Testimony of
Jan T. Liu, MHS
Jan T. Liu
Policy Analyst
Asian & Pacific Islander American Health Forum
450 Sutter Street, Suite 600
San Francisco, CA 94108 Phone: (415) 964-9952
Fax: (415) 954-9999
Good morning, Chairwoman Berry and distinguished members of the Commission. Thank you very much for the opportunity to speak before you today.
My name is Jan Liu and I am with the Asian and Pacific Islander American Health Forum (APIAHF). APIAHF is a national advocacy organization dedicated to promoting policy, program and research efforts for the improvement of health status of all Asian American and Pacific Islander communities. APIAHF has been following California's proposed ballot initiative, "Classification by Race, Ethnicity, Color, or National Origin" very closely and we are extremely concerned about its impact on health and the enforcement of civil rights. As you probably know, this initiative would amend the California State Constitution to prohibit public entities from collecting or using data on race and ethnicity. The initiative could make it illegal for state/local health departments, county hospitals, educational institutions, and public universities to gather information for a variety of efforts. Furthermore, the initiative seeks to ban not just the collection of data, but would prevent the dissemination of data that is already collected, the use of data that is collected by other entities, and presentation of information based on race. We believe that any attempt to limit the amount of information that is collected on race, ethnicity and national origin will have a negative impact on minority communities and on the public’s health.
The collection of data on race and ethnicity is essential for creating sound public policies, ensuring the most efficient use of resources and addressing the needs of diverse communities. State and local public health departments have a legitimate interest and a responsibility in protecting and promoting the health of all people. Racial or ethnic data that is collected by public entities with regards to health is particularly important to understand and address the disparities that exist in almost every measure of health and well-being. Data on race and ethnicity are often used to target health interventions, design more effective outreach efforts, develop culturally appropriate health education programs and measure success in the elimination of health disparities.
Furthermore, data has been identified as one of the top priorities for Asian American and Pacific Islander (AAPI) communities by the President’s Advisory Commission on AAPIs. In testimonial after testimonial presented to the Advisory Commission, Asian American and Pacific Islander communities have asked for better data collection and dissemination to meet the needs of this very diverse and heterogeneous population. Failure to collect this data has resulted in exclusion from full participation in federal programs.
Probably nowhere are racial and ethnic disparities better documented and more disturbing than in the field of health. These disparities exist for all racial and ethnic groups, and in almost all areas in health and health care. Stark disparities exist in access to health care and health insurance, with Latinos and Korean Americans having uninsurance rates many times higher than the general population. Disparities exist in medical treatment and procedures. The non-partisan Institute of Medicine (IOM) recently published a report, which found that racial and ethnic minorities receive lower quality care regardless of income and insurance coverage.
Minorities were found to be:
less likely to be given appropriate cardiac medications
less likely to undergo bypass surgery
less likely to receive kidney dialysis or transplants
less likely to receive appropriate cancer diagnostic tests and treatments.
less likely to receive the most sophisticated treatments for HIV infection, which could forestall the onset of AIDS.
By contrast, they are more likely to receive certain less-desirable procedures, such as lower limb amputations for diabetes and other conditions.
Finally, and most importantly, we know that disparities exist in actual health outcomes.
§ Infant mortality rates and percent of low-birthweight of infants are higher for African- American women than any other racial group.
§ Asians Americans and Pacific Islanders have the highest tuberculosis rates of any other racial group.
§ Hispanic Americans are nearly twice as likely to be diagnosed with diabetes and 1.7 times more likely to die from it than non-Hispanic whites of similar age.
§ Smoking rates among American Indians or Alaska Natives (35%) are the highest among the major racial or ethnic groups. Nationally, lung cancer is the leading cause of cancer death among American Indians and Alaska Natives.
The question is not whether there are huge disparities in health by race and ethnicity, but rather, how can we work towards reducing and eliminating them. The key to eliminating these inequities in health is having the information necessary to understand and to address them, and for this we are dependent upon data.
A ban on racial and ethnic data would likely have similar consequences in the health and human services context as it would in other areas such as education, housing, and employment. Consider the real life example of a White patient at a county hospital, who filed a complaint alleging that services were not provided to him in a timely manner because of his race. In investigating the claim, the Office of Civil Rights actually obtained data from the hospital and was able to calculate the average length of wait times for patients by race. In the end, OCR found no differences in wait times by race, but without this type of information, claims of discrimination will go unanswered.
In another example, anecdotal evidence suggests that African Americans in a state Welfare to Work program may be more likely to be placed in lower paying, menial jobs with less opportunity for advancement. Without the collection of racial and ethnic data, it would be nearly impossible for those charged with the enforcement of civil rights to verify claims of discriminatory practices such as these.
All recipients of federal funding are required to comply with Title VI of the Civil Rights Act. Verification of compliance is dependant upon data and Title VI provides the legal foundation for the collection and reporting of racial or ethnic data by federal recipients. Yet, the Department of Health and Human Services (HHS) has few requirements or guidelines in place at this time. Any bans on the collection of data could negatively impact civil rights enforcement in programs where there is no clear mandate to collect race data.
The National Health Law Program and the Summit Health Institute for Research and Education, Inc. published a report in October of 2001, on the issue of federal laws, regulations and policies for the collection of data on race and ethnicity in the health context. Their examination of statutes that apply to HHS funding recipients found only two that explicitly require the collection of racial or ethnic data in health care services, and two in the surveillance of diseases. These statutes apply to the Maternal and Child Health Services Block Grant, a Substance Abuse and Mental Health Services Administration (SAMHSA) program for children of substance abusers, data collected by the Centers for Disease Control and Prevention on birth defects and developmental disabilities and data on lead poisoning. In addition to the statutes, there are also a small number of agency regulations that require the collection of data on race and ethnicity with regards to the Medicaid managed care program, the State Children’s Health Insurance Program, and the End Stage Renal Disease Program.
While these statutes and regulations would likely provide some protection against a ban on racial and ethnic data collection, it does not represent the vast majority of programs funded by and administered by HHS. In fact according to the Catalog of Federal Domestic Assistance, the Department of Health and Human Services funds and administers over 300 programs. Therefore, aside from the few exceptions mentioned earlier, enforcement of civil rights in the majority of federal health programs would be affected by a ban on racial data collection. The lack of a clear mandate for the collection of racial and ethnic data could result in the inability to enforce anti-discrimination laws in hundreds of HHS programs.
HHS currently already has the authority to require the collection of data on race and ethnicity to ensure compliance with Title VI. Under the Code of Federal Regulations [45 CFR 80.6(b)]:
Each recipient shall keep such records and submit to the responsible Department official or his designee timely, complete and accurate compliance reports at such times, and in such form and containing such information, as the responsible Department official or his designee may determine to be necessary to enable him to ascertain whether the recipient has complied or is complying with this part."
In the same way that federally mandated data collection in mortgage lending has helped us understand the problem of redlining, so too can data collection and reporting requirements shed light on discrimination in the health context.
First, bans on collection and use of data on race, ethnicity and national origin (including the proposed ballot initiative in California) would severely hurt public health efforts and civil rights enforcement in the health care context.
Secondly, clear mandate by the Department of Health and Human Services for the collection of such data could mitigate the impact of such bans.
Thirdly, the Department of Health and Human Services clearly has the legal authority to issue policy guidance requiring the collection and reporting of data on race and ethnicity by recipients of federal funding.
Therefore in the interest of reducing racial and ethnic health disparities and improving compliance with existing civil rights laws, we recommend that the Department of Health and Human Services immediately begin a process of creating policy guidance to require the collection of data necessary for civil rights enforcement. This process should recognize the different needs and circumstances of various recipients, yet provide some basic uniformity across programs and activities.
Efforts such as the initiative in California to limit the amount of information available for understanding health, education, employment and housing, only serve to inhibit our progress towards reaching our full potential. The issues of race, racism and discrimination in America are no doubt extremely complex. Our understanding of them and our ability to work towards equality will not be accomplished by ignoring our problems.
Thank you again for this opportunity to be here today. I would also like to extend my thanks to Alex Sun for his help in organizing this briefing. I would be happy to answer any questions.