 visits and word of the project reached over 300 million people, Davenport-Ennis said.
“Now is the time for us to finish the job that was started more than 50 years ago.”