You are here
The Presidents Cancer Panel Commemorates 50 Years of the National Cancer Act
Reflections on the 50th Anniversary of the National Cancer Act
"We are not in search of a magic bullet, but rather are attempting to mobilize the best brains available in this nation and the world to ensure that they have an opportunity to make their maximum contribution to the cause of solving the cancer problem and of minimizing the time required for the solutions to benefit the cancer patient."
-Dr. Benno C. Schmidt Sr., first chair of the President’s Cancer Panel
When President Richard Nixon signed the National Cancer Act of 1971, the United States put in motion a coordinated system of federal and nonfederal organizations and partners to address the nation’s cancer burden. The act expanded the authority of the director of the National Cancer Institute (NCI) to plan and develop a National Cancer Program that included NCI, other research institutes, and other federal and nonfederal programs. The same act also expanded NCI to its current form and provided funding for fifteen additional cancer research centers, local control programs, and an international cancer research data bank. The act also established the President’s Cancer Panel (PCP).
Figure 1. Representation of the National Cancer Program and its many stakeholders.
The PCP is a committee of three members who are appointed by the President to advise on the progress of the National Cancer Program and identify barriers to progress. Despite the close connection the panel has to NCI, the PCP’s work is independent and has a much broader scope. This can be seen in the diverse subjects that the PCP has discussed over the last 50 years. Some examples include:
- In 1974, the PCP expressed concern about the stagnating budgets of the other National Institutes of Health (NIH). While the budget of NCI had substantially increased following the ratification of the National Cancer Act, the same did not happen for the other institutes; in 1974, NCI’s budget was almost five times larger than the budget of the National Institute of Allergy and Infectious Diseases. The panel recognized the importance of a strong foundation of research across fields to battle cancer and warned that "neither the cancer program nor biomedical research in general can thrive if these institutes are not healthy.” In the years since, Congress has invested in biomedical research across all of the National Institutes of Health, and the NIH's overall budget in 2020 was $42 billion dollars.
- In 1996, the PCP recommended that participation in clinical research ought to be a part of the standard of care for cancer. This is now reflected in the guidelines of the National Comprehensive Cancer Network, a nonprofit organization that develops cancer treatment guidelines.
- In 2012, the PCP recommended that states increase access to human papillomavirus (HPV) vaccination services by allowing pharmacists to administer the vaccine. As of 2018, 39 states and the District of Columbia expressly allow pharmacists to administer the HPV vaccine.
- In 2016, the PCP identified a lack of internet access was preventing patients from accessing health information and recommended that the Federal Communications Commission (FCC), internet service providers, and nonprofit organizations support programs to increase internet access. Although more work remains to be done, the FCC estimates that as of 2019 the number of Americans living without access to broadband internet has decreased to 14.5 million, a 45% decrease from 2016.
In 2020, the PCP identified cancer screening as an essential issue that will need additional support and innovation. Early detection of cancer is one of the most important factors in a positive outcome. However, the COVID-19 pandemic has caused a significant decline in cancer screening and it has been projected that this could lead to at least 10,000 excess deaths from breast and colorectal cancers alone. As such, the panel’s 2021 report will be on this important topic.
The COVID-19 pandemic revealed existing challenges in our health care systems and caused new ones, especially regarding cancer screening. 2021 marks the somber occasion of COVID-19 becoming the number one cause of death in the United States. However, reflecting on the 50th Anniversary of the National Cancer Act and the successes we have achieved, it reminds us that coordinated work to improve research and access to prevention, screening, and treatment can have transformative results.
Throughout its history, the President’s Cancer Panel (PCP) has explored the causes of and possible solutions to disparities in the nation’s health care system. This blog series will explore three PCP reports focused on this important topic.
Health Disparities in Cancer Part 1: The Meaning of “Race” in Science
"Mr. President, we conclude that race does not exist from a biological perspective, but that racism, rooted in the social concept of race, does exist."
-Dr. Harold P. Freeman, in a letter to President Clinton in 1997
It has been known for some time that the burden of cancer does not affect all populations equally. In 1975, 4 years after the signing of the National Cancer Act, the overall cancer mortality rate for Black Americans was 20% higher than for White Americans. Fifteen years later in 1990, this disparity was even greater, with Black Americans facing a cancer mortality rate that was 33% higher than White Americans.
Figure 1: Overall Cancer Mortality Rate by Race/Ethnicity 1975–2018. Data from https://seer.cancer.gov. Data on American Indians/Alaska Natives, Asians/Pacific Islanders, and Hispanics were not available prior to 2000.
- Race as used in the United States is a social and political construct derived from our nation’s history. It has no basis in science or anthropology.
- Biologically distinct races do not exist. Indeed, there is no evidence that they have ever existed in the recorded history of the human community.
- Neither is there a basis for racial classification. Modern technologies for measuring and conceptualizing human variation reveal that approximately 85% of all variation in gene frequency occurs within populations or races and only 15% occurs between such populations.
- Racism, rooted in the erroneous concept of biological racial superiority, has powerful societal effects and continues to influence science. The cultural framework of societal, institutional, and civilizational values in which science is conducted, and the role science has played in constructing and legitimizing race and racism, must be recognized and addressed.
Throughout its history, the President’s Cancer Panel (PCP) has explored the causes of and possible solutions to disparities in the nation’s health care system. This blog series explores three PCP reports focused on this important topic.
Health Disparities in Cancer Part 2: Voices of a Broken System
" No person in America with cancer should go untreated, experience insurance-related diagnosis or treatment delays that jeopardize survival or be bankrupted by a cancer diagnosis. Yet these very things are happening to far too many of us. The problems of cancer care in America are not theoretical, analytic, or abstract—they are real problems affecting real people."
-Executive summary, 2001 PCP report, Voices of a Broken System: Real People, Real Problems
In 2000 and 2001 the President’s Cancer Panel (PCP) went across the nation to learn about the challenges faced by people with cancer. The PCP met with cancer patients, survivors, family caregivers, patient advocates, volunteers, and health care professionals who provide cancer care. Many of their stories were included in the final report Voices of a Broken System: Real People, Real Problems.
- encourage telehealth technologies to reach low-resource areas,
- provide coverage to the uninsured,
- develop federal policies to minimize bias in the provision of cancer care, and
- encourage more members of underserved communities to enter the medical field.
Throughout its history, the President’s Cancer Panel (PCP) has explored the causes of and possible solutions to disparities in the nation’s health care system. This blog series explores three PCP reports focused on this important topic.
Part 3: Facing Cancer in Indian Country: The Yakama Nation and Pacific Northwest Tribes
"Indian communities have inadequate resources to conduct cancer education, encourage cancer screening and prevention, and help patients obtain cancer-related care, either within the IHS [Indian Health Service] system or in the non-Indian community... Facing cancer in Indian Country should not be more arduous than it is elsewhere in our nation”
—PCP, letter to the President
“We need to have someone not only get the data... but do something with that data. Something that is productive. Something that causes services to become available to us. Something that causes the Indian Health Service to have more care providers for us.”
—Anita Pimm Swan, breast cancer survivor and wife of bladder cancer survivor, Yakama Nation, Washington
In 2000 and 2001, the President’s Cancer Panel (PCP) held a series of regional meetings to explore the barriers that prevent Americans from receiving cancer care. The testimony gathered at these meetings led to the 2001 report Voices of a Broken System. During one of these meetings, Mr. Joe Jay Pinkham, a Yakama tribal elder and cancer survivor, invited the PCP to visit the Yakama Nation to learn firsthand of the challenges faced by the Yakama and other Pacific Northwest tribes. Dr. Harold P. Freeman, the chair of the PCP, visited the Yakama Nation Reservation over 2 days in 2002. The meeting was attended by tribal elders and members of the Yakama Nation and other tribes in Alaska, Idaho, Oregon, and Washington. There was also testimony from health care and social service providers, officials of the Indian Health Service (IHS), community epidemiologists and researchers, advocates, and state legislative staff. The final report, Facing Cancer in Indian Country: The Yakama Nation and Pacific Northwest Tribes was the result of this testimony. In this report, the PCP made several recommendations to improve Native American health. Three are highlighted below:
Recommendation 1: Funding for Indian health care through the Indian Health Service (IHS) must be increased.
"We only have four physicians taking appointments. That leaves approximately 5,000 plus patients per doctor. When you talk about cancer prevention how can one prevent cancer when you cannot even keep up with the onslaught of patients coming through the door? When you cannot get an appointment for two months?"
— Rex Quaempts, M.D., family physician, Indian Health Service; member, Yakama Nation, Washington
"It took me six months to get a referral out because I am not a Quinault but I lived in their service area, [and] my Quileute tribal service area could not give me the referral because I was out of jurisdiction of their service unit. Things like that need to be looked into and addressed because a lot of times we cannot marry someone from our own reservation because we are all related in one way or another so you have to go look outside of your reservation to go marry someone you are not related to.”
— Ann Penn-Charles, breast cancer survivor; community health representative, Hoh Indian Tribe, Washington
"...They had drained out five liters of liquid from her stomach. They found a tumor that was the size of a grapefruit and four more that were the size of walnuts... and all of this, you know, I think could have been prevented if they would have listened to what she said about her stomach hurting... I am thankful that the IHS is there, but, you know, when a person hurts in their body a lot of times they think they are there for drugs"
— Tina Kalama Aguilar, warm Springs Tribe, Oregon, describing the experience of a friend with ovarian cancer
The IHS is an agency within the Department of Health and Human Services that provides health services to American Indians and Alaska Natives. Many members of the Yakama Nation live in rural regions and rely on facilities operated by the IHS. Unlike Medicare and Medicaid, the IHS is not an entitlement program, and its budget must be appropriated by Congress each year.
The PCP found that the IHS did not have sufficient funding to fulfill its mandate and that there was a significant shortage of staff and resources at IHS facilities. In 2001, the IHS spent $1,776 per user of its services. By comparison, the Veterans Health Administration spent $4,801 per user that same year, and in 1999 the Federal Bureau of Prisons spent $3,241 per inmate on health care.
This figure from facing Cancer in Indian Country shows the health expenditures per user of different federal health services. Notably, IHS spending per user in 2001 was only 60% of health spending for federal employees of the IHS.
The situation has improved since 2003. The 2010 Affordable Care Act (ACA) had a positive impact on the IHS in several ways. The ACA included the permanent reauthorization of the Indian Health Care Improvement Act, which contains several provisions to empower the IHS to support Native American health. The increase in Americans with insurance coverage since the passage of the ACA has also benefited the IHS. In addition to funding through congressional appropriations, IHS is able to bill patients’ insurance, such as Medicare, Medicaid, and private insurance. Between 2013 and 2018 the proportion of patients at IHS facilities with insurance grew from 64% to 78%. This has increased revenue through billing by over 50%, allowing IHS facilities to expand services and hire more staff.
There have also been amendments to cancer screening and treatment programs to ensure that Native Americans and tribal organizations can take advantage of them. For example, the National Breast and Cervical Cancer Early Detection Program provides funds for cancer screening in underserved populations. American Indian and Alaska Native tribal organizations have been eligible for this program since 1993. In 2001, Native Americans screened through this program became eligible for treatment through Medicaid.
Between these reforms and increased congressional appropriations, the Government Accountability Office found that in 2017 IHS spending had increased to $4,078 per patient. However, this is still short of what is seen in similar agencies. That same year, for example, the Veterans Health Administration spent $10,692 per patient.
Recommendation 2: Increased efforts should be undertaken to develop more accurate data on the cancer burden experienced by native Americans in the Pacific Northwest
"The only statistic I was given to bring here is out of the last 40 deaths in Warm Springs, 15 of them [37.5%] were due to cancer... we are catching them too late... our people need to understand that. The way to help them to understand that is to increase awareness..."
— Geneva Charley, community health information specialist, Warm Springs Tribe, Oregon
National data at the time of the PCP report suggested that cancer incidence was lower in American Indians and Alaska Natives than the national average, while cancer mortality was higher. However, the PCP believed that the actual number of cases and mortalities were likely higher than the data indicated. One substantial challenge was that many medical records misclassified American Indians as another race.
Since then, there have been several efforts to improve the quality of data on cancer incidence and mortality in Native Americans, especially in the Pacific Northwest. For example, one team has corrected the race in death certificates by linking them with medical records. Efforts such as these have allowed registries to have much more accurate information about cancer in Native Americans, including differences between geographic regions.
Recommendation 3: Additional research is needed to better understand the possible relationships between environmental exposures and cancer in Pacific Northwest Native Americans
"Plutonium is one of the most hazardous materials in existence. One invisible speck inhaled into the lungs can cause cancer. Hanford produced 74 tons of plutonium."
— Russell Jim, manager, Environemental Restoration/Waste Management Program; elder, Yakama Nation, Washington
— Bob Brisbois, Business Council, Spokane Tribe, Washington
This figure from Facing Cancer in Indian Country shows the presence of hazardous waste sites in Indian reservations and in fishing sites. Data taken from the US Environmental Protection Agency report, Columbia River Basin Fish Contaminant Survey 1996-1998 (EPA 910-R-01-006).
Unfortunately, similar problems exist for tribes in other parts of the country. Between 1944 and 1986, nearly 30 million tons of uranium ore were extracted from Navajo lands in the Southwest United States under leases with the Navajo Nation, and several watersheds were polluted. The Sequoyah Fuels Corporation uranium processing plant in Oklahoma, now decommissioned, caused soil and groundwater contamination in Cherokee land.
Since 2003 there have been several projects to remediate pollution in Native American land. The Columbia River Restoration Program, established when Congress amended the Clean Water Act in 2016, is a grants program that supports environmental protection and restoration projects throughout the Columbia River basin. The EPA is supporting cleanup efforts at abandoned uranium mines on Navajo land. Finally, radioactive waste from the Sequoyah Fuels Corporation has been removed
Despite this progress, significant challenges remain. Climate change has had severe consequences for salmon populations in the Pacific Northwest. The loss of this traditional food source is a major threat to the way of life of Pacific Northwest tribes.
Conclusions
Nearly two decades have passed since the PCP published The Meaning of Race in Science, Voices of a Broken System, and Facing Cancer in Indian Country. In this time, significant progress has been made to reduce cancer disparities. Yet, work more remains to ensure that the burden of cancer is reduced for all, and the PCP will continue to shine a spotlight on these important issues.