Moonshot 2.0 Looks to Focus on Caregivers, Learn From Patients

Danielle Carnival, PhD, addressed the National Comprehensive Cancer Network Policy Summit on Friday.

This article was originally published by The American Journal of Managed Care.

The Biden administration’s reboot of the Cancer Moonshot initiative, also called Moonshot 2.0, has clear goals: to reduce cancer deaths by 50% over 25 years and to “improve the experience of people and their families to living with and surviving cancer.”1

Doing so will require going beyond the traditional measures of success and truly learning from patients and caregivers living with cancer, Danielle Carnival, PhD, the Cancer Moonshot Coordinator in the White House Office of Science and Technology Policy, told those gathered Friday for the National Comprehensive Cancer Network Policy Summit, held in Washington, DC.

Over the past 20 years, Carnival noted, the age-adjusted death rate from cancer has dropped about 25%, aided by groundbreaking advances in treatments, prevention tools such as the human papillomavirus vaccine, improved use of screening that allows lesions to be removed at precancerous stages, and large decreases in long-term cigarette use, “especially in young people.”

Carnival, who served on the first Moonshot initiative in 2016, said it created 70 new partnerships and drove passage of the 21st Century Cures Act, invested $1.8 billion in research, and streamlined the FDA’s decision-making timeline for new therapies. “Despite progress of lives extended and lives saved, cancer is still the number 2 cause of death in America,” she said. “We lose more than 600,000 Americans a year to cancer, and 1.8 million families each year are devastated by a cancer diagnosis.”

But many issues remain. Cancer is often diagnosed late. Too little is done to prevent cancer. “We have stark inequities in access to diagnosis, access to treatments and trials, and inequities in outcomes,” Carnival said.

“We know too little about how to target treatments to the right patients,” she said and too many cancers lack good strategies for developing treatments, including childhood cancers.

Worst of all, “We leave most patients and caregivers to navigate the disease and its aftermath, including survivorship, on their own and we don't learn from the experiences of most patients.”

Those experiences include dealing with treatments that are too toxic and too unaffordable, insurance processes that are impossible to navigate, and survivorship plans that may be incomplete or nonexistent.

Addressing this list—tackling the medical, financial, and emotional burdens of cancer by providing support throughout diagnosis, treatment, and survivorship—represents a “shared agenda” for Moonshot 2.0, Carnival said.

To take on this agenda, the administration has created an interagency “Cancer Cabinet,” which includes representatives from HHS, the CDC, the Department of Veterans Affairs, and the Environmental Protection Agency, among other entities. In mid-September, President Joe Biden named former biotech executive Renee Wegrzyn, PhD, to head Advanced Research Projects Agency-Health, or ARPA-H, which will take on the bolder, riskier projects that the National Institutes of Health typically won’t pursue.2 Alongside these steps, Carnival said, Biden has signed an executive order on biotechnology manufacturing to ensure products are made in the United States.

One such effort includes a large clinical trial, she said, that “if successful, will identify effective blood tests for detection of 1 or more cancers, so that we can reach more people with early detection and get them into a pipeline to get follow-up and diagnostics.”

Such steps will help close “the screening gap” that results in some populations not receiving their diagnosis with cancer until it reaches later stages.

Broader parts of the Biden administration agenda, such as reducing the out-of-pocket costs for Medicare beneficiaries, “will impact tens of thousands of cancer patients who could see their prescription drug costs go down by thousands annually," Carnival said. Prevention efforts include new funds to clean Superfund sites and $200 million in CDC grants for cancer prevention programs that will “reach every state, US territory, and tribal organization.”

Private sector efforts and partnerships are working to improve equity in screening, too. Carnival listed projects across the country that included mobile and home screening projects and development of new tools in concert with pharmaceutical companies and groups that include the American Cancer Society and the National Minority Quality Forum.

In response to a question, Carnival said prior authorization and reimbursement challenges are definitely part of the agenda.

Carnival said the administration wants to hear from those directly affected by cancer and has set up a website, whitehouse.gov/cancermoonshot, which includes links for patients and families to include written or video testimony.

“The goals and priorities for the Cancer Moonshot must be informed by those with direct experience with cancer. So please share your stories of inspiration and knowledge,” she said. The Moonshot relaunch featured stories from 3 people with direct experience with cancer, “and those 3 individuals happen to be the President, the First Lady, and the Vice President of the United States. This is personal to them.”

References

  1. Fact Sheet: President Biden reignites Cancer Moonshot to end cancer as we know it. News release. The White House. February 2, 2022. Accessed September 21, 2022. https://bit.ly/3w14Ofg
  2. Klein E. What Joe Biden knows that no one expected him to. New York Times. September 18, 2022. Accessed September 21, 2022. https://www.nytimes.com/2022/09/18/opinion/biden-invention-arpa-h.html