Healthy People 2020 Program Includes Thalassemia Objectives
June 13, 2011 – For 30 years, the U.S. Department of Health and Human Services (HHS)’ “Healthy People” programs have been working to improve the quality of our nation’s health. The latest installment in the initiative, Healthy People 2020 is the result of a multi-year process that reflects input from a diverse group of individuals and organizations, including the Cooley’s Anemia Foundation. It is of special interest to the thalassemia community because a new section on Blood Disorders and Blood Safety has been added.
The Healthy People program is a set of science-based ten year national objectives for improving the health of Americans; the “2020” refers to a goal of achieving these designated objectives by the year 2020. Healthy People has three goals: to encourage collaborations across all sections and all topics included in Healthy People 2020; to guide individuals toward making informed health decisions; and to measure the impact of prevention activities.
The Blood Disorders and Blood Safety section includes the general category of hemoglobinopathies, which includes thalassemia as well as sickle cell.
Objectives in the Blood Disorders section which are of special interest to the thalassemia community include:
| Healthy People 2020 Health Measures | |
| Healthy People 2020 has four foundation health measures, which are used as indicators of progress. These measures are: general health status, health related quality of life and well-being, determinants of health, and disparities (ethnicity, gender, sex, etc). The general health status for Healthy People 2020 is determined using measurable data within the program. Indicators include life expectancy, healthy life expectancy, years of potential life lost, physically and mentally unhealthy days, self-assessed health status, limitation of activity, and chronic disease prevalence. Health related quality of life focuses on the impact health status has on quality of life; tools used to determine this include PROMIS (Patient Reported Outcomes Measurement Information System), well-being measures and participation measures. (Participation measures look at how health affects social participation, e.g., employment, education, leisure, etc.) Determinants of health refers to a range of factors that influence health status, such as policy making, social factors, health services, individual behavior, and biology and genetics. Disparities measure differences which can be found across ethnicities, gender, socioeconomic status, geographic location and other categories. |
1. To increase the proportion of hemoglobinopathy carriers who know their carrier status.
2. To increase the number of community based organizations that provide outreach and awareness campaigns for hemoglobinopathies.
3. To increase the proportion of persons with hemoglobinopathies who receive disorder modifying therapies.
4. To increase the proportion of persons with a diagnosis of hemoglobinopathies who receive early and continuous screening for complications.
5. To increase the proportion of persons with a diagnosis of hemoglobinopathies and their families who are referred for evaluation and treatment.
6. To increase the number of persons with hemoglobinopathies who receive recommended vaccinations.
7. To increase the number of persons with hemoglobinopathies who receive care in a patient/family