ART Communication Strategy and Work Plan

“SMART Patient and SMARTProvider” Approach”

FY 07 –FY09

National AIDS Resource Center (NARC)

Ethiopia

Anthoula Assimacopoulou

Antje Becker-Benton

July 2008

Table of Contents

INTRODUCTION

1.BACKGROUND

2.APPLICABLE FRAMEWORKS AND MODELS

3.COMMUNICATION STRATEGY

4.MANAGEMENT AND IMPLEMENTATION PLAN

5.MONITORING AND EVALUATION PLAN

INTRODUCTION

This document is serving as the National AIDS Resource Center’s (NARC) ART communication strategy and workplan for the fiscal years (FY) 2007 – 2009. It is based on the Ethiopia National Antiretroviral Therapy (ART) Strategic Communication Framework[1] from 2004 but updated in both the analysis as well as its relationship to the current situation.

The strategic direction of this document has been strongly influenced by three technical consultants: In 2006, Sarah Gibson helped NARC to elaborate on the Ethiopia ART Communication Strategy. In March, 2008, Dr. Young Mi Kim helped update the document to incorporate the “SMARTClientSMARTProvider” approach and later incorporated a monitoring and evaluation plan. In June 2008 the ARC ART teampulled together the pieces, updated and finalized the strategy and developed detailed activities for FY 08 and FY 09. This document is integrating and summarizing all approaches into one workplan.

Part 1 contains a summary of formative research and basicframeworks used to develop NARC’s communication strategies and action plans.

Part 2 elaborates on the communication strategy and how its specific intervention activities for FY 07, FY 08 and FY 09 are interrelated, using the “SMARTClient SMARTProvider” approach.

Part 3 outlines the Management and Implementation Plan.

Part 4 shows the proposed monitoring and evaluation plan for FY 08 – FY 09.

1.BACKGROUND

1.1.Dynamics of the HIV/AIDS Epidemic in Ethiopia

The Beginning: HIV was first detected inEthiopia in stored sera in 1984 and the first AIDS cases were diagnosed in Addis Ababa, in 1986[2]. Two years later, high rates of HIV prevalence were found among long-distance truck drivers (13%) and commercial sex workers (17 %) living along the country’s main trading roads[3].In 1987 the MOH reacted with a national HIV/AIDS task force, while surveillance activities started in 1989.Since then the epidemic has expanded rapidly throughout the country.

Generalized epidemic with marked regional differences: At this point, Ethiopia is experiencing a low-level generalized HIV epidemic with an estimated adult HIV prevalence rate of 2.2%. Urban and rural areas show mean prevalence rates of 7.7 % and 1% respectively% (FMOH 2008).Although the overall rate is not as high as in other countries with generalized epidemics, given the size of Ethiopia’s population of 78 Million, this translates into the third largest number of people living with HIV/AIDS, next to South Africa and India.An additional challenge is formed by the fact that 84% of these 78 Million are living in rural areas.

People Living with HIV/AIDS and gender patterns: Over 1 millionEthiopians are currently living with HIV/AIDS.The female prevalence is 2.6% compared to only 1.7% among males, which means there are 1.5 infected women onone infected male.Infections seem to occur among women at a younger age, namely in their early 30s, than among men who are infected in their mid to late 30ies. Women and men age 35 – 49 were three times more likely to be HIV-infected compared with women and men age 15 – 24.[4] In 2006, 88,997 people died of AIDS while AIDS deaths for 2007 were estimated at 71,902.

Urban/rural and socio economic differences: Urban residents were associated with much higher HIV infection rates whereas geographic regions and ethnicity showed large differentials. In addition, higher education and higher household wealth – usually found in urban areas - were also positively associated with HIV infection. Currently the majority of PLHA lives in urban areas with an estimated 602,740, while 374,654 PLHA reside in rural area. Meanwhile the prevalence has leveled off in urban settings and continues to rise in rural areas. The current PEPFAR funded HIV prevention strategies solved these slightly contradicting data trends by continuing to focus more on urban than rural areas with attention to transport corridors, trade hubs and other areas frequented by rural dwellers.[5]

PMTCT:In 2008, 79,183 pregnant women are estimated to live with HIV while 14,083 HIV positive children are expected to be born (FMOH, 2007).[6]PMTCT uptake is fairly low in comparison with other African settings due to low ANC rates (28%) , low institutional delivery rates (6%), a mostly rural population with little service access; delay in opt-out testing policies, poor tracking and follow-up with mothers and low PMTCT resources during ART scale-up phase in Ethiopia.[7]

Pediatric ART and orphans and vulnerable children:About 135,000 children are estimated to live with HIV; 43,000 are in immediate need of ART and 21,000 die due to HIV annually (2007). The estimates for orphans in 2008 are at almost 5.5 million, 16% (or 898,350) of which will be due to AIDS.

Behavioral prevention issues and literacy levels: The Ethiopian BSS II showed that the target population’s knowledge of HIV/AIDS is reasonably high, however comprehensive knowledge is low, and so is self risk perception. Only 15.8% women and 28.7% men aged 15-49 years have comprehensive knowledge[8]. The knowledge score of women was generally lower than men across all regions of the country, and the variation of knowledge between urban and rural women—42.4% and 10%, was large. Misconceptions seem to exist with regard to how HIV is NOT transmitted, about ART side effects and false cures. This may have to do with the fact that about 66% of the adult population (15-49 years age) is illiterate[9]and most educational materials seem to use a fairly high literacy level. There is a substantial level of unprotected sex among adults, while premarital sex is quite common. This puts specifically young and unmarried women at risk as well as HIV negative partners in discordant couples.

Stigma:The 2005 BSS found that the level of AIDS-related stigma was considerably lower than that reported in the 2002 survey. Nevertheless, other recent studies (including ARC’s formative research) still indicatedthat stigma and discrimination are considered to form the main reason for non-disclosure of one’s status and non-adherence to ART and to be all pervasive particularly amongrural communities.

HIV/AIDS-related stigma and discrimination is a “process of devaluation” of people eitherliving with or associated with HIV and AIDS, according to UNAIDS ( stigma often stems from the pre-existing stigmatization of sex and intravenous druguse—two of the primary routes of HIV infection. Discrimination follows stigma and is theunfair and unjust treatment of an individual based on his or her real or perceived HIV status. Discrimination occurs when a distinction is made about a person that results in him or her being treated unfairly and unjustly on the basis of belonging, or being perceived to belong, to a particular group (UNAIDS 2003).

Frequent exposure to AIDS specific mass media and other information sources have shown to reduce levels of stigma. A study from 2004 found that respondents who received AIDS information through "TV" and "friends/relatives" were more likely to have fewer stigmatizing beliefs than those who received such information in other mediums.[10] The 2008 formative research study countered this with the remark that mass media and other efforts have only succeeded in putting pressures on people not to show their prejudices as openly.According to them, stigma and discrimination is continuously perpetuated by familymembers, neighbors and work mates.Stigma at facility level, e.g., isolating the services into one corner of the building tends to form strong barriers for utilization.

Anecdotal information indicates that clients on ART often leave their workplaces due to self-stigma, while many workplace policies are not enforced. There are hardly any positive role models in the public, with the result that families and parents do not allow PLHA to model for posters and other mass media activities.

Newest trends: A most recent study[11] synthesizing previously disconnected national data uncovered a number of major findings:

  • The epidemic seems less severe, less generalized and more heterogeneous than previously believed, with marked regional variations;
  • The diversity of the HIV epidemic seems to be related to sexual behavior patternsand factors such as the presence or absence of male circumcision (e.g., Gambela region unexpectedly exhibited the highest prevalence of any area);
  • Small towns and market centers may be HIV hot-spots that have had marginal attention in HIV prevention and care efforts to date;
  • Traditional at-risk groups such as sex workers seem to be reducing some of their risky behaviors; while overall sex work is on the rise.
  • Young populations, especially never-married sexually active females have the greatest risk of HIV infection in the country;
  • Discordant couples are also of great concern, puzzling ART clients. This points to a clear need for couple counseling services which are presently non-existent or rudimentary. ARC formative research concluded that the situation for the female partner often ends in divorce and sexual violence (if she is not yet positive).
  • The lack of recent data and research, especially on at-risk groups, makes further conclusions difficult, and highlights the clear need for more research.

Ethiopia’s national response to the epidemic has shown progress especially in the area of treatment roll out. The government with support of US-Government (USG) is following a regionalized ART strategy in all regions providing ART to hospitals and health centres in the private and public sectors.

1.1.1.ART Service Delivery and Uptake

There are currently 138 hospitals and 635 health centers operational to cater to the entire population.[12]Currently, one provider takes care of approximately 40,000 people. In comparison, WHO recommends a ratio of 1 physician for 10,000 clients and 1 nurse for 5000 clients.[13]

Launched in 2003, as of March 2008[14] there are 100,503 patients on ARVs of which 5,096 are children. They are cared for in only 337 treatment sites (93 public hospitals, 14 private hospitals, 12 military hospitals, 215 health centers and 3 NGO clinics) in all of the country’s 9 regional states.[15]

Facility assessments show that health professionals are overstretched, overworked, under compensated and this overstretched capability has serious consequences on quality care provision.Providers are further challenged[16]with complicated and changing treatment policy (single dose, first line and second line and fixed dose combination treatment availability) and a lack of up to date reference materials and training in ART, VCT,pediatric HIV and nutrition among practitioners on the lower end of the clinical hierarchy. In general, even though this has not yet been part of systematic research, paternalistic models of health care, such as social distance between patients and providers and other cultural norms seem to discourage patients from playing an active role in health consultations (weak provider/client relationship).

Formative research among ART clients[17] found that they consider health services to be improving in general, but still would require a strong increase in the number of providers and improvement of available space. Although the quality of HIV related services is reported to be much better than that of the general health services, shortages of staff, of space and of non-ART drugs cause tremendous discomfort. Clients may not be using services due to these shortages. Clients also do not trust providers fully to keep confidentiality and feel procedures on how to keep test results confidential are not well enough explained to them.

Potentially related to that, 289,000 people with HIV/AIDS are still in need of ART, while about 17,000 are lost to follow up.[18]

DHS and BSS (2006) reports showed some lack of knowledge among a variety of population groups, including providers, about where, how and when PMTCT and ART programs are carried out; but exposure to mass media messages seemed to have reached most of its target audiences with information about the general availability of free ART and PMTCT services.

1.1.1.1.Adherence Challenges

Adherence is defined as the extent to which patient’s behaviors coincides with the prescribed health care regimen as agreed upon through a shared decision-making process between patients and the health care provider. This includes taking them at the right time and in the right amount. (WHO)

While ART requires a 95% adherence rate, patients rarely achieve more than 80% adherence rate during treatment of chronic illnesses. Nevertheless, a study done in Ethiopia found that self reported adherence among the study population was high with 96.6%[19]. Travel time to treatment sites averaged an hour, while travel cost was between 44 US cents and 2.1 US$ which is considerable. Medicine labeling tended to be a problem as patients threw away the ART packaging to avoid stigma.

Adherence studies in Ethiopia found as facility based factors affecting patient adherence:

  • High staff turn over, heavy work load and long waiting times;
  • Shortages of OI drugs, insufficient space and inadequate laboratory services
  • Poor record keeping/documentation and inability to track patients
  • Inadequate counseling

Sit-in observations showed that the average consultation time for new patients was 15 – 30 and for re-visits under 10 minutes; Secondary prevention information was generally not given to re-visiting patients and information on importance about adherence was low for all facilities.

Key patient/community related retention challenges to ART as identified by the study were:

  • Hindrances due to faith/religious beliefs. This was confirmed by ARC’s formative research study among ART clients and providers: ART is widely recognized as effective therapy for AIDS. Nevertheless, alternative therapies are praised as a cure, particularly “holy water” was mentioned in almost all places. “Together with stigma and discrimination, the promotion of false cures for AIDS forms a major barrier to adherence to treatment.”[20] Even though the Patriarch of the Ethiopian Orthodox church has publicly declared that ART and “holy water” are compatible treatments (and not cures), lower level clergy seem to continue to spread misconceptions.
  • Lack of food to accompany the intake of drugs. This relates to the serious food insecurity in Ethiopia, aggravated by the risen food prices and galloping inflation, which has recently hit international press coverage[21].
  • Absence of good community support or social support services.

The table below gives a summary of interviews with patients, peer counselors and medical staff:

Factors Affecting Adherence in Ethiopia

Service delivery / Community / Individual
Distance of service / Disinformation / Economic
  • Poverty, food, shelter
  • OI drug cost
  • Transport
  • Time

Cost for transport / Stigma and discrimination / ADRs[22] and OIs
Long waiting time / Religious beliefs / Denial of status and lack of disclosure
Poor/lack of laboratory services / Lack of support from family and community / Forgetfulness
Lack of and/or cost for OI drugs / Ideas and understanding of health, illness and treatment / Stressful and unsafe way of life
Heavy patient load/few staff / Support – family, friends, fellow patients, support groups, work, community / Lack of knowledge on illness and ART
Lack of counseling / Loss of hope

Apart from various facility based recommendations for improvement (reduce transport cost and waiting times, increase drug supply, improve adherence counseling, laboratory services) the study suggested not to overlook the issues of poverty and access; it was further recommendedto focus on reduction of stigma and denial, on strengthening of community linkages and of self-esteem and empowerment of clients as well as motivation of clinical staff.

1.1.1.2.Pediatric and Early Teen ART[23]

The first HIV exposed newborn was identified in 1986. Prior to 2002 pediatric HIV care was limited to provision of Cotrimoxazole preventive therapy and other supportive care. Free ARVs were made available between 2002- 2003.In few private institutions and government hospitals selected pediatric AIDS cases were treated with crushed adult tablets.In 2005 pediatric ARV formulations were available for free.

Although there has been a dramatic increase in number of children who are on ART since 2005, it is estimated that 43,000 children in Ethiopia are still in need of ART (2007). Only 7.2 of the eligible children for ART are actually receiving treatment and care. The reasons for this according to available sources include

  • Technical barriers

Diagnostic challenges

Relative failure to implement effective PMTCT

Infrastructure & system capacity limitations

Human resource requirements

  • Developmental challenges in pediatrics

Children are not small adults

Complexity of ART administration

Further literature research is urgently needed here to find out if caretakers may form barriers to testing and ART uptake for the positive children in their care because they may be in denial of being positive themselves.

We secondly, need to know how many HIV positive adolescents there are on and eligible for ART, and how many of those do know about their status.

Below are the results from formative research in Uganda, which strongly show caretakers of children in need of more information and support in order to increase uptake; it also suggests to make early teens an audience in their own right to address their specific problem combination directly.

(Note: Until we are able to do a desk review and some more formative research in Ethiopia, the pediatric strategy part needs to be considered as draft. A separate brief strategy addendum will hash out the details.)

Pediatric adherence in Uganda
Barriers to adherence for caretakers of children(age 0 – 9) include: drug fatigue; feeling it is too difficult/not worth it/don’t care; stress of timing drugs all the time; being too busy; not involving others – alternative caretakers and health workers; and, concerns about disclosure and stigma.
For adolescents on ART (age 10 – 15), these issues are compounded by wanting to fit in and “be normal”, not wanting others to see them take their drugs (especially in boarding schools), and forgetting them if/when they travel from one location to another. Factors that have been shown to increase adherence include disclosing to the child or adolescent and including them in maintaining the drug regimen; seeing the results of what happens when one stops taking the drugs (falling sick); a good relationship between the caretaker and the child; and, social support from other caretakers/family members, the health worker, and/or treatment supporters.

1.2.Provider and Client IEC Needs /Formative Research