Blog: National Partnership for Action
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 | Comments (1) | Add a Comment | Comment Policy | Permalink
Posted on 9/11/2013 by Pamela Ascon
You are in a foreign country and your child is feeling sick. You rush her to the hospital and want to quickly speak to a doctor. Instead, you are given a long form asking many questions in a complete different language. You ask for help, but no one seems to comprehend your heavy accent.
This is the reality that my family and I encountered when visiting medical facilities for many years. As a child who had recently arrived to America, I attempted to act as a translator between the doctor and my mother with the few vocabulary words that I had learned so far in school. I remember my mother’s face emanating discomfort with her inability to fully express her feelings and concerns.
I now understand that the helpless look on my mother’s face was a true reflection of the challenges consistently encountered by many minority populations.
Some of the most significant barriers between healthcare providers and patients are language and cultural differences, which can play a crucial role in patient health outcome. If patients have a hard time communicating with their healthcare provider, this can lead to errors in diagnosis or treatment. With the ample range of cultures in the United States, patients’ cultural beliefs are of equal importance. If a patient’s belief interferes with their treatment option, the clinician should respectfully accommodate the patient while ensuring that they have a successful health outcome.
In 2050, it is estimated that the minority population will account for almost half of the U.S population [PDF | 283KB], underscoring the necessity of culturally and linguistically appropriate approaches. To inform these approaches, the U.S Department of Health and Human Services has recently released the Enhanced National Standards for Culturally and Linguistically Appropriate Services in health and health care, also known as the CLAS Standards. This blueprint guides implementation to advance and sustain culturally and linguistically appropriate health services. It also highlights the importance of providing quality and equal health services to minorities.
Currently, CLAS Standards are being utilized to improve operational functions within the workplace by equipping culturally and linguistically competent staff to serve the needs of the populations that they serve. CLAS Standards improve quality of care and patient safety while decreasing the liability risk for health care providers. They will ultimately prepare health and healthcare organizations to meet the needs of minorities while improving health care quality.
Therefore, I encourage health and health care organizations to adopt and implement CLAS Standards. Working as a team, we can narrow the cultural and language gaps within the health care system and eliminate a major barrier to achieving health equity in the nation.
Posted in: Health Minority Populations Promising Practices Health Disparities Federal CLAS Cultural & Linguistic Competency Health Care Minority Health | Comments | Add a Comment | Comment Policy | Permalink
Smartphone and mobile apps: An important solution to increasing participation and engagement of minority and underserved communities
Posted on 8/22/2013 by Regina Greer- Smith, MPH FACHE
These are exciting times. Today, technology allows us to advance knowledge and empower members of underserved communities with information at rapid speed and with minimal cost. Considering the use of smartphone and mobile apps may be an important solution to increasing participation and engagement of minority and underserved communities in patient-centered outcomes research and comparative effectiveness research. Patient-centered outcomes research involves research that brings both the patient and providers together for shared decision-making for better outcomes and determining the costs and benefits of one course of treatment over another.
According to the Pew Internet and American Life Project , minorities (along with young adults) are leading consumers of health information via mobile platforms. African Americans and Latinos are more likely to own a mobile phone than whites and outpace whites in mobile app use. African Americans are using Twitter to share information, especially about neighborhood events. This information should be leveraged by researchers to use mobile apps and smartphone technology in research engagement with minorities and underserved communities.
Taking the concept a step further, creating apps that deliver education and information from trusted members of communities – such as ministers, physicians and researchers – could increase wider participation because of the trust and relationships that are already in place.
As an example, an innovative research project to engage African American women in research is now underway. Women stay connected using a smartphone app to learn about breast cancer, receive messages about the importance of participation in clinical trials and connect with researchers who they select to work with.
Developing mobile apps to include education and resources about the benefits of participating in patient-centered outcomes research and topics of interest to minority populations could increase their participation and involvement. Consider the possibilities for raising awareness and advancing health equity in research through mobile apps:
Developers and researchers must be aware that patients, caregivers and other community stakeholders are key partners in the development of mobile apps, because mobile apps are being developed for their use to enable and increase their participation – and not solely for the use of the researcher as a recruitment vehicle.
In January, 2013, Regina Greer-Smith, along with a team of healthcare professionals, formed The Midwest /Partners Patient Engagement Cluster , (MPPEC) resulting from involvement with The Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization created from the Patient Protection and Affordable Care Act in October 2012. MPPEC’s mission is to engage patients and researchers in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).
Posted in: Health Minority Populations NPA Partners Promising Practices Health Disparities Prevention African American Health Care Health Equity Hispanic/Latino Minority Health Research & Evaluation | Comments (1) | Add a Comment | Comment Policy | Permalink
Posted on 8/21/2013 by Robin Whittemore
Minority adults are at a disproportionate risk for developing type 2 diabetes, a challenging illness to manage that is a leading cause of morbidity and mortality in the U.S. Evidence indicates that lifestyle change programs, which incorporate healthy eating, physical activity and modest weight loss, can prevent or delay the development of type 2 diabetes. Yet, access to diabetes prevention programs is limited, particularly among minority and low-income adults.
To help address the issues with access to diabetes prevention programs, we designed a study to link existing community resources—public housing communities and a homecare agency— to minority and low-income adults at-risk for type 2 diabetes. Public housing communities provide housing at reduced rental costs for families of low socioeconomic status. We chose this setting because these communities often have the space and personnel to support a community-based program. The homecare agency consists of nurses who monitor and implement healthcare in a home environment, and are trusted health professionals in public housing communities.
We worked collaboratively with homecare nurses and residents of public housing to modify a diabetes prevention program to meet the needs of the community (e.g., low health literacy, family focused, culturally relevant, limited resources). We then evaluated the effect of a six-month diabetes prevention program provided by homecare nurses compared to a one-month enhanced standard care condition. Community health workers assisted nurses in the delivery of the programs.
The 67 participants were primarily female (79%), racial and ethnic minorities (76% non-white), had a high school education (72%), were unemployed (73%), unpartnered (83%), with an average age of 40 years, and an average of three children. Approximately half of the sample had elevated depressive symptoms (51%). Thus, our program reached adults with multiple health risks.
Homecare nurses were able to implement the program as intended; however, attendance at classes was sub-optimal, particularly with the six-month program. We did not see any difference between groups on any health outcomes, possibly because both groups received a similar program. What was promising was that there were significant improvements in health behaviors in both groups. Participants increased fruit and vegetable intake, low-fat eating, meal planning and improved nutrition behavior and physical activity. Participants decreased sugar drink intake, unhealthy snacking and triglycerides. They also reported improved stress management and decreased depressive symptoms. We did not see significant changes in BMI, glucose, cholesterol or blood pressure.
These findings suggest that brief diabetes prevention programs can dramatically improve the health behaviors of a high-risk, vulnerable population. Collaborating with a homecare agency and key stakeholders, and providing the program by homecare nurses was highly acceptable to nurses and participants, and offers a feasible and potentially sustainable way to improve access to diabetes prevention programs. Future dissemination and evaluation of health promotion programs for residents of public housing communities are urgently needed.
This study was funded by the Robert Wood Johnson Foundation .
Posted in: Health Minority Populations NPA Partners Promising Practices Health Disparities Prevention Diabetes Health Care Health Equity Minority Health | Comments (2) | Add a Comment | Comment Policy | Permalink
Posted on 8/2/2013 by Joy Liu
We would all like to believe that where you are born does not determine or sentence your fate, but that’s only partially true. Birthplace can limit the care a newborn receives, the quality of nearby education or access to healthy food choices. Increasingly, researchers are also finding evidence of biological connections between early life experiences (including those inside the mother’s womb) and long-term health.
Last year, as I spent time conducting a research study on neonatal mortality in rural India and observing procedures at a tertiary-care hospital in the U.S., it became clear to me that the circumstances of one’s birth determines so much of what happens afterwards. As I walked through the neonatal intensive care unit listening to the beeping and hissing of machines that kept children who could fit into my palm alive, I was singularly aware of the great separation that exists after the moment of birth.
I was struck that the health of those babies is related to both the nutrition and stress levels of their mother while in the womb and access to health care once they are born. Many of the neonatal deaths I documented in rural India were attributable to factors linked to the types of stressors that preconception care tries to address.
This summer, during my internship with the Office of Minority Health Resource Center, I’ve written and edited resources for the Peer Preconception Educators program (PPE). The program seeks to train college students as peer educators on topics related to preconception health.
Preconception health care helps women and men take steps during their reproductive years to protect the health of a baby they might have in the future. Critically, it fills the gap between conception and access to prenatal care. Nearly one-fifth of pregnant women who give birth in the U.S. don’t receive prenatal care before the end of the first trimester, a figure that jumps to over a quarter for minority groups such as African Americans, Latinas and American Indians. Yet by that time, most of the developing fetus’ major organs have already formed. It also misses a critical window between four and 10 weeks of pregnancy when the fetus is most sensitive to maternal conditions and environmental exposures.
For many mothers, prenatal care begins too late to take essential steps in order to ensure the best possible birth outcome for their children. This problem is compounded by difficulties in accessing preconception care, particularly for non-pregnant, low-income women who don’t qualify for Medicaid.
The Affordable Care Act (ACA) has recently offered new opportunities for preconception care. In addition to requirements that health insurance plans must cover women’s preventative services, at least one well-woman preventive health visit is covered annually, which includes preconception care. Other highlighted services include screening for gestational diabetes, testing and counseling for HIV, and screening and counseling for domestic violence. All are key components of the PPE curriculum and critical services for women’s health.
If we truly want to talk about ending health disparities, reducing infant mortality rates or giving every child in this country the same opportunity to be all that they can be, we need to actively promote preconception care. After all, why should circumstances before and during birth determine a person’s future?
Posted in: Health Minority Populations OMH HHS Health Disparities Federal Affordable Care Act/Health Care Law African American American Indian & Alaska Native Health Care Health Equity Hispanic/Latino Infant Mortality Minority Health Preconception Health Preconception Peer Educators Women's Health | Comments | Add a Comment | Comment Policy | Permalink
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