Every decade, the United States Department of Health and Human Services (HHS) creates a document called Healthy People
(HP) that defines the agenda and priorities for all aspects of its work. This document establishes the justification for program funding, including health care services implemented by the Health Resources and Services Administration (HRSA), which oversees the Ryan White CARE Act funds. Priorities emerge from the document for research, like basic medical sciences research performed at the National Institutes of Health (NIH). HP shapes the HHS regulatory efforts such as those performed by the Food and Drug Administration (FDA), which approves new medications and medical devices. The document also guides the agencies that conduct enforcement of health laws including the reporting of infectious diseases by the Centers for Disease Control and Prevention (CDC).
Debuted in January of this year, the most recent HP document, Healthy People 2010, will be published in a final format in the next couple months. Two overarching goals guided the process during the planning period, 1) to increase the quality and years of healthy life and 2) to eliminate health disparities. According to the Secretary of Health, Donna Shalala, Ph.D., these goals are to be achieved within the vision of "Healthy People in Healthy Communities." This vision recognizes that health behaviors start at home and are inseparable from how citizens interact and participate in society.
The central importance of HP to the entire Federal health system cannot be overemphasized since it unites an enormous, diverse, and geographically separated group of Federal health institutions. All aspects of their work draw on HP for funding justification. Health advocates must know this process in order to be effective in making positive changes for their constituents. This article focuses on how HIV is addressed in Healthy People 2010, in both specific and related goals and objectives, and explains how to become involved in and capitalize on resources of the HP process.
According to HP 2010
's introduction, individual behaviors and environmental factors are responsible for about 70 percent of all premature deaths in the United States. Developing and implementing policies and preventive interventions that effectively address these determinants of health can reduce the burden of illness, enhance quality of life, and increase longevity. The theory that underlies HP 2010
, now several hundred pages long and containing over 460 objectives, is that its goals and objectives can be monitored using scientifically valid indicators of health. Changes in the indicators would provide the evidence for whether or not objectives are being met, and funding priorities of the different offices of HHS would stem from how well HP goals are met. For example, if one goal were to reduce the number of heart attacks in middle-aged Americans, the government would need to measure the number of heart attacks in middle-aged Americans over time to determine whether they are increasing or decreasing. If they were increasing, changes in funding priorities could include new programs aimed at increasing exercise or successfully treating high cholesterol and diabetes. There could also be more basic science research into why heart attacks happen, funds to teach improved prevention to health care providers, and a move to decrease the time a heart medicine takes to get approval by the FDA. If heart attacks were decreasing, priorities could be shifted to other diseases where the HP goals were not being met.
The second overall goal for HP 2010, to eliminate health disparities, acknowledges that different diseases affect different people differently. Otherwise, we would not have health disparities in this country. Many diseases, such as some cancers, are over-represented in particular US populations. The HIV epidemic is a dramatic example of health disparities. Communities of color, especially African-Americans, are over-represented in the epidemic. The leading cause of death for black men aged 25-44 in the US is AIDS. However, not all ethnic minority groups have higher incidence. Asian-Americans have the lowest rate of infection of all measured ethnic groups in the United States. There are other groups of Americans at increased risk for contracting HIV. Gay men, bisexual men, non-gay or bi-identified men who have sex with men, and intravenous drug users are also at greater risk. The interactions between demographics and behavior are as important as the individual determinants themselves in properly addressing the epidemic. Prevention and care programs directed at black, gay men would almost certainly not work with white, heterosexual IV drug users.
Instructive to how well the US is taking care of its HIV-infected citizens is the progress toward the goals set out in HP 2000
. Data to assess progress was available for 13 of the 17 Healthy People 2000
objectives. The objectives to lower the risk of transfusion-transmitted HIV infection and to protect workers from exposure to bloodborne infections exceeded goals. Progress was made toward targets, but targets were not reached, for objectives to slow the rise in the rate of new AIDS cases, contain the rate of HIV infection, and increase the proportion of sexually active females whose partners used condoms at last sexual intercourse. Objectives to increase the proportion of HIV-positive people who know their serostatus moved away from its target as did objectives for counseling, outreach, and school-based AIDS education. Thus, while the US succeeded in meeting objectives to protect health care workers and those who could have contracted HIV from transfusions, objectives were not met that affected the vast majority of Americans at risk for HIV and AIDS. The retreat from several important goals shows how the health of HIV-infected Americans can take a back seat even in a decade with an Administration seemingly more receptive to addressing HIV than its predecessors.
HP 2010 dedicates a section of 17 objectives to HIV, with the overall goal being to prevent HIV infection and its related illness and death. The objectives fall into several categories. With respect to prevention, the objectives include increasing condom use and providing increased access to HIV/AIDS counseling services in several high risk groups: substance users, prisoners, and those infected with TB. The objectives also call for increased STD and Hep B screening provided with HIV testing and for a reduction in perinatally acquired HIV infection.
With respect to treatment, the objectives call for reductions in the number of AIDS cases, increases in treatment and prophylaxis, and increases in proportion of HIV-infected people who know their status. The document also calls for the move from AIDS reporting on a national basis to HIV reporting. The CDC has already mandated that States enact HIV-reporting to maintain Federal funds for HIV programs. Some states, like New York, recently enacted named reporting while others have opted for confidential coding systems.
Other Objectives Important to HIV-Positive People
Leading health indicators were chosen for HP 2010
because they affect all Americans. Thus, the majority of the goals and objectives in the document are important for the health of Americans. Certainly the sections on tobacco use, exercise, nutrition, and even public health infrastructure can affect the lives of all Americans, including those who are HIV-positive. However, there are specific areas where HIV-positive individuals may be especially impacted.
Immunization and Infectious Diseases: Prevent disease, disability, and death from infectious diseases, including vaccine-preventable diseases. HIV-infected people should receive appropriate immunizations once diagnosed. Some infectious diseases, such as tuberculosis and hepatitis, are often associated with HIV, and screening, prevention, and treatment may be necessary. Other issues such as emerging drug resistance are also of importance to HIV-infected people since they may take several antibiotics in the course of their care.
Mental Health and Mental Disorders: Improve mental health and ensure access to appropriate, quality mental health services. More and more research is demonstrating how mental illness can affect the course of HIV disease, such as its effects on medication adherence and how it may affect the likelihood that people will engage in high-risk behaviors that could transmit the disease. Mental illness should be identified and treated.
Sexually Transmitted Diseases: Promote responsible sexual behaviors, strengthen community capacity, and increase access to quality services to prevent sexually transmitted diseases (STDs) and their complications. The majority of HIV-infections are transmitted sexually, and there are several STDs that can increase the likelihood of HIV transmission. STDs can also affect the course of HIV disease with some evidence that these infections can speed the rate of the disease.
Substance Abuse: Reduce substance abuse to protect the health, safety, and quality of life for all, especially children. Because injection drug use and needle sharing with HIV-infected partners can spread HIV, this is a critical area for addressing HIV. Intravenous drug users need to be able to seek care for substance abuse to reduce their risk of contracting HIV. The effects of other illicit drugs besides injectable substances can also increase high-risk sexual behaviors both because of the drugs' influences and because sex may be exchanged for drugs or money for drugs.
Affecting the HP Process
There are two steps in advocating for improved funding for health. Congress determines overall priorities and funding amounts. However, it is up to HHS to spend it! While the Departments and Offices receive their funding according to Congressional mandates, they distribute the money according to their own internal processes and politics. The Healthy People process is how the HHS has decided to prioritize its spending. Thus after advocating at the Congressional level, advocacy needs to continue within the Departments and Offices.
There is a catch-22 involved in the introduction of new priorities to the Healthy People document. Because the indicators, priorities, goals, and objectives are grounded in existing scientific evidence, poorly researched and understood health areas may not be considered for inclusion in the document. For example, the author of this article helped to spearhead an effort to better address health issues pertaining to gay, lesbian, bisexual, and transgendered (GLBT) Americans. Many Federal officials argued that there was little evidence that there were health disparities in these populations. However, while few if any Federal funds have ever been spent on research into GLBT health issues, there was a large and growing body of scientific health literature that had examined several domains of health in GLBT populations. Key to our success was making the Federal government aware of existing scientific evidence. However, for areas less researched, this can be an uphill battle. The creation of the Healthy People document is a political process as well. Even if there were compelling evidence that substance abuse rates were higher for lesbians than straight women, translating this into Federal dollars for programs aimed at substance abuse prevention and treatment for lesbians could be politically impossible.
While a final HP 2010
document is due out by the end of the year, the planning process had a new openness that included several public comment periods across the country and the ability to make comments on the document through the Internet. Now citizens need to advocate for the continued implementation of the goals and objectives contained in the document. Just having the objectives present does not mean progress will be made toward them! In order to address some of the gaps in the HP process, HRSA is funding the creation of companion documents to HP 2010
. They are to focus on the how different communities can implement salient HP 2010
objectives. There is wide latitude for these documents, including what objectives are addressed and the audience for the document. A companion document that focuses on HIV-positive people would likely discuss the treatment and counseling objectives from the HIV-section as well the other critical areas of health that can affect their care and treatment and how these objectives can be realized within the community and the resources required.
Healthy People maintains a Consortium of national membership organizations whose missions include improving the health and well being for all. The members come from a full spectrum of life representing older adults, racial and ethnic coalitions, educators, businesses, providers, scientists, and many others. The members are also broadly based in terms of the range of activities to support achievement of the national health objectives.
There are several hints that HIV communities can take when advocating for improved health care at the Federal level. Be aware that everyone with whom you interact has several allegiances. In the competitive world of Federal government, everyone has personal and political agendas, trying to get ahead or stay on top.
- Capitalize on all of your resources. Critical to success is to involve healthcare providers, healthcare researchers, and public health officials who know the issues related to HIV. The HP process is rooted in science and having advocates who understand the issues from a scientific perspective is essential to working with government officials, who themselves are often scientists and care providers. Community involvement is also critical. Established organizations that have advocated for HIV-positive people and HIV-positive people themselves need to make their concerns known, make their stories real, and teach the government how it needs to help.
- You must advocate in Washington, D.C. for Federal money since Washington and the Federal government are inseparable. Washington bureaucrats lead sheltered lives, and they depend on consumer groups coming to them to tell their stories. The mountain is not coming to you so you must go to the mountain.
- Seek out specified liaisons to your community. Many times if there are identifiable communities with specific concerns, an Administration will appoint liaisons to interact with these communities. However, never limit yourself to these individuals, who can simply be tokens with little power.
- Understand the differences between appointees and employees. Appointees change with the Administration and are swayed by political winds. Federal employees, on the other hand, may not be able to make sweeping decisions but can continue to work with you through hostile Administrations or Congresses. However, they are trying to impress their bosses and do not want to cross boundaries beyond their power.
- Be present at as many events as possible since just being there is more than half of the battle. You learn about new opportunities even as you are seeking out other ones. Follow up on all leads as well. Remind officials of the commitments they have made and be ready to work around their schedules so that you can meet with them.
- Finally, seek out Congressional support since Congress-people who supported you during funding appropriation may stand by you as you advocate within the government to direct that funding.
Resources for Participating in the HP Process
The HHS maintains a one-stop web page for all information related to the HP process. The site contains the full HP 2010
document in a highly searchable format at http://www.health.gov/healthypeople
. The government has also produced a CD-ROM containing the document. This compact way of accessing the document is especially useful given the fact that the printed document is in two volumes, about 10 inches tall together, and weighs about 10 pounds!
The Internet site also contains information on several community-based initiatives that have grown up from the HP process. This information is useful in discussing how to bring communities together to address HIV. The site also includes information about the Consortium, upcoming meetings, and agendas. You can also call to get more information at 1-800-336-4797.
The HP process, now 20 years old, is becoming the main justification for all priorities of Federal health funding. The new emphasis on capitalizing on community to eliminate health disparities rings true for HIV-positive communities. Understanding the HP process is critical for health advocates and citizens alike.
Darren Carter, M.D., a research scientist at the HIV Center for Clinical and Behavioral Studies, is the policy chair of the Gay and Lesbian Medical Association.