Health Disparities in Cancer Part 2: Voices of a Broken System
PCP members in 2001. Left to right: Dennis J. Slamon, M.D., Ph.D., Frances M. Visco, J.D., Harold P. Freeman, M.D.
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.
"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 President's Cancer Panel 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.
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.