The Presidents Cancer Panel Commemorates 50 Years of the National Cancer Act

NCA 50 Reflections

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

Benno C. Schmidt Sr. was the first chairman of the President's Cancer Panel, from February 1972 - February 1978.

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.

Health Disparities in Cancer Part 1

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

Dr. Harold P. Freeman was chairman of the PCP from 1991 to 2000.

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.

Historically, differences in medical outcomes such as these were attributed to innate biological differences between people of different races. However, by the mid-1990s advances in genetics had indicated that there is little genetic variation between human populations. In fact, most genetic variants identified to that point could be found among members of the same population.

It is in this context that the President’s Cancer Panel (PCP) convened a meeting in 1997 titled “The Meaning of Race in Science—Considerations for Cancer Research.” This meeting brought together experts who discussed research on the history of racial classifications and their use, how well social definitions of race related to human genetics, the use of racial and ethnic classifications in scientific research, and the scientific and societal implications of race in cancer research.

PCP Chairman Dr. Harold P. Freeman reported the results of the meeting to President Clinton. In his letter, he identified four key findings:

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.

Significant progress has been made against cancer. As of 2018, the overall cancer mortality for Black Americans saw a 37% reduction compared with 1990. However, even today Black Americans have a 13% higher mortality rate than White Americans. Since 2000, data for other races and ethnicities indicate that American Indians/Alaska Natives, Asians/Pacific Islanders, and Hispanics all have cancer mortality rates lower than Black and White Americans. Although the 15% of genetic variation that occurs between populations can explain some differences in cancer outcomes, it is not the full story.

Establishing that race is a social rather than a biological construct is important because it shows that disparities in cancer outcomes are not predetermined by race. If race isn’t the sole factor in cancer health disparities, what is? This question will be addressed in the next part of this series, “Voices of a Broken System.”

Health Disparities in Cancer Part 2

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

PCP members in 2001. Left to right: Dennis J. Slamon, M.D., Ph.D., Frances M. Visco, J.D., Harold P. Freeman, M.D.

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.

Through these conversations, the panel identified three major obstacles that prevented patients from receiving effective cancer care:

1. Inequitable access to cancer care

“Because the cancer was so rare, there was no one in Rapid City, [South Dakota] who was qualified to do the surgery ... so she was sent to Portland, Oregon ... unfortunately, there weren't funds available to help her with the transportation and everything. So there were fundraisers that had to be done. So it took almost five months to get enough money together to get her up to the hospital and her husband to stay there with her. And after the surgery the doctor came in and said, "I hate to tell you this: If you had been here four months ago, we could have gotten it all and you would be free from cancer. But it's too late now and you have a year to live."

- Dolly Randles, cancer survivor, describing her daughter’s cancer experience

It is generally more difficult to support state-of-the-art facilities and specialists in rural, frontier, geographically isolated, or impoverished inner-city areas. This makes it difficult for people living in these areas to access the same services and quality of care found in more affluent regions. Delays in care can have serious repercussions, as Dolly’s story shows.

2. Inability to pay for care

“I had to go through a reapproval process [for Arizona state medical assistance]. In January, the government, Social Security, gave me a $15 raise a month. I went from $599 to $614. I was 66 cents over the limit, and they took away my medical insurance.”

- Catherine Danielson, stage IV throat cancer survivor and single mother of four

In 1998, 18.3% of the country did not have health insurance. Even those with insurance often found that treatments were either not covered or required such high co-pays that cancer care was still unaffordable. There are also many expenses that insurance does not cover, such as travel, child or family care, and missed work.

3. Culture and bias in cancer care

“My gynecologist had retired, and so I found a new one. I told him of my complaints. He checked me and asked me whether I had any STDs [sexually transmitted diseases] in my younger life, to which I said no. He almost insisted that it had to be so ... I was given the diagnosis of a urogenic bladder and I was treated for that with no improvement ... my situation got so bad that I called the doctor, complained so strongly, that I was eventually sent for an MRI scan, which revealed a large cancer, which had invaded my pelvic organs ... You see, the learned opinion that all black women have STDs prevented a correct diagnosis for my disease, which took three years to do.”

- Mavis A. Alleyne, cervical cancer survivor, New Mexico

The report found that “older, minority, and poorer patients tend to receive substandard care and have less favorable outcomes than those who are younger, white, or more affluent.” While some disparities can be attributed to economic factors, the PCP found that bias alone can contribute to poorer health outcomes. Mavis’s story shows how bias can affect medical decisions and delay diagnosis and treatment.

Even cultural misunderstandings stemming from lack of education can create barriers to care. It is important for health care providers to develop trust with their patients to allow for open conversations and implementable treatment plans. Speakers shared with the PCP how health care providers who are not familiar with the culture and customs of their patients may find it difficult to establish trusting relationships with their patients.

To address these challenges the PCP recommended efforts to:

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.

In the 20 years since the Voices of a Broken System report was published, important progress has been made to reduce the barriers identified by the PCP:

1. Inequitable access to cancer care

There have been significant advances in the technology and accessibility of telemedicine. As of December 2019, the Federal Communications Commission estimates, 99% of Americans (including 97% of those in rural areas) have access to broadband internet. Federal programs, such as Lifeline and the Emergency Broadband Benefit Program, also provide financial support to low-income households for phone and internet access.

Beyond telemedicine, efforts have been made to bring cancer care to underserved areas. NCI has a long history of supporting some of these programs. Many of these efforts were consolidated in 2014 to establish the NCI Community Oncology Research Program (NCORP), a network of institutions that conduct clinical trials and cancer care delivery research in community settings, where most patients receive their care. NCORP clinical trials are on a range of topics, including cancer prevention, supportive care and symptom management, screening, and surveillance.

2. Inability to pay for care

The Affordable Care Act (ACA) was a significant step in improving access to health insurance. In 2001, an estimated 39.9 million (18.3%) of Americans under the age of 65 were uninsured. By 2010, the year the ACA was enacted, this number had increased to 48.2 million (18.2%). As of 2020, the number of uninsured Americans under 65 has decreased to 30.0 million (11.1%).

Despite this progress, more work needs to be done—25% of American cancer survivors report difficulties paying medical bills.

3. Culture and bias in cancer care

Important work has been done to address bias and cultural misunderstandings in cancer care. In 2001, NCI established the Center to Reduce Cancer Health Disparities (CRCHD) to help reduce the unequal burden of cancer. One of CRCHD’s primary activities is supporting research to better understand the causes of and solutions to cancer health disparities.

Progress has also been made to increase diversity in the cancer care and research workforce. Since 2002, the number of underrepresented minorities enrolled in medical school has increased. However, the physician workforce still does not reflect the demographics of the US population. Efforts to improve this trend include CRCHD’s Continuing Umbrella of Research Experiences, a family of programs with diversity-enhancing training and career development opportunities. More recently, NIH announced the UNITE initiative to establish an equitable and civil culture within biomedical research and reduce barriers to racial equity in the workforce. NCI has also launched an Equity and Inclusion Program.

There have also been improvements to disparities in cancer outcomes. In 2001, Black Americans had a 26% higher cancer mortality rate than White Americans. As of 2018, this has decreased to a 13% higher cancer mortality rate.

Voices of a Broken System highlighted broad problems that affected people across the nation. The final part of this series on health disparities will look at the cancer challenges faced by specific groups of people in the PCP report, Facing Cancer in Indian Country: The Yakama Nation and Pacific Northwest Tribes.

Health Disparities in Cancer Part 3

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

"One of the scientist we met with the other day... was from EPA [Environmental Protection Agency]. She said, if you eat 100 pounds of fish a year out of the Columbia River, we could not guarantee how long you would live."
— Bob Brisbois, Business Council, Spokane Tribe, Washington

Fish in the Columbia River basin have been a major source of food for the Yakama and other nearby tribes for generations. However, the river has been contaminated with chemical and radioactive pollutants. One of the most significant sources of this was the Hanford Nuclear Site, which was once used to generate plutonium. Pollutants from this and other sources have been detected in the fish in the river, meaning that the people who rely on the river for food and eat those fish are also being exposed to the same toxins.

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.

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