INTRODUCTION
Few issues in the twentieth century have created a unanimous concern all around the world, affecting and modifying the lives of people as has HIV and AIDS. The disease has a 100% fatality rate, a long infection period and a high propensity to mutate forming drug resistant strains. Health costs of nations have spiraled as present modalities of treatment remain out of reach for lower socioeconomic strata, which ironically is the most affected part of the population. Social stigma attached to the disease persists even after two decades and having a sexual mode of spread, the disease is still treated as a curse owing to one’s perversion. The HIV virus was never bereft of controversy and will rarely be.
HISTORY OF HIV/AIDS
The disease was first identified in March, 2001 when around this date a number of cases of a rare lung disorder, Pneumocystis Carnii pneumonia (PCP) were reported in both California and New York (Avert.org, 2007). There were also cases of Kaposi’s sarcoma (KS) reported in gay men in New York although the disease till then was one of old age. By April of the same year, CDC had noticed this increase and on June 5, 1981 published a report about the occurrence, without identifiable cause of PCP in 5 men who were homosexuals in Los Angeles (MMWR Weekly, 1981). This is touted as the “beginning” of AIDS.
When first identified AIDS was known to affect only gay men and so came to be known as “Gay Related Immune Disorder” (Brennan, R.O. and Durack, D.T., 1981). In fact in July, 1981 Dr Curran of CDC went ahead and stated that, “there was no apparent danger to non-homosexuals from the contagion….. no cases have been reported to date outside the homosexual community or women” (Altman, L.K, 1981). Just five months later in December, 1981 first cases of PCP were reported outside the homosexual community in intravenous drug users (IDU). With the occurrence of disease in non-homosexuals the name of “Gay Related Immune Disorder” became redundant. The acronym AIDS was suggested at a meeting in July and the CDC properly defined it in September, 1982 (Avert.org, 2007).
Early years were rife with rumors about AIDS, originating out of lack of understanding about the disease. Even the mode of transmission was debatable. In March, 1983 CDC defined people at high risk and included homosexuals, heterosexuals with multiple partners, hemophiliacs, IV drug users, Haitian immigrants and sexual partners of a person with AIDS or at risk of AIDS (MMWR Weekly, 1983). The inclusion of Haitians was just the first event of stigmatization. Social Security administration was accused of interviewing patients on phone rather than face to face while gays faced social discrimination owing to the disease’s dubious mode of spread (Enlow, R., 1984). The causative agent was identified by French in May 1983 and named lymphadenopathy- associated virus (LAV) (Connor S. and Kingman S., 1988, p.35), however the Americans identified a year later and named it as HTLV-III (Willis C., 1986). The confusion was resolved in May, 1986 when a new name, HIV (human immunodeficiency virus) was adopted.( Coffin J. et al, 1986).
Nevertheless, it was not until six years from the first reported case of AIDS that any significant development was made on the front of treatment. It was in September, 1986 that the first clinical trials for Azidothymidine (AZT) as a candidate for AIDS drug were started (Fischl M. A. et al, 1987). In March, 1987 it was approved by FDA as the first anti-retroviral drug for treatment of AIDS (‘Approval of AZT', 1987). However, by January, 1993 first strains of AZT resistant strains of HIV were reported. By the middle of 1996 a multiple drug treatment strategy named as HAART therapy came into being and additions to the regimen are still being made as newer drugs and substitutes are identified (‘History of HIV/AIDS’, 2007).
POPULATION & GEOGRAPHY OF HIV/AIDS
The HIV epidemic is disproportionate in its affect, severely impacting some regions and populations than others. Sub-Saharan Africa will account for 22.5 million cases living with HIV (69% of the total cases worldwide) by the end of year 2007, 61% of which will be females. (‘2007 AIDS Epidemic Update’, UNAIDS, 2007) Ironically, in USA 77% of a total of 437,982 people living with HIV in 2005 were males (‘Cases of HIV infection and AIDS in the United States and Dependent Areas-2005’ (AIDSUSDA), CDC, 2007). The three states of California, New York and Florida have accounted for 43% of cumulative total number of AIDS/HIV cases reported in USA till the end of year 2005 (CDC Wonder Database, 2007). A total of 36% of a total of 40,608 new cases of HIV reported in 2005, were from these three states. Missouri reported 386 new cases of HIV in 2005 (AIDSUSDA, 2007).
During the 1980s, there were rapid increases in the number of AIDS cases and deaths of people with AIDS. Cases peaked with the 1993 expansion of the case definition to a high of 104,713 cases in 1993, and then declined. With the widespread use of HAART, drops in both cases and deaths began in 1996 (Surveillance Data for 1981-2002, CDC WONDER On-line Database, December 2005(CDC)). The rate of decrease in AIDS diagnoses slowed in the late 1990s reaching a plateau, the number of diagnoses increased slightly each year from 2000 to 2002, reaching 43,950 in 2002 and fell to 40,608 in 2005. The number of deaths among people with AIDS has remained relatively stable since 1999; there were an estimated 17,011 deaths in 2005 (CDC, 2007).
During the 1990s, the epidemic showed a growing proportion of AIDS cases among black people and Hispanics and in women, and toward a decreasing proportion in MSM, although this group still remains the largest single exposure group. Black people and Hispanics have been disproportionately affected since the early years of the epidemic. In absolute numbers, blacks have outnumbered whites in new AIDS diagnoses and deaths since 1996, and in the number of people living with AIDS since 1998. (Surveillance Data for 1981-2002)
From 2000 to 2005, the estimated number of new AIDS cases increased in all racial/ethnic groups. Over the same period, the estimated number of new AIDS diagnoses increased by 17% among women and by 16% among men. The number of new cases probably due to heterosexual contact grew by 42%; cases probably due to sex between men grew by 24%; and the number among injecting drug users fell by less than 1% (AIDSUSDA, 2007; CDC, 2007)
During 2005 there were an estimated 58 pediatric AIDS diagnoses, compared to 187 in 1999 and 799 in 1994. The decline in pediatric AIDS incidence is associated with more HIV testing of pregnant women and the use of Zidovudine (AZT) by HIV-infected pregnant women and their newborn infants (AIDSUSDA, 2007; Surveillance Data for 1981-2002).
The age group 35-44 years accounted for 38% of all AIDS cases diagnosed in 2005. At the end of 2005, the CDC estimates that there were 433,760 people living with HIV/AIDS in the 37 areas that have a history of confidential name-based HIV reporting, based on reported diagnoses and deaths (AIDSUSDA, 2007). However, the total number of people living in the USA with HIV/AIDS is thought to be between 1,039,000 and 1,185,000. The discrepancy between these figures is due to several factors including (CDC, 2007):
• Confidential name-based reporting of HIV diagnoses has not yet been implemented in all states. (33 states are included)
• Anonymous tests, including home tests, are excluded from case reports
• One in every four people living with HIV has not even had their infection diagnosed, let alone reported.
Within Missouri State the racial disparity is less pronounced as whites accounted for 53.8% cases, but gender differences are wider as 83.8% cases were in males (new cases in 2005). Most of these cases occur in urban settings- Saint Louis city, Saint Louis County and Kansas City accounting for 69% of 415 cases of HIV diagnosed in 2005. MSM were the most affected with 72.9% cases and another 2.9% in MSM using IV drugs while heterosexual contact accounting for 21%. It’s heartening to know that only 12 cases were due to IV drug use and none due to Blood transfusion (MICA, 2007).
PRESENT CHALLENGES AND PROBLEMS
ASSESSMENT
The CDC has a HIV/AIDS surveillance program which collects data from the 37 areas (33 states and 4 U.S. dependent areas) that have had confidential name-based HIV infection reporting since 2001.The method of applying the serological testing algorithm for recent HIV seroconversion (STARHS) to the serum specimens from which the diagnosis of HIV infection was made helps in differentiating between recent infection and infections occurring some time in the past.(CDC, 2007) However, recent estimates using a new diagnosis technique may raise the numbers upwards by 50% from the previous incidence rates for 2001-2005 (Harris, G., 2007) .
Recently The United Nations’ UNAIDS agency reported that it had overestimated Global AIDS numbers and that improved survey methods used have brought down the estimated figure of people living with HIV/AIDS to 33.2 million from the previous 39.5 million (‘U.N. Overestimated Global AIDS Numbers’, November 20, 2007).
POLICY CHALLENGES
IV drug use is a well known route of HIV transmission, yet injection drug use (IDU) contributes to the epidemic’s spread far beyond the circle of those who inject. IDU behavior, having sex with an IDU or being born of mother who contracted HIV from IDU behavior, all have accounted for around 1/3rd of all cases till date. Although Drug abuse treatment program is the ideal way for HIV prevention, the present health system does not have the capacity to provide it. In this scenario, using sterile syringes only once remains the safest and most effective way of preventing transmission. However sterile syringe exchange programs and laws authorizing needle exchange are present in only 28 states as of 2005 (Update: Syringe Exchange Programs-United States-2005, MMWR, 2007).
The approach to HIV/AIDS prevention strategy cannot be more ironic than in the case of educational programs. In spite HIV being classified as an STD by most, only 35 states + DC have mandated STI/HIV education in schools. Most states, including some that do not mandate the instruction itself, also place requirements on how abstinence or contraception should be handled when included in a school district’s curriculum. This guidance is heavily weighted toward stressing abstinence; in contrast, while many states allow or require that contraception be covered, none requires that it be stressed. Further affecting whether students receive instruction on sex or STIs/HIV are parental consent requirements or the more frequent “opt-out” clauses, which allow parents to remove students from instruction the parents find objectionable (Sex and STD/HIV Education, State Policies in Brief, 2005).
Around 20% of people living with HIV/AIDS are uninsured. Some of them are eligible for the federally sponsored schemes but are not covered under any insurance scheme owing to the long administrative delays before a person can be enrolled in either of the scheme. The implementation of the new citizenship and identity documentation requirement set forth in the Deficit Reduction Act, 2005 has further increased administrative delays in processing applications and renewals resulting in postponement and denial of coverage often for individuals otherwise eligible for the program (The Centers for Medicare and Medicaid Services (CMS), 2004; Committee on Public Financing and Delivery of HIV care (CPFDH), 2005).
ASSURANCE
Knowledge about the disease and advancement in treatment in the form of HAART therapy has changed the perception of HIV/AIDS as an acutely fatal infectious disease to a chronic one. The near constant incidence rate and declining mortality rate of HIV further indicate that more people are living with HIV/AIDS. Today Americans with HIV can expect to live 24 years as against a survival rate of 10 years in the 90s (Mike Stobbe, 2006). Nevertheless, this comes at a cost of $600,000 for health care over those two decades. In spite of federal spending of $8.7 billion dollars on health care for HIV/AIDS (CMS, 2004), spiraling costs have left big lacunae in the present health coverage which will increase as the number of people living with HIV/AIDS keeps on rising.
In 1980s HIV was perceived to be affecting only MSM and even after two decades of the disease, the picture hasn’t changed much. After showing a decline in the 1990s, there has been a recent rise in the number of new cases reported for MSM. In 2002 they accounted for 71% of all infections even though only 5% to 7% of adult males identify themselves as MSM. It is unclear whether the recent rise in infection rates in MSM is due to more testing or is it due to a rise in infection (Surveillance Data for 1981-2002).
Populations of minority races and ethnicities continue to be disproportionately affected by the HIV epidemic. African Americans are the hardest hit race. According to the 2000 census, blacks make up approximately 13% of the US population. However, in 2005, blacks accounted for 49% of new HIV/AIDS diagnoses in the USA (Surveillance Data for 1981-2002; AIDSUSDA, 2007). The reasons are not directly related to race or ethnicity, but rather to some of the barriers faced by many African Americans. These barriers can include poverty, sexually transmitted diseases, and stigma (negative attitudes, beliefs, and actions directed at people living with HIV/AIDS or directed at people who do things that might put them at risk for HIV).
The HIV/AIDS epidemic is a serious threat to the Hispanic/Latino community. Although they made up only about 13% of the population of USA, they accounted for 16% (155,179) of the estimated 952,629 AIDS cases diagnosed since the beginning of the epidemic (Surveillance Data for 1981-2002). In addition to being a population seriously affected by HIV, Hispanics/Latinos continue to face challenges in accessing health care, prevention services, and HIV treatment. The migration patterns, social structure, language barriers, and lack of access to regular health care among transient Hispanic/Latino immigrants amplify the problem.
PUBLIC HEALTH SYSTEM RESPONSE
FEDERAL LEVEL
The three basic tenets of public health are met by the approach of federal government towards the HIV/AIDS health issue. The CDC HIV/AIDS surveillance program collects data for both HIV infections and AIDS rates. Surveillance data on HIV infections provide a more complete picture of the epidemic and the need for prevention and care services than does the picture provided by AIDS data alone. The National HIV Behavioral Surveillance (NHBS) System, CDC collects risk behavior data from three populations at high risk for HIV infection: men who have sex with men (MSM), injection-drug users, and heterosexual adults in areas in which HIV is prevalent.
The federal programs that provide care to people living with HIV/AIDS operate through two financing mechanisms: mandatory annual spending and discretionary annual funding for specific services. These financing mechanisms include federal spending on Medicare, Medicaid, Ryan White CARE act, SAMHSA funding, HOPSA funding, CDC HIV/AIDS funding and OMH funding. It spent $18 billion in fiscal year 2004 for research, prevention, care and assistance, and international programs and activities. In the year 2002, $14.7 billion were spent of which 51.7% ($7.6 billion) were spent mandatory services for people with HIV/AIDS (CPFDH, 2005).
A large proportion of people with HIV/AIDS are low-income or below low-income and disabled; thus, Medicaid forms an important source of insurance coverage accounting for 43% of them. The federal government spent $4.2 billion on Medicaid related AIDS services while $3.5 billion was pooled in by individual states. Overall the program covers 44 percent of people living with HIV, 55% of people living with AIDS and 90% of children with AIDS. The federal guidelines require all states to provide mandatory services which include hospital, physician, lab and X-ray, home health, and nursing services (CPFDH, 2005).
The Federally sponsored Medicare covers 6% of the population with HIV/AIDS. It includes services for the elderly and those who are permanently disabled. Through its three ‘Parts’, Medicare covers for hospital care, physician, hospice, nursing, home health, medical equipment & supplies, and prescription drugs. The Ryan White CARE act addresses the gaps in financing care for HIV/AIDS and to provide financial support to cities that bear disproportionate burden of HIV/AIDS cases (CPFDH, 2005; CMS, 2004).
The federal Government has tried to integrate services for high risk groups through SAMHSA and OMH funding. Substance Abuse and Mental Health Services Administration (SAMHSA) works on decreasing transmission of HIV in IV drug users by providing mental health and substance abuse prevention and treatment services.
CDC has developed effective intervention strategies for high risk groups like Peers Reaching Out and Modeling Intervention Strategies (PROMISE) and Many Men, Many Voices for MSM. It works in collaboration with states and counties to develop these HIV/AIDS programs tailored to a region/ population.
MISSOURI STATE LEVEL
The Medicaid works on a sharing basis; the federal government provides matching funds for state funds. The state of Missouri was matched $4 million in federal grant for $2.3 billion for all services included in Medicare in the year 2004. States are allowed broad flexibility in designing their Medicaid programs, and consequently there is significant variation in eligibility, benefits, provider payments, and other aspects of the program at state level. Thus, a person may be eligible in one state may not be in the other owing to wide variation in policies. Most adults with HIV/AIDS who qualify for Medicaid do so because they meet the disability and income criteria of the federal Supplemental Security Income program. Some adults may qualify for Medicaid through a state’s medically needy program. For those who are not covered under Medicaid and Medicare the Governor’s Plan for Uninsured provides coverage (CPFDH, 2005).
With limited funding dedicated to HIV prevention efforts, CDC requires states to prioritize prevention dollars to those populations that are most epidemiologically at risk for infection. Given Missouri’s rates, the priority populations are White MSM, African American MSM and African American Women. IV drug users and Hispanics do not account for a significant proportion of HIV/AIDS patients in Missouri; nevertheless efforts are being made to prevent any rise among them (Sandra Hentges, personal communication, November 29, 2007). Missouri State has a policy in place which authorizes needle exchange program under the Department of Health. Issues of privacy and confidentiality have been addressed by closing all identifying records under this program ("SB 0166, Establish a Needle Exchange Program within the Department of Health," 2003).
“The MSM population has been the focus of over 60% of our prevention efforts for a number of years” says Sandra Hentges (November 29, 2007). Through community-based organizations as well as local health agencies, intensive, science-based interventions are provided to this population that promotes behavior change. However, with that said, this population is getting younger and younger and many of the youngest MSM have not had to live through the traumatic years of watching their friends and lovers die from HIV disease. It has now become a chronic health condition and people with HIV are living longer productive lives so the risk of contracting this disease doesn’t seem to be motivating the younger generation to protect themselves. In addition, they are tired of hearing the same messages in the same way about HIV. The state is currently working with CDC to provide interventions that are new and innovative to spark the attention of a generation who isn’t worried about contracting this still deadly virus (Sandra H, 2007).
Evidence based public health interventions have added a new dimension to the present public health programs. Of note here is the L.I.F.E. program which is striving to combine conventional measures of prevention and treatment with psychological and social aspects ("Shanti L.I.F.E. Program,").
LOCAL
The Saint Louis County and City have a combined METRO program for HIV, STD and Hepatitis. The program receives funding from the state and also through Title funds under the Ryan White CARE act as the city is included in EML list. The program focuses on increasing HIV testing rates amongst high risk groups besides integrating health services for STDs and Hepatitis with HIV care. Given Saint Louis’ case rates, African Americans and MSM are the most affected population. HIV testing services are offered directly by the department and indirectly through private organizations. IV drug users don’t form a significant population in Saint Louis HIV region; however efforts are being made to restrict the numbers before they become a problem (Wrigley D., Personal Communication, November 27, 2007).
One of the most significant problems being faced at local level is case management. At present the transition from HIV detection to treatment program takes anywhere between 2 weeks to 2 months. Approximately 50% of cases detected on HIV screening tests are lost before they can be started on medication by attaching them to a curative service. To address this particular issue the city is going to launch a new program from January 1, 2008 by having a provision of temporary case managers. They will follow the patient right from detection to the point where the person is either inducted in a treatment program or attached to a permanent case manager (Wrigley, 2007)
Saint Louis County’s STD department tries to integrate services for both STDs and
HIV. They offer voluntary HIV testing. An estimated 25%-30% of syphilis cases from this year were co-infected with HIV. This proves to be a very challenging factor due to the compromised immune system of these patients and the lack of obvious symptoms for this infection. Many of these patients find out about their syphilis infection because their providers are running routine screening test during their exam. Whenever a patient is diagnosed with a secondary infection, partner notification is offered for all infections as well as information on the patient’s rights and responsibilities (Whittington R., Personal Communication, November 29, 2007).
PRIVATE
Not for profit organizations like Saint Louis Effort for AIDS, The AIDS Foundation of Saint Louis and Red Cross work as an important link between the government and HIV/AIDS patients. These community organizations have expertise in delivery of health services like HIV testing and are more favored by at-risk individuals owing to privacy and confidentiality issues, and stigma attached with government services. Thus, Saint Louis Metro AIDS/HIV project works in close conjunction with these organizations and outsource its work to them by giving grants.
These organizations offer HIV testing at the center and also run mobile HIV testing vans. These vans offer door to door testing and confidentiality is maintained by two separate cabins for testing (Cheryl R. Oliver, Personal Communication, November 28, 2007). If an MSM is diagnosed with HIV, his contacts are offered HIV testing and counseling about their rights at any place of their choice. They also offer case management and work with the city health department in ensuring that a HIV diseased individual is covered under some form of insurance (Cheryl, 2007).
RECOMMENDATIONS
The ‘Committee on Public Financing and Delivery of HIV Care’, acknowledged that the present HIV/AIDS care system requires fundamental redesign, not just minor corrections. It implies that allocating more funds to the present system will not necessarily achieve better results, what is required is a change in the design of the delivery system and a redesigned financing system (CPFDH, 2005).
The present Medicare guidelines are designed such that if a low income person cannot avail funds if he is not disabled, although the same funds could have prevented a disability. This policy of treating a disease and not preventing it is pervasive throughout the public health system and is flawed in its ideology itself.
HAART therapy has worked in terms of increasing the survival time and quality of life of HIV diseased. However, the high cost of this treatment regimen has been blamed for funding deficits. What is required are ways of decreasing the cost of drugs and treatments by measures to discontinue current patents on these life saving drugs. A federal ceiling of drug prices used in some other federal programs can also work towards lowering the cost.
Uniformity in policy amongst all states is required. The present laws on needle sharing programs and Sex education programs in schools are two areas of prime concern. It has to be realized that these are practical options to decrease HIV/AIDS rates in the present scenario. Also stress needs to be placed on contraception than abstinence in states which already have laws.
At local level, more preventive measures have to be taken. HIV testing is far-reaching in its scope, yet it cannot be classified as a preventive tool as it does not affect risky behavior among individuals. More educational services and community interventions have to be implemented.
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