8 Priorities to Deliver the Oncology System Patients Deserve
While cancer as a disease is immensely complicated in its origin and development, it has one simple advantage: it is completely focused on the patient. It is not distracted by culture, history, budget fights, ego, profit, intellectual property, tenure or institutional biases — all the things that distract from most effectively studying, understanding and treating it.
There is reason for hope in the global effort to defeat cancer. Just this week, headlines from the annual American Society of Clinical Oncology punctuate what’s possible and within reach — immunotherapy’s game changing impact on survival rates for some cancers, new mechanisms to detect cancer early, and exciting collaborations bringing new solutions to stubborn, old problems.
Despite this incredible progress, it doesn’t take cancer patients long to list many of the barriers that still stand between where we are now and ending cancer as we know it. If you or a loved one is diagnosed with cancer, you will likely face the shortcomings in the oncology care system as you take on the fight of your life and attempt to navigate a complicated web of tests, treatments, financial shocks, and decisions most of us are ill-equipped to make.
That is why the Biden Cancer Initiative is dedicated to bringing a sense of urgency to building the cancer research and care system that all of us deserve (and that most people assume we have) — a system that can better prevent, detect, diagnose and treat cancer and provide the social, emotional and financial support necessary for cancer patients to survive cancer and get back to living their lives. It is our responsibility to ensure that all cancer patients, no matter where they live or who they are, receive the best care possible.
As part of the White House Cancer Moonshot, and now at the Biden Cancer Initiative, we have inspired and supported the launch of more than 100 new pilots and partnerships to improve patient experience and outcomes. These pioneering examples (e.g. Family Reach, St. Jude Children’s Hospital, University of Florida — ReMission Summit, Angel Flight West) of how to double our rate of progress need to become the norm if we are to deliver on the hope felt by cancer patients and their families.
We have identified 8 key issues we can address together that will make a profound difference in patients’ lives today:
- Increase HPV vaccine use and effectively prevent HPV-related cancers.
More than 40,000 people are diagnosed each year in the United States with a Human Papilloma Virus (HPV)-related cancer. For over a decade there has been a vaccine that could prevent up to 100% of cancers caused by HPV.
If we increased use of the HPV vaccine two-shot series from current levels of about 50% to 90% in the recommended population, which includes 11–12-year-old boys and girls, we could nearly eliminate HPV-related cancers in a generation. We have a vaccine that can prevent cancer, and it should be a public health priority for all young people to receive the vaccine.
2. Build a health information system to serve patients, not only payers.
The deployment of our current electronic medical record system resulted from an approximately $35 billion investment of tax payer dollars meant to improve care and prevent medical errors that were endemic in a paper-based medical records system. Despite the promise, electronic medical record companies who designed the systems and health care providers who bought them created a system that prioritizes billing over improving patient outcomes.
All Americans have the right to demand that their investment in electronic medical record systems actually improve their care. Is it too much to ask that our electronic medical record system be at least as efficient as the record keeping systems for our banking and investment data?
The organizing principle for our health data system should be — must be — that health data belongs to patients. Period. All of us, and our loved ones at our request, should automatically have access to our medical records each and every time we interact with the medical system. Cancer patients should receive their data in an electronic, easy-to-read and easy-to-transfer format so they can use it to improve their outcomes, get a second opinion, find a clinical trial, or contribute their data to research.
3. Share knowledge and data, especially that resulting from federally-funded research.
Today, valuable data and new discoveries are trapped inside institutions for years, if not decades. We must break down the data siloes that exist — even between individual laboratories — so that the entire research community and ultimately patients can benefit from the collective knowledge of the field. Like finding new patterns in the stars, data scientists may be able to find why one treatment works for some patients with a certain diagnosis and not others by seeing comprehensive population-level data for cancer. This is within our wheelhouse — the federal funding agency for cancer research, the National Cancer Institute (NCI), has helped to build cross-institution data repositories and can require data sharing and open publication access plans for federally-funded research as they have for Cancer Moonshot grants. This is an essential first-step.
4. Reduce cancer patient drug copays to zero.
Only in health care do we ask who you are before determining how much you should pay for a service or product. Based on your insurance coverage, the cost of a cancer drug can vary wildly. We can talk all we want about the list price of a drug and how that might be too high for some cancer treatments (and we absolutely should, some treatments are now hundreds of thousands if not millions of dollars) but in reality, whether a drug is priced at $400,000 or $50,000, if you earn $30,000 a year and your out-of-pocket cost for a single prescription is $5,000, the scenario is untenable.
We could start by reducing the copay to zero for cancer drugs for the approximately 250,000 people on either Medicare Part B without supplemental insurance or Medicare Part D without a low-income subsidy — Americans who make, on the high end, approximately $30,000 a year and are putting off treatments or losing their homes trying to survive cancer. After all, copays were designed to suppress use of brand name drugs when generics are available or to discourage use of vanity or lifestyle drugs. Cancer patients often have one drug available, if that, for their condition.
This principle of reducing or eliminating patient out of pocket costs for oncology drugs should then apply beyond this most at-risk population. When asked, pharmaceutical companies say they are willing to subsidize low income or underinsured patients, but currently are prohibited from doing so in Medicare (it is allowed for patients with private insurance). Eliminate cancer copays or let the healthcare system subsidize out-of-pocket drug costs for cancer patients in need.
5. Build a standardized oncology patient navigation system.
Over the past decade, more and more cancer patients have turned to patient navigators to guide them through their cancer care and doing so has shown to improve their experience and health outcomes.
But patient navigation continues to be at the edge of care, not a central component, and currently there are little to no set standards in place for these services. To incorporate navigation as part of oncology care, it must adopt standard definitions, define uniform best practices, provide accreditation, delineate roles, standardize evidenced-based metrics to measure return on investment, clinical outcomes and patient experience, and address issues related to policy and payment.
Every patient deserves a well-supported guide for their journey that helps them direct their care on their terms.
6. Ensure every cancer patient has access and the opportunity to enroll in clinical trials that work for them.
We desperately need a cancer clinical trial system that is accessible to all patients and speeds the delivery of new treatments for cancer. This will require rebuilding the national clinical trial database (clincaltrials.gov or ct.gov) to work for patients and community providers, not just researchers and pharmaceutical companies.
Clinicaltrials.gov was built as a repository for clinical trial information for researchers and the public, but now that patients and health care providers are relying on that information to find trials as a care option, its limited searchability and incomplete information have become serious weaknesses that are affecting patients.
It is time to use a common language for listing information essential to matching to a clinical trial, such as inclusion and exclusion criteria, and require timely updates to the trial listings so patients, their caregivers, and their oncologists have up-to-date information. This is a solvable problem, and one in which tax payers have already heavily invested. There are companies and organizations developing applications that use real words a patient would know about their cancer and deliver digestible trial reports a patient could then discuss with their oncologist, but the source data is still a problem — and each entity is spending much of their time and budget on recreating the same resource. We announced at the American Society of Clinical Oncology 2019 Annual Meeting, a new collaboration to create a shared platform where all information about clinical trials can be stored and accessed for patient matching and other data mining.
We don’t need to just make the government reporting site more user-friendly, we need to include data that matters to patients like the length of a trial and the types of tests they will undergo. Let’s standardize language and ensure that the entries are up-to-date. It’s time ct.gov work for patients.
7. Prioritize progress against rare and pediatric cancers.
While each individual type of rare cancer or pediatric cancer affects small numbers of people, together they affect millions. The current state of research into pediatric and rare cancers represents a market failure of incentives and rewards. There is no greater value proposition in health than saving the life of a child; yet we treat research in pediatric cancers as something companies must do only when a drug shows efficacy in adults for adult conditions. For too long, rare and pediatric cancers have depended on the “kindness of strangers” for funding and progress. It is time to bring these efforts into the mainstream of research and development.
8. Realize the promise of the Cancer Moonshot Blue Ribbon Panel recommendations with effective funding mechanisms.
The NCI Blue Ribbon Panel recommendations captured the energy and attention of a large portion of the cancer research system. The recommendations they presented in 2016 outlined highest priority areas according to researchers that offer great promise in making progress against cancer and should provide a roadmap for where the Federal government doubles its efforts. Many of them can’t be achieved through traditional grant mechanisms.
We have run experiments through the federal research funding agencies, such as the National Cancer Institute, as to how to fund a broad range of projects, people, and institutions, how to pay for success, invest in talent and bold ideas, move research findings into the development of new companies and new products or treatments, and solve grand challenges, and yet most of these programs stay at the edges of the agencies, and receive less than 5% of the budget.
We have evidence of success in outcomes for many of these innovative approaches to funding. It is time to implement them more widely, with more substantial funding, to achieve the goals of the Cancer Moonshot Blue Ribbon Panel. Additionally, many of the recommendations outlined in the Cancer Moonshot Blue Ribbon Panel report called for shared national infrastructure or national resources that would propel the field forward. Fully implementing those recommendations would be a good place to start to create a “National Oncology Laboratory” to accelerate cancer research progress.
Much of this progress could be driven by cancer centers large and small and other healthcare providers who serve oncology patients. We are very interested in developing a system–similar to a LEED certification that provides patient-gold, silver, and bronze recognition. This would publicly recognize those hospitals who take the actions described above that deliver on the promise of a cancer research and care system that puts patients first — that delivers their data to them automatically along with a useful summary, that shares research data with other institutions, that integrates effective clinical trial matching, that reaches into communities facing disparities in cancer incidence and outcomes, and that builds and executes an effective patient navigation system, and more.
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This may sound like a hefty agenda, but we have seen the entire cancer community respond to even more difficult challenges in the past — and the alternative of the status quo for patients is not acceptable. We believe we could deliver on the promise of improved patient care and outcomes, of systems that are more collaborative, that provide services that meet 21st century expectations of efficiency, that reduce or even eliminate disparities in cancer patient outcomes, and put patient’s needs ahead of bureaucracy or personal gain — if we continue to come together and have the collective will to bring urgency to implementing change.
We will share updates in real time on how we can work together to advance progress toward these goals. In the meantime, let us know what more you are doing to contribute by responding in this publication or submitting a new commitment.
