How bad data use and political battles threaten quality healthcare
By Martha Nakagawa, Pacific Citizen Assistant Editor
Inadequate data and the dangers of lumping all Asian Pacific Americans into one category presents a misleading status on APA health, which in turn prevents researchers from addressing the needs of the different APA communities, said researchers, medical doctors and healthcare providers at an inaugural APA health conference held at UCLA.
Many of the same people testified earlier at a panel before the National Center for Health and Vital Statistics Committee on Subpopulations, which is holding hearings throughout the United States for different segments of the population. The hearing on APA health was held at UCLA.
Dr. Vickie Mays, chair of the National Center for Health and Vital Statistics Committee on Subpopulations, said they are considering holding a second hearing for APAs in November. Part of the purpose of the hearings, Mays said was to determine whether the federal health and human services offices were in compliance with the collection of data on race and ethnicity as issued in 1997 by the Office of Management and Budget (OMB); whether those who use the data feel that it is working; and to find out if the federal government has the data it needs to determine health disparity.
“What we’re doing is we want to make sure there’s adequate data to monitor all the populations that we need according to the OMB guidelines,” said Dr. Nancy Breen, committee member and economist with the National Cancer Institute. “That means blacks, whites, Hispanics, Asians, Native Hawaiians and other Pacific Islanders. We’ve been having hearings with the smaller populations in which there might be potential problems, so with the Native Americans and Alaskan Natives.”
Mays said they will issue recommendations to the secretary of health based on the hearings. “We just had the hearings so I don’t even know in my head if it’s all clear or not, but I would say overwhelmingly, we heard that there is a need for data in some of the even geographically concentrated populations or smaller populations, so I think that without a doubt, that will be a definite recommendation.”
Where Public Health Fails Asian Americans and Pacific Islander Americans
Dr. Marjorie Kagawa-Singer, associate professor at UCLA’s School of Public Health and the Asian American Studies Center, noted that in 1985, the Secretary of Health published a report titled, “Task Force on Black and Minority Health,” in which APAs, as an aggregate, were considered healthier than all racial and ethnic groups in America.
“We know that is not true,” said Kagawa-Singer. “That is a myth…When you lump all of us together, those in highest need are totally invisible and inaccessible.”
To illustrate her point, she said although available data indicate that APAs, as an aggregate, have a low rate of infectious diseases, when APAs are separated by ethnicity, some groups have an unusually high rate of infectious diseases.
Mary Anne Foo, executive director of the Orange County Asian and Pacific Islander Community Alliance, noted that although heart disease was the number one problem among APAs, as an aggregate, “some Asian Pacific Islander ethnic groups have some of the highest rates of cancer than any other population in the United States.”
Foo said men of Filipino, Korean and Southeast Asian descent have the highest rate of lung and bronchial cancer in the United States. She added that Southeast Asian men also have the highest rate of liver cancer, with Vietnamese men having liver cancer 11 times that of white men.
Among Vietnamese and Korean women, Foo said they have the highest rate of cervical cancer in the United States. Japanese American women have the highest rate of breast cancer, said Foo.
“We want to give you this break out data so you can see that among certain populations, certain cancers are more prevalent,” said Foo. “It’s very important to disaggregate the data. When you put Asians and Pacific Islanders together, what happens is that the rates are lower, and you don’t know which populations are in need.”
Dr. Timothy Pan, board-certified internist and staff physician at the UCLA Center for East-West Medicine, said APAs, as an aggregate, had a lower rate of heart disease than the national average, but when APAs were disaggregated, the Filipino, Samoan and Chamorros (natives of Guam) had “rates that are way off the scale, more than African Americans.” Yet while there are a number of heart health literature geared towards African Americans, Pan said there are none for vulnerable APA groups.
Dr. Steven Han, professor of medicine and surgery at UCLA’s Pfelger Liver Institute, focused on the high prevalence of Hepatitis B in the Asian community. Although Hepatitis B affects roughly 0.3 percent of the American population, more than half the estimated 1.5 million carriers in the United States are APAs.
Han said until recently researchers did not know how 35 percent of Hepatitis B patients in the United States contracted the virus. Although it was commonly known that Hepatitis B can be contracted through sexual contact, intravenous drug use and contact with Hepatitis B patients, Han said researchers only recently discovered that mothers can pass the virus to their children, which is the common form of infection among APAs. Other infection sources include acupuncture, blood transfusions (prior to 1992) and on rare occasions the sharing of toothbrushes or nail files.
Han said most people with Hepatitis B exhibit no symptoms, but if untreated, the virus causes cirrhosis of the liver, liver failure and eventually liver cancer.
In Asians who acquire Hepatitis B as a child, Han said the risk of developing liver cancer increases when they are in their 30s and 40s. But because there are aggressive treatments now available, Han urged those who suspect they may be infected to get tested.
Dr. Mona Roy, a fellow in endocrinology at the Keck School of Medicine, noted that 90-95 percent of Asians, who develop diabetes, have the Type II diabetes, which is brought on mainly due to obesity, diet and a sedentary lifestyle.
Obesity is usually determined by the body mass index (BMI), but Roy said the World Health Organization is considering lowering the BMI numbers for Asians as a result of recent studies.
Pan also touched upon the BMI changes being considered by the WHO. Pan said for whites a BMI of 25 is considered normal. However, new research done with people in mainland China found that those who had a BMI of 23 exhibited a sharp increase in hypertension. The WHO is now considering lowering the BMI for Asians to between 18.5 and 22.9, said Pan.
Needed Advocacy and Political Threats to Better Healthcare
As researchers shared the importance of disaggregating data, they also emphasized the need to advocate for better health care policies for APAs.
Of most concern was the impact the Racial Privacy Initiative may have if passed. The initiative, being pushed by Ward Connerly, will appear on the March 2004 ballot in California, and would prohibit California from collecting data on race or ethnicity, except in specific areas.
“This will eliminate race or ethnicity from any data being gathered, especially around health care” said Foo. “If this happens, we’ll never know which populations are in most need and which populations have higher rates of certain diseases.”
Kazue Shibata, founder and executive director of the Asian Pacific American Health Care Venture, concurred that it was important to oppose the Racial Privacy Initiative next year. If the initiative passes, all the efforts of the last 10 to 15 years may be lost, she said.
Shibata noted that the current political climate was “very, very tough,” given the huge deficit plaguing the federal and California state budget. Many public health programs are being reduced or eliminated all together, said Shibata.
Shibata was particularly concerned over the reduction or elimination of what some consider non-essential services such as bilingual translation.
“These services serve as gateway services to other medical health services for our community,” said Shibata. “For example, bilingual outreach to our community about the harmful effects of tobacco increases access to physical check ups and cancer screening. People also begin to understand what is available in the community. The reduction in services or elimination will definitely have a ripple effect.”
To ensure that low income APAs are not adversely affected, Shibata urged everyone to “keep raising the importance of ensuring access to health care for all people in the state.”
Dr. Paul Ong, professor at UCLA’s School of Urban Planning and Social Welfare and director of the Lewis Center for Regional Policy Studies, said APAs needed to be counted and needed to be heard.
“We want better data not for data sake,” said Ong, ” but ultimately for improving health and the quality of life.”
As a researcher, Kagawa-Singer said all too often she comes across medical articles that cite the APA category with data “not available” or “not collected” or “not analyzed.” One time a colleague suggested to her that she use data collected from the “other” category since 96 percent of the respondents were APAs. But part of the difficulties in gathering data, Kagawa-Singer said was the language barrier since 55 percent of APAs speak English only a little and there are more than 100 different APA languages.
Dr. David Takeuchi, associate dean of research in the School of Social Welfare at the University of Washington, addressed the tension existing between scientists and those who push for social justice. He noted that some scientists did not want to have their research be perceived as biased towards any racial group.
“This tension has created many obstacles in making improvements, especially around health issues,” said Takeuchi. “We need a third space, a space where people can do good science and still have the outcome of improving life for people in the different communities.”