Blog: National Partnership for Action
Posted on 12/18/2013 by Kiran Ahuja
Over the last four years at the White House Initiative on Asian Americans and Pacific Islanders (WHIAAPI), we have been working with federal agencies across the board to improve data collection, analysis, and dissemination of findings and reports on Asian Americans and Native Hawaiians and Pacific Islanders (NHPIs). We have been particularly focused on NHPIs, who, according to the 2010 U.S. Census, comprise just 0.4 percent of the total U.S. population, making it difficult to include them in sufficient numbers in most national population-based health surveys. The lack of reliable health data for this population has made it difficult to assess their health status and health care utilization. However, the available data for this population indicates that Native Hawaiians and Pacific Islanders experience significant health disparities when compared to other groups, such as lower utilization of health care services and higher rates of chronic diseases, such as diabetes and obesity.
That's why we welcome the announcement made today that the U.S. Department of Health and Human Services (HHS) will launch the first-ever, large-scale national health survey to collect detailed health information on NHPI households – the Native Hawaiian/Pacific Islander National Health Interview Survey. This information will be collected through HHS' National Health Interview Survey, the nation's largest in-person, household health survey. Never before has there been a study of this scale to assess the health needs of NHPIs, and this type of survey has long been called for by the NHPI community. This important effort will help improve our understanding of the health concerns – from access to health care to health insurance coverage to rates of chronic diseases like diabetes or heart disease – faced by this community and to identify areas of opportunity for federal government to better address these concerns.
WHIAAPI encourages advocates and organizations across the country to join us in spreading the word about this landmark survey. We hope you can continue the conversation with us on Twitter using #NHPI.
Our hope is that the results of this study will provide researchers, policymakers, and community leaders with the data they need to understand and address disparities in health and health care, and provide lessons for data collection and analysis focused on small populations.
The Native Hawaiian/Pacific Islander National Health Interview Survey will begin early next year, and the results will become available summer 2015.
Posted in: Health Minority Populations HHS Health Disparities Federal Asian American Data & Statistics Health Care Health Equity Minority Health Native Hawaiian Pacific Islander Research & Evaluation | Comments | Add a Comment | Comment Policy | Permalink
Posted on 9/27/2013 by Coleen A. Boyle, PhD, MSHyg, and J. Nadine Gracia, MD, MSCE.
A generation ago, almost 15 percent of children in the United States born with sickle cell disease died before the age of two. Many more died in their teens. 1
Today, babies born with sickle cell disease face a far more promising future. Children and adults can benefit from treatment options that help mediate complications of the disease. According to data from CDC's National Vital Statistics System, the proportion of deaths from sickle cell disease among children decreased from 12 percent in 1979 to approximately 3 percent in 2006. Since the signing of the National Sickle Cell Anemia Control Act 41 years ago, considerable progress has been made in biomedical research, disease surveillance, and care coordination.
But as patients and families know all too well, barriers to care and quality treatment persist. Between 90,000 and 100,000 people in the U.S. currently live with sickle cell disease, making it the most common inherited blood disorder in the country. Minorities bear a disproportionate burden, with the disease occurring in roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births. And far too many have struggled to access the quality care that they need to manage the disease and live a healthy life.
That began to change three years ago, with the passage of the Affordable Care Act.
By directly addressing barriers to care and coverage, the Affordable Care Act has created new opportunities for those living with sickle disease to access affordable, high-quality health insurance and medical services – opportunities that many may never have had before.
Because of the law, sickle cell disease and other pre-existing conditions can no longer be grounds for denial of coverage from health insurers – a provision of the law that would provide security to 129 million Americans with pre-existing conditions.
Young adults living with sickle cell disease can now stay on their parents' health insurance until the age of 26, ensuring smoother transitions from pediatric care to adult care.
In addition, screening for sickle cell disease among newborns is now one of the preventive services covered at no cost under the Affordable Care Act. Thanks to the law, approximately 71 million Americans can now access these screenings and other important preventive services without having to pay a co-pay or deductible.
The law is also helping community health teams to explore new opportunities for improved disease management through the Centers for Medicare & Medicaid Services' (CMS) Innovation Center – and expanding access to care through investments in community health centers, where nearly two-thirds of patients served are people of color.
Meanwhile, agencies across the Department of Health and Human Services are working to make the most of these opportunities. At the Centers for Disease Control and Prevention (CDC), researchers are studying how sickle cell disease is managed at the community level through a state-based project called PHRESH (Public Health Research Epidemiology and Surveillance of Hemoglobinopathies). Using data collected from the program, CDC is helping states build capacity to monitor health system changes stemming from the Affordable Care Act – giving them the tools they need to identify the most effective interventions, highlight quality measures, and zero in on the "hotspots" of chronic conditions where they are needed most.
At the Office of Minority Health, one of the office's strategic priorities – leading the implementation of the first-ever HHS Action Plan to Reduce Racial and Ethnic Health Disparities – includes strengthening the cultural and linguistic competency of the health and health care workforce to improve health care quality and reduce health disparities. And as implementation of the Affordable Care Act continues, the Office of Minority Health's outreach and education efforts in minority communities are helping to reach those living with sickle cell disease and others who stand to benefit most from the health care law.
Three years after its passage, the Affordable Care Act has touched the lives of millions of Americans – including the thousands living with sickle cell disease. And this is just the beginning. On October 1, millions of Americans will have a chance to enroll in affordable health insurance coverage through the new Health Insurance Marketplace, with coverage beginning as early as January 1, 2014. While the fight against sickle cell disease continues, the health care law is giving patients and families affected by sickle disease unprecedented opportunities for improved care and expanded coverage – and new hope for a healthier future.
Learn more about the Affordable Care Act and the Health Insurance Marketplace at www.healthcare.gov.
Posted in: Health Minority Populations OMH Promising Practices HHS Health Disparities Partnership Federal Prevention Affordable Care Act/Health Care Law African American Asian American Health Care Health Equity Hispanic/Latino Promotores/Community Health Workers Research & Evaluation Youth | Comments | Add a Comment | Comment Policy | Permalink
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