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EXECUTIVE SUMMARY:Changes in the HIV/AIDS epidemic over the last couple of years has raised some concerns regarding the effectiveness of the current AIDS surveillance efforts. Currently, only persons that test positive with AIDS are reported systematically to public health officials. Because of the new treatment options, the time between infection of HIV and the progression to an AIDS diagnosis is increased. Public health officials are concerned that the surveillance of AIDS is not indicative of both the number and the demographics of the HIV-infected population.This has led many medical, public health officials, AIDS organizations and leaders that previously opposed making HIV a reportable condition, are reassessing their position and considering support for some kind of HIV reporting system. There are currently two methods under serious debate.Some public health officials are proposing a confidential, name reporting, HIV surveillance system. Proponents of this method argue that it is time to end the “AIDS exceptionalism” and use the traditional reporting system that is used on other infectious diseases. This would involve doctors, hospitals, and laboratories reporting to state health officials the names of all individuals testing positive with the HIV virus. Other health officials are proposing the use of an anonymous, unique identifier system. This method usually includes a portion of an individuals social security number, date of birth, and codes for race, gender and risk factor. The doctors, laboratories, and hospitals would report this information to public health officials when an individual tested positive with the HIV virus.That we need more accurate and timely data regarding current trends in the incidence of HIV, is indisputable. Getting accurate HIV statistics depends on the willingness of individuals to get tested. Timely data depends on the individuals seeking testing without postponement. Several studies indicate that approximately 60 percent of individuals would avoid HIV testing that is not anonymous. Other studies have indicated that testing associated with names reporting decreases the likelihood of an individual to retrieve their results by approximately 15 to 25 percent more than is likely with anonymous testing. The major concern is the discrimination and stigma individuals still feel is attached to HIV/AIDS.The primary goals of any HIV surveillance system should be; to accurately track incidence of HIV disease to better plan for future service needs; target and evaluate HIV prevention efforts; to assess the demographics and risk profiles affected by the epidemic to make possible informed, rational resource allocation decisions. There are risks associated with those goals that include; inadvertent or malicious disclosure of names of those infected, including occurring as a result of legislative mandate; discrimination in employment, housing, insurance, education, etc; increased testing deterrence for fear of reasons listed above; and increased distrust of public health officials by those most at risk.We’ll need solid anti-discrimination protection and make possible the real availability of treatment for the poor and the uninsured in order to eliminate the fears that keep people away from testing. Any proposed system must balance the proposed benefits versus the risks, real or perceived, in order to be successful. PROBLEM STATEMENTThe HIV/AIDS epidemic is not over. Individuals who test positive are living longer with HIV due to the new antiretroviral therapies. We can not afford to enter a complacency stage regarding this disease. There has been a decrease in new AIDS cases, but there is not any accurate data regarding the increasing numbers of individuals infected with the HIV virus. It is critical that we develop a responsible and ethical approach for HIV surveillance. We need to track these cases in order to develop prevention programs, as well as to promote early treatment for these individuals.In the early stages of the AIDS epidemic, surveillance of AIDS cases, including reporting the names of persons diagnosed with AIDS to public health authorities, began almost immediately without much protest. This is primarily due to the fact that most individuals who were diagnosed with the virus were in the late stages of the virus. It is the knowledge of one’s HIV status that allows an individual to make decisions for treatment or prevention. The HIV test is a prevention tool in motivating those who test negative to change risky behavior. A positive HIV test is a tool used by individuals to initiate early treatment. The dramatic advances in treatment are giving some a chance to live longer and to improve the quality of life with early intervention. In order to continue an effective fight against this epidemic, the approach used to track the disease will need to change. Tracking trends of HIV infection is essential. In the 25 states that currently use some type of reporting system to integrate the new cases of HIV and AIDS, it is evident that unlike new AIDS cases, new cases of HIV are not on the decline. There are an increasing percentage of new cases within minority groups, lower economic groups and women. There are three interrelated issues that are evident within these groups reporting higher numbers of new HIV cases. The health disparities between the social classes, higher incidences of IV drug users, and higher rates of STD’s, are all factors that are prevalent within these groups.The method in, which will be most effective in tracking cases of HIV, is a very controversial issue with policy makers. There are several factors that need to be considered when developing public policy to best fight this epidemic. Factors that seem to contribute to deterrence of individuals from being tested include; being on a name-based disease database that could now or in the future be open to perusal by HMO’s; insurance companies; employers; law enforcement personnel; not having medical treatment to fight the virus accessible to them; and discrimination due to the stigma associated with people with HIV/AIDS. Name reporting methods, unique identifier systems, incidence studies, and prevalence studies are the primary methods being used to track HIV/AIDS. Policy makers must decide which method(s) would best provide accurate and timely information regarding current trends in HIV infection for the effective allocation of public resources. The current method of only tracking AIDS is no longer an effective method of providing an accurate picture of trends of HIV infection. The Problem is: Since the HIV/AIDS epidemic has changed, the tracking of only the persons with AIDS is no longer an effective method of providing an accurate picture of trends in infection. GOALS AND OBJECTIVESThe goal is to determine an effective method in which to track HIV cases. The HIV surveillance method chosen should be the one that collects data in a timely fashion to most accurately show the prevalence of the disease. The objectives for determining an effective method to track HIV, in order to best prevent the further spread of the disease include:1. Obtaining data that is accurate to determine risk profiles of the HIV/AIDS epidemic. 2. Tracking groups where HIV is prevalent, to effectively target prevention efforts.3. To link to health services for those individuals who test positive.4. To provide a policy where the individual seeking testing will not be deterred from being tested or from seeking treatment, due to the fear of discrimination.5. To collect timely data for effective resource allocation. ALTERNATIVESAlternative One: Mandatory Names ReportingUnder this alternative, all persons testing positive for HIV would have their names, where they live and the method in which they likely became infected reported to the Center for Disease Control, (CDC). Proponents that support this method of HIV surveillance argue that there is a conflict between the privacy rights of individuals who have or may have HIV and the public health needs of the country, and that individual civil liberties must take a back seat in order to effectively battle the spread of HIV and AIDS. It would be handled in the same manner in which TB, syphilis, and other communicable diseases are handled. It would be mandatory that doctors, labs and hospitals report each case of HIV, rather than waiting for the virus to progress to the stage of AIDS to local public health officials. There would be follow-up calls made to sexual partners and/or IV drug users that may be the source of infection or at risk of infection. There would also be routine tests done on the general public, and high risk groups, such as gay men, IV drug users, and persons that are known to have multiple sex partners. Propositions that are supported as a result of named-based surveillance include; to monitor the spread of HIV and collect more accurate epidemiological data; to aid in target prevention and public health efforts; it would permit individuals with HIV to link with appropriate health care services; aid in more efficient allocation of AIDS funding; and the concerns about discrimination against people with HIV and AIDS are much reduced as a result of supposedly strong legal protections of confidentiality and against discrimination. Alternative Two: Using a Unique Identifier SystemThis method of HIV surveillance would include a unique identifier that would protect the individuals’ identity, but it would include demographics, method of transmission, and age of the individual. It is likely that the method would be similar to the method that Massachusetts has implemented for the last year. The first two letters of an individuals name and the number of letters in the last name, the zip code of residence, and the last four numbers of their social security number would be recorded to identify the individual. Anonymous testing would be available at all HIV prevention centers. All persons coming in to a center for HIV testing would be identified by the coded identifiers that would insure privacy and confidentiality of the individual. Under this alternative, doctors and laboratories would forward the unique code for each patient to county health officials, who would pass the information to the state. The name would remain with the doctor or the lab and could not be passed on to public health authorities. There would not be a mandatory partner notification policy with this plan.EVALUATION CRITERIAThe evaluation criteria to be used to evaluate the different alternatives are:1. TECHNICAL FEASIBILITY –Will the policy work? + It can not deter at-risk groups from accessing testing facilities. + The policy should be able to provide data in a timely manner. + The policy chosen to track HIV should achieve at getting accurate data that is a true reflection of the prevalence within that population. + There should be protection against or minimize any advantage for dual reporting within the surveillance system. 1. ECONOMIC AND FINANCIAL CONSIDERATIONS–What are the costs to implement the policy? + The surveillance system should not be implemented by diverting funds from existing HIV or other public health programs. + Government funding is limited. The surveillance method that is chosen should also have supporters within the community that will solicit funding from private sources to implement and possibly subsidize the system until data can be forwarded to government agencies showing the need for funding. + When determining the cost to implement an HIV surveillance policy, it is necessary to also consider the benefits to an effective policy. + The grants and other funds available can be directed to the communities based on the prevalence within that community. 3. POLITICAL VIABILITY–What political opposition will this policy face? + The policy must be accepted by public health officials and patients. + The policy can not violate any personal rights of infected individuals regardless of the method of transmission. + High-risk groups must not be deterred by the policy. + The existing laws and regulations regarding confidentiality and nondiscrimination protection must be supported with heightened civil and criminal penalties for violations. + The policy should not be in violation of any local, state, or federal laws. 4. ADMINISTRATIVE OPERABILITY–What part of administration will be in charge of organizing the implementation of the policy? + The Center for Disease Control, the federal government, state government, and even the local government should have a part in implementing the policy within their respective jurisdictions. + Whether the jurisdictions appointed would have the resources, including manpower, educational programs regarding the rationale and procedures to maintain high levels of confidentiality. EVALUATING THE ALTERNATIVES Alternative One1. TECHNICAL FEASIBILITY-Alternative one would only satisfy one of the factors of technical feasibility. The data could be provided in a timely manner, if using the name-based system. There are 24 states that are using this system, and all of the states use this system to report AIDS. In most states, the data is transferred to the CDC within a 24-hour time span. This will not change, as in these states, this plan is already being practiced. According to several studies a significant proportion of high-risk individuals would not get tested, if they had to use their names in contrast to using the unique identifier. The method will not provide reasonably accurate data showing the prevalence of HIV within the population. Within this system, the motivation to use a false name, rather than to risk discovery of infection by other government agencies is high.2. ECONOMIC AND FINANCIAL CONSIDERATIONS-Alternative one satisfies all except one requirement of minimizing the costs associated with the implementation of mandatory name-based reporting. This method has many non-governmental supporters that have indicated that they would contribute to this system if needed. These communities would likely suffer inadequate funds due to the indicated prevalence would be significantly less than the actual. Federal funding is usually allocated based on number of positive cases.3. POLITICAL VIABILITY-Alternative one can satisfy all but two of the factors within the criteria of political viability. This method of surveillance is widely accepted by public health officials, and has had support within most communities in the form of financial and volunteer services. There is evidence within the states that are currently practicing this method of surveillance, that there has been a slight decrease in the response rate since enacting the name-based policy. There can be safeguards put within the policy to protect against the violation of the other criteria. Proponents of this method claim that the different treatment regarding HIV/AIDS and other sexually transmitted diseases, (STD’s) contributes to the stigma. Mandatory partner notification policies have deterred high-risk groups, including the female groups. Females have indicated in various surveys, that their fear of spousal abuse with mandatory partner notification or societal discrimination would force them to use a false name, or not be tested at all. Many people are not totally aware of their prejudicial behavior toward certain high-risk groups, but the mandatory classes will help to insure compliance of anti-discrimination issues. This alternative is not widely accepted by patients and it has been shown to deter individuals who fear name-based methods of surveillance.
4. ADMINISTRATIVE OPERABILITY-Alternative one can satisfy both evaluation criteria of administrative operability. Implementing the policy within the community, reporting all cases of HIV infected to state health officials, and the reporting to the CDC by the individual states, can be accomplished with minimal changes in administrative practices. The CDC could then request the needed funding based on new cases of HIV within each state. The administration would not be overwhelmed with excessive drains of implementing a completely new method of surveillance in most states. There would not be a change in the current method of reporting, only the inclusion of reporting HIV infected individuals, as well as the current practice of reporting individuals with AIDS. There would likely be resources available to public health officials through on-site education programs, training with the health department on the systems already in use, community support, etc.Alternative Two1. TECHNICAL FEASIBILITY-Alternative two would satisfy all of the factors within the technical feasibility criteria. Unique identifier systems would provide timely data to the CDC, and the data would likely be accurate regarding the number of individuals testing positive. This method would use codes that would consist of letters and numbers to identify the individuals being tested. This method would use codes indicating race, method of transmission, and demographic information to make the data as useful as any other surveillance method. Since individuals would not be threatened that their names would be discovered by other governmental officials, they will be less likely to feel a need to use a false name when reporting. Studies have consistently indicated that many individuals would only be tested at anonymous sites, such as the unique identifier system. This method will not deter those of high-risk groups for fear of discrimination.2. ECONOMIC AND FINANCIAL CONSIDERATIONS-Alternative two can satisfy all the factors within the economic and financial consideration criteria. There are many private agencies that are enthusiastic about supporting an HIV surveillance policy that is capable of obtaining accurate and timely data, and that protects the identity of its patients. Some pharmaceutical companies have already expressed their willingness to support this method of tracking HIV prevalence. The initial cost of new equipment to accommodate the use of unique identifier systems will be offset by the benefit of providing accurate and useful data. There are two computer-programming developers that have offered to donate the programs that will be needed for encryption capabilities to begin the implementation of this alternative. Both IBM and Compaq have offered donations of some computer needs to assist in implementing the unique identifier system. The CDC should allocate funds to assist a test cite in getting started using this system. The CDC has not assisted in making this alternative an option for surveillance. They have contributed considerably to the states that have opted for the name-based systems, and are required to devote an equal amount to a feasible alternative. The benefits to having an effective policy in tracking HIV will far outweigh the initial cost that will be encountered in the start-up of the policy. With individuals living longer, and enjoying a better quality of life, it is likely they will contribute positively to society. Early detection also lessons the burden on society by postponing or possibly eliminating the excessive hospital debt likely to accrue when the disease progresses to full-blown AIDS. 3. POLITICAL FEASIBILITY-Alternative two satisfies the evaluation criteria of political feasibility. Most public health officials are supportive of any method of surveillance used to track the HIV virus. This method of surveillance is supported almost exclusively over any other method by individuals who are HIV positive, or at-risk individuals. Public health officials and especially HIV positive and at risk individuals would be supportive in any capacity they were able in aiding the success of this method of surveillance. Proponents of unique identifier systems believe that this is the only method that will provide the individual with his right to privacy. Many political groups support this alternative when evaluating civil rights concerns. Anonymous testing sites and non-name-based sites are the only sites that will be used by a significant percentage of individuals of at-risk groups. This method provides the most protection from discrimination based on real or perceived health and/or genetic status concerns. All the personnel will be educated regarding the strictest policies on anti-discrimination, an individual’s privacy rights, etc. to assure that each patient isn’t threatened by the stigma associated with HIV/AIDS. This method of surveillance is in full compliance with all local, state, and federal laws.4. ADMINISTRATIVE OPERABILITY-Alternative two can satisfy the criteria in for administrative operability. The CDC would be responsible for investing their resources in each state that implements the unique identifier surveillance of HIV. Doctors and laboratories would report all cases of HIV to state health officials using the unique identifier method. The state officials would then report their data to the CDC for the proper appropriation of funds. After the initial implementation this system, funds could be allocated based on actual need and level of prevalence of HIV within their jurisdiction. To insure compliance with anti-discrimination regulations, the CDC would make classes to educate health care officials available to all jurisdictions.EVALUATING ALTERNATIVES ON MEETING THE GOALS & OBJECTIVESAlternative OneAlternative one is only able to meet the third objective completely and the fifth objective slightly out of the list of five objectives. #3 that objective states, “To link to health services for those individuals who test positive”. #1 This alternative could not meet the first objective regarding, the obtaining of accurate data to determine risk profiles of those individuals who are HIV/AIDS positive. A name-based mandatory reporting system is not likely to provide accurate data regarding prevalence of HIV. The deterrent effect of name reporting is most pronounced in the very populations with the greatest need for preventive intervention: gay and bisexual men, people of color, intravenous drug users and persons who buy or sell sexual acts.Throughout the AIDS epidemic, survey research has consistently shown that a significant minority of the U.S. public endorses coercive measures such as quarantining of HIV-infected persons, universal mandatory testing, laws making it a crime for people with HIV/AIDS to have sex, and mandatory identification cards for persons with AIDS, AIDS discrimination in employment, housing, school policies, and services has been widespread. Employers have refused to provide insurance coverage for employees with AIDS; property owners have refused to rent to persons with AIDS or have evicted them; parents with AIDS have been faced with legal battles concerning child custody and visitation rights; and persons with AIDS have experienced unwarranted demotions, dismissals, and harassment in the workplace. In addition, some individuals with HIV/AIDS have been the targets of violent attacks because of their HIV status. The fact that AIDS has occurred proportionately more in marginalized groups, such as gay men, injecting drug users and persons of lower economic classes has only led to more reason for discrimination. #2 It will not be possible to track HIV prevalence if the individuals are not being tested. The main objective is to track groups where HIV is prevalent in order to effectively allocate resources and target prevention efforts. #4 The very nature of name-based surveillance invokes the fear of discrimination for individuals with HIV. # 5 Alternative one can partially satisfy objective five to collect timely data. The latter part that states the data is to be used for effective resource allocation nullifies compliance with this alternative. The data is essentially no good. The available evidence indicates that rather than helping to control the spread of HIV and AIDS and encouraging earlier medical intervention, name reporting is likely to lead to decreased testing by those who most need it. That means that far from advancing the goal proponents of increased surveillance to obtain more accurate information and earlier medical intervention, name-based surveillance is likely to defeat them.Alternative TwoAlternative two is likely to meet all of the objectives. #1 which is the obtaining of data that is accurate to determine risk profiles of the HIV/AIDS epidemic is likely to be accomplished with a unique identifier surveillance method than any other at this time. By preserving the anonymity of the individuals being tested, a unique identifier system encourages individuals to be tested, which lends to the probability that the data obtained will be relatively accurate. #2 This alternative will provide tracking capabilities to determine where HIV is prevalent in order to effectively target prevention efforts. The unique identifier system will provide the city that the at-risk behavior happened, the method of transmission, the nationality, and sex of the individual being tested. #3 At the time of testing all individuals will have the option to attend free, preventative, safe practice classes. At the time of receiving a positive test result, the individual would be referred toone or more community resources that can assist him in treatment options. #4 While there is always the chance of some discrimination as a result of discovery, using the unique identifier system lessons the chance of accidental or malicious exposure. #5 With prompt attention and response of health officials and the use of computer systems the data can be reported in a timely manner, and decisions can be made for effective resource allocation. NOTE:I have rated the Fourth Objective as the most important. If individuals are deterred from being tested, the other objectives will not be met. Alternative Two will promote volunteer testing while Alternative One would succeed in deterring the groups that are most at-risk from being tested. These at-risk groups do not have a lot of faith in any governmental organization, due to their experiences within their lifestyle. They have consisted of intravenous drug users, prostitutes, pimps, ethnic minorities, and women. The name-based reporting methods will discourage testing for fear of discrimination. Until a time comes within our society that HIV is no longer such a remarkable disease, associated with the entire negative stigma, and that treatment is readily available to individuals who need it, name-based surveillance is simply not appropriate.RECOMMENDATIONAlternative two, using a unique identifier system is the best choice. It provides a solution to the problem of identifying a method of tracking HIV, in order to provide an accurate picture of trends in infection. This Alternative is able to achieve the goal to determine an effective method in which to track HIV cases, by satisfying all of the objectives. This alternative is the only feasible option, based on the evidence we have. Alternative two will supply information that will aid in controlling the spread of HIV/AIDS and encourage earlier medical treatment. This alternative meets all of the factors listed within the evaluation criteria of technical feasibility, economic and financial considerations, political viability, and administrative operability. . EXECUTIVE SUMMARY:Changes in the HIV/AIDS epidemic over the last couple of years has raised some concerns regarding the effectiveness of the current AIDS surveillance efforts. Currently, only persons that test positive with AIDS are reported systematically to public health officials. Because of the new treatment options, the time between infection of HIV and the progression to an AIDS diagnosis is increased. Public health officials are concerned that the surveillance of AIDS is not indicative of both the number and the demographics of the HIV-infected population.This has led many medical, public health officials, AIDS organizations and leaders that previously opposed making HIV a reportable condition, are reassessing their position and considering support for some kind of HIV reporting system. There are currently two methods under serious debate.Some public health officials are proposing a confidential, name reporting, HIV surveillance system. Proponents of this method argue that it is time to end the “AIDS exceptionalism” and use the traditional reporting system that is used on other infectious diseases. This would involve doctors, hospitals, and laboratories reporting to state health officials the names of all individuals testing positive with the HIV virus. Other health officials are proposing the use of an anonymous, unique identifier system. This method usually includes a portion of an individuals social security number, date of birth, and codes for race, gender and risk factor. The doctors, laboratories, and hospitals would report this information to public health officials when an individual tested positive with the HIV virus.That we need more accurate and timely data regarding current trends in the incidence of HIV, is indisputable. Getting accurate HIV statistics depends on the willingness of individuals to get tested. Timely data depends on the individuals seeking testing without postponement. Several studies indicate that approximately 60 percent of individuals would avoid HIV testing that is not anonymous. Other studies have indicated that testing associated with names reporting decreases the likelihood of an individual to retrieve their results by approximately 15 to 25 percent more than is likely with anonymous testing. The major concern is the discrimination and stigma individuals still feel is attached to HIV/AIDS.