National Minority Cancer Awareness Week 2011 provided an opportunity for reflection on where we are with regards to eliminating cancer outcome disparities in minorities and the poor in the U.S., and reconsidering our current approach. Cancer is the second leading cause of death in the U.S. and cancer outcome disparities, or higher death rate and burden of disease, is a significant problem which afflicts mainly minorities and the poor, and in particular African Americans. Nationally, a total of 1,529,560 new cases and 569,490 deaths from cancer were projected for 2010. In the U.S. minorities are most often poor. U.S. 2010 census data indicates that the current minority population is approximately 112 million, and consists of almost 51 million Hispanics, 15 million Asians and 38 million African Americans, and also that Hispanics are the fastest growing demographic. In the United Kingdom where there is universal health coverage, lower socioeconomic status has itself been associated with worse cancer survival, but significant variations in the quality of cancer treatment are also known to exist. African Americans suffer the greatest burden of cancer for each of the most common types of cancer. For all cancers combined, the death rate is almost 25% higher for African Americans than for Whites. The relationship between race and health appears complex and the genesis of health disparities has been described as multifactorial. These facts have been recognized for more than a decade and have substantially shaped the national policy agenda. Minority health and health disparities research activities of the National Institutes of Health currently constitutes an annual budget of approximately $2.8 billion, and in FY 2010 the National Cancer Institute spent almost $275 million on cancer disparities.
Nonetheless, in a recent editorial in a major cancer journal, Edward E. Partridge, MD, president of the American Cancer Society, admits that “for over a decade, the American Cancer Society and others have attempted to reduce and ultimately eliminate cancer disparities in outcomes” in the U.S., however, “the undeniable truth, is that we continue to have disparities in mortality that in some cases, such as breast and colorectal cancers, have improved only minimally, if at all – and our collective efforts have not achieved the results that we want.” Dr. Partridge goes on to further elaborate on how the American Cancer Society should approach elimination of cancer disparities in the future (more on this later). He is correct that this issue should receive priority consideration as “ultimately, disparities represent failure to deliver equally to all segments of the population advances in knowledge and technology that positively impact outcome”. In addition, Otis W. Brawley, MD, Chief Medical Officer of the American Cancer Society has previously asserted that “a substantial body of work demonstrates that Black–White disparities in most cancers are due to the fact that a large proportion of minority and poor patients receive less than optimal care when compared with non-minority patients” and “studies suggest that for most cancers, equal treatment yields equal outcome among equal patients, and there is not equal treatment.” Dr. Brawley further explains that “if we are to decrease disparities in these diseases, we must work to get all people adequate treatment.” This position is strongly supported by a recent scientific report which shows that among African American and Caucasian Medicare beneficiaries with lung, breast, colorectal, and prostate cancers, no significant difference in mortality by race was observed among those who attended NCI Comprehensive Cancer Centers for treatment, suggesting that place of treatment may explain some of the cancer mortality excess observed in African Americans. In addition, the experience from clinical trials suggests that the only racial differences in treatment outcome may be from sex-related tumors.
These observations suggest that several important questions remain to be answered. Why do minority and poor patients with cancer receive less than equal and adequate treatment even when they have adequate insurance? What do NCI Comprehensive Cancer Centers provide that others do not? Why have methods which have been tried over the last two decades made little impact on producing cancer treatment equality? What should now be done to effectively close the gap in treatment equality as quickly as possible?
Unfortunately, the American Cancer Society does not fully address these salient questions in their new plan or take the lead on the issue of equal treatment, even though they have clearly identified this as a major problem. Instead they are promoting the community-based participatory approach as a key method to engage at-risk communities and eliminate cancer disparities, noting that this approach will reap benefits for the American Cancer Society. Of interest, Forbes.com lists net assets for the American Cancer Society in 2010 as $1.33 billion, with revenue of $897 million, and ranks them as the third largest nonprofit organization by revenue in the U.S. It is not unreasonable to think that this is probably the largest cancer-related philanthropic organization in the world – so should we not expect more of them? Dr. Partridge further suggests that “the Patient Protection and Affordable Care Act of 2010 eventually will eliminate cost as a barrier to access to quality care, opening the door for navigator and other programs that ensure that all patients with cancer have the opportunity for the highest quality care.” Access is certainly a critical issue, but recent data outlined in an article in the Wall Street Journal suggests that a substantial portion of those gaining coverage under this act will have Medicaid, and that outcomes for cancer patients with Medicaid may be comparable to, or as bad as, having no insurance at all. This is probably due to problems with low reimbursement and difficulty finding providers willing to accept Medicaid payment, and will likely disproportionately affect minorities and the poor. And measures to close the cancer survival deprivation gaps in the NHS in the U.K., where universal coverage and primary care have existed for decades, and a national Cancer Plan was enacted in 2000 to specifically address cancer outcome disparities, have shown little success. Hence the American Cancer Society may not be correct in their expectations under the new law. Beyond access, existing system constraints that impede equal treatment include chronic underfunding with significant structural limitations at institutions treating minority-underserved patients, including deficient administration, lack of mission focus, fragmented culture, inadequate quality, and poor infrastructure and services.
Furthermore, although much has been invested over the last decade by NIH/NCI in research, training and education, translation of results into elimination of cancer disparities outcomes remains questionable, and lacks timeliness and focus. If training by itself guaranteed standards of care, then for example, state professional regulation boards would not exist. Simply put, we will not be able to train our way out of cancer disparities, as these efforts must be joined with professional quality standards. Training of a particular demographic has also been a major focus of the NCI, but performance of NCI Comprehensive Cancer Centers and clinical trials suggest that the quality of treatment may be more important than who provides it. In addition, the path by which research influences policy is considered hazy and limited, at best. This is especially true since current NCI leadership appears to lack vision as to how to specifically translate research findings and take effective action to eliminate cancer disparities, as in evidence at the Center to Reduce Cancer Health Disparities, which is currently under the guidance of career bureaucrats. A slow deliberative process/approach to developing and implementing solutions may also encourage ‘rent seeking’ behavior by those dependent on NIH/NCI funding and fat indirect payments.
Hence the current situation appears to be widespread tolerance of significant systemic treatment inequality and misplaced policy focus which does not guarantee equal treatment and elimination of treatment inequity. Despite mounting substantial evidence from analog models that cancer treatment outcome disparities can be eliminated, and that equal treatment largely equates with equal outcomes, leading national organizations and professional bodies are thus far either unable or unwilling to take the lead and demand closure of existing gaps in cancer treatment equality, and continue to expend much effort on promoting awareness, further research, and training and education. Consumers of cancer care still lack the ability to see objective data on comparable provider performance for treatment of similar cancer types and level of disease in their communities. Hence those most at risk for disparities remain unaware of providers with the worse treatment outcomes. Furthermore, the situation is aggravated by incoherent disease-based advocacy which skews the national policy agenda and the lack of an effective lobby for minority and the poor with cancer. Notice that breast cancer which has substantive advocacy also has almost double the research funding compared to other major cancer types. An extreme example of misplaced policy is the Illinois tort immunity act for public employees and entities. It negates liability for injury resulting from failure to diagnose disease in a timely manner at a public provider health institution in Illinois. This act sets the tone for a low expectations public hospital culture that perceives no risk for shoddy cancer screening, diagnosis and treatment. Not only is this act anti-minority-underserved but it creates a system in which the employees themselves would never seek treatment because it is seen as inherently inferior and something provided for a particular class of people, so there is no moral hazard for substandard performance. This status-quo is also vigorously defended by a cadre of state’s attorneys, so there is little impetus for change.
The Cancer Foundation for Minority-Underserved Populations (CFMUP), a Chicago based non-profit focused on eliminating cancer disparities, proposes a novel business oriented solution which calls for executive action under Public Law 106–525 Title V Section 501(b)(2). CFMUP deems that this title already grants the Secretary of Health and Human Services the authority to mandate change to effect standards which produce cancer treatment equality in an action oriented and timely fashion for those who need it most. The executive order should develop and implement a new Equal Treatment Strategic Plan involving prompt deployment of modalities currently understood to achieve cancer treatment equality, in order to effectively improve cancer care services to affected communities in short order. The strategic plan should include certain mandatory elements in common practice at NCI Comprehensive Cancer Centers including: strong leadership in oncology practice; multidisciplinary cancer care; use of evidence-based clinical guidelines; measurement of adequacy of cancer treatment quality and data monitoring; and availability of National Cancer Institute supported clinical trials, and patient navigation services and programs for community outreach/education. In addition, a portion of funds currently available to the NCI for cancer disparities activities should be reallocated to support this new strategic plan and creation of a Coordinating Consortium Center. This Center would have responsibility to fund, support and coordinate HHS strategic plan activities at the local community level and report progress metrics back to HHS. The strategic plan should also include mandatory reporting on standardized cancer outcomes which should be available for public review, and annual review of existing data by the NCI to identify and recommend to HHS new modalities that produce cancer treatment equality and eliminate disparities. This would allow HHS to formally issue new annual directives and lead change in a timely manner.
The imminent reorganization and rationalization of the mammoth NCI clinical trials system shows that the NCI can make major changes to essential infrastructure and process when needed. This is what HHS needs to do to eliminate current disparities in cancer treatment. It is time that minorities, in particular African Americans, are guaranteed the minimum standard of equal and effective cancer treatment in their local communities.
The National Cancer Institute defines “Cancer Health Disparities" as adverse differences in incidence (new cases), prevalence (all existing cases), death (mortality), survivorship, and burden of cancer and related health conditions that exist among specific population groups in the U.S. People who are poor, lack health insurance, and are medically-underserved (i.e. have limited or no access to effective health care), regardless of ethnic and racial background, often bear a greater burden of cancer disease than the general population. In the U.S. minorities are most often poor, and importantly, African Americans suffer the greatest burden of cancer for each of the most common types of cancer, and for all cancers combined, the death rate is almost 25% higher for African Americans than for Whites.
main obstacles racial and ethnic minorities face to receiving health
care services relating to cancer prevention, early detection, and
high-quality treatment include: poverty and low income; inadequate
health insurance; geographic, cultural, and language barriers; high cost
of most modern effective cancer treatments; and racial bias,
discrimination and stereotyping (read more facts)