Driven by discoveries of the molecular causes of cancer and revolutionary therapies, such as immunotherapy, the transformation of many cancer types into chronic, manageable diseases will become a reality during the next few decades. Despite headlines about precision and personalized medicine with targeted cancer drugs, genomics, and digital health, the real heroes of this battle are cancer patients and their families.
The exhaustive collection and consolidation of information, so-called big data, generated from patient registries and clinical trials are driving remarkable scientific breakthroughs. Why should cancer patients struggle financially, despite their major contributions? Why should families undergo economic distress while caring for the front-line soldiers of this battle?
Although progress is very encouraging, cancer will remain one the leading causes of death in developed countries. Lifetime risk statisticsreveal that one of every two men and one of every three women in the United States will be diagnosed with cancer at some point during their lives. We know how to prevent some types of cancer and we can cure many early stage cancers. However, we still cannot defeat most advanced cancers, just extending survival by mere months or a few years.
A human right
The World Health Organization (WHO) Constitution of 1946 declared that the “enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being.” The United Nations’ Universal Declaration of Human Rights of 1948 states, “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including medical care and necessary social services.”
Translating this set of rights into cancer care, every human being should be able to access key discoveries on prevention, early detection, and management of cancer. Providing basic health care to every cancer patient should encompass an expectation for full collaboration with the scientific and medical establishment. Cancer care legislation should balance the views of the healthcare professionals and stakeholders with the patient perspectives and basic needs of patients and their families. If this is a war, we need to have commanders and soldiers united with a single purpose, coordinating efforts and supporting each other.
An economic right
The costs of cancer care are staggering. The American Cancer Society reported that, in 2014, patients payed nearly $4 billion in out-of-pocket expenses. Moreover, the disease costs the United States $87.8 billion in related healthcare spending. Patients and insurers usually pay providers for each service performed. When several procedures and expensive cancer treatments are required in a short period of time, financial hardship or medical bankruptcy are all-too-frequently the result.
Cancer patients should be fairly compensated for becoming the center of the so-called digital health revolution. The integration of life sciences, physical sciences, mathematics, engineering, and information technology means that information from cancer patients can be obtained any time and anywhere through digital monitoring.
Combining electronic medical records, genomics, and demographic data makes every single patient a formidable source of scientific and medical knowledge. Sandra Horning, chief medical officer of cancer industry leader Genentech, declared, “Patients play a vital role as the inspiration and source of data to drive science forward. In exchange, they deserve a strong voice and commitment from the healthcare industry including timely access to breakthrough medicines.” As the most vulnerable and least organized group, the society should recognize and reward financially contributions of cancer patients.
A healthcare right
Scientists, academia, and industry are engaged in cut-throat competition — driven by the relentless pursue of intellectual property, as well as regulatory and commercial success. These achievements would not take place without patients participating in clinical trials and cancer registries, potentially sacrificing their lives or enduring serious adverse events. Data sharing, integration and collaboration requires trust and better communication, as well as a legislative framework to define the healthcare rights and duties of every stakeholder.
In addition, any comprehensive initiative to legislate cancer care should include provisions for prevention, early detection, and prognosis of cancer. We know that lifestyle and certain genetic abnormalities lead to greater incidences of cancer. Genetic markers that help determine the prognosis of many cancers, in turn, permit personalized treatments, which can pre-empt unnecessary therapies.
Why does cancer require special legislation, instead of diabetes or other chronic diseases? Because despite the strict regulation of the medical profession and bio-pharmaceutical industry, cancer is a rapidly changing field, with strong physician and industry bias toward the latest and most expensive procedures and treatments.
Cancer is not just a disease. It is a plague that can cripple individuals, families, and social networks. Not confronting the disease at its core, the cancer patient, will lead over time to a more fragile society. A legislative initiative will help those most vulnerable socio-economically, as well as anyone without a sizable financial cushion, which includes millennials and generation Xers less inclined to pay for cancer prevention or early detection programs.
What would go through you mind if you were told today that you had leukemia with a 2-year life expectancy? Wouldn’t you consider the impact of work disability, family care, maxed-out insurance deductibles, and significant out-of-pocket costs? Wouldn’t you feel at ease if you and your family were promised a financial safety net in exchange for your contribution to the advance of medical and scientific knowledge?
A Cancer Care Act would be a fair act of human solidarity.
Oscar Segurado, MD, PhD, Director of Medic Affairs Consulting LLC, has extensive global experience covering oncology, immunology and molecular biology in academia and industry settings.
The views of contributors are their own and are not the views of The Hill.