Provision and Access

Gaps in Research

1.: Barriers such as cost of medications, stigma, long clinic waits, lack of food, and child-care responsibilities, among others, may discourage women living with HIV from accessing antiretroviral therapy.
2.: Initiatives that provide for early diagnosis and appropriate longitudinal care prior to treatment eligibility are needed to reduce mortality rates and costs among adults accessing treatment.
3.: Adequate supply planning and secure funding are needed to avoid ARV stock-outs and use of obsolete medications.
4.: Information systems need better data on distribution of services, effectiveness of services, and how well services are matched to populations and subpopulations in need of HIV treatment and care.
5.: Interventions are needed to counter gender norms that discourage men from attending health services until they are extremely sick.
6.: HIV surveillance systems do not count those over age fifty, particularly women, and treatment guidelines are missing for this age group.
7.: Well-functioning laboratory systems are needed to measure viral load via PCR to assess effectiveness of treatment.
8.: Interventions are needed to ensure that prisoners have ongoing access to HIV treatment and care.
9.: Additional outreach programs are needed for patients who miss ART clinic visits or fail to initiate treatment.
10.: Scale up of testing is needed with competent staff and labs in order to assess CD4 counts and link those who test HIV-positive to treatment.
11.: Increased links are needed for women who access treatment to receive counseling concerning desired children and contraception.
12.: Treatment programs need strategies to retain patients on treatment for countries affected by humanitarian emergencies (refugees of war, internally displaced people, etc.).
13.: Improvements are needed in health services, such as increased or flexible clinic hours, to reduce wait times and to encourage ART initiation.
14.: Treatment programs that meet the needs of key populations such as sex workers and trans populations are needed.
15.: Improved support systems for lay or basic health workers are needed to facilitate effective care in areas where lay health care workers provide a significant proportion of HIV care.
16.: Research is needed on treating anemia, malnutrition and other dietary conditions as well as on optimum micronutrients for patients accessing ART and for patients prior to accessing treatment.
17.: Pregnant women living with HIV need timely access to CD4 count testing and results to access treatment.
18.: Adolescents living with HIV need information and services through adolescent-friendly HIV and contraception services.

1. Barriers such as cost of medications, stigma, long clinic waits, lack of food, and child-care responsibilities, among others, may discourage women living with HIV from accessing antiretroviral therapy. A study found that patients who were living with HIV but did not access antiretroviral therapy were twice as likely as patients on antiretroviral therapy to report not having enough food to take with treatment as a concern, in addition to concerns about cost barriers. Another study found that cost of ARVs, with direct out of pocket payment at point of care delivery decreased access to ARVs. Another study found transport costs and waiting time a barrier to access to treatment. Increased efforts are needed so that those in pre-ART care understand that HIV can be transmitted prior to ART eligibility.

Gap noted, for example in Zambia (Fox et al., 2010a); Burkina Faso (Kouanda et al., 2010b); India (Thomas et al., 2009); Mozambique (Posse and Baltussen, 2009); Uganda (Geng et al., 2010b; Tuller et al., 2010; McGrath et al., 2012); Zimbabwe (Skovdal et al., 2011c); Colombia (Arrivillaga et al., 2009); Tanzania (Wringe et al., 2009 cited in Geng et al., 2010a); Indonesia (Riyarto et al., 2010); Sub-Saharan Africa (Mills et al., 2006); South Africa (Smith et al., 2013a); globally (WHO, 2013).

2. Initiatives that provide for early diagnosis and appropriate longitudinal care prior to treatment eligibility are needed to reduce mortality rates and costs among adults accessing treatment. A review found that early mortality among adults accessing antiretroviral therapy can be attributed to late diagnosis of HIV. Despite multiple interactions with parts of the healthcare system, a study of women in Uganda found that late presentation for HIV care resulted largely from the, “inability of the medical system to link women to appropriate care,” (McGrath et al., 2012: 1095). Women entered care only when symptomatic. Another study found that more than a quarter of HIV patients in care prior to ART initiation did not start ART according to national guideline criteria. Another study found that women did not know where to go to access treatment. A review found that a process is needed to optimize transfers of care without treatment interruption and with appropriate medical documentation. Another study found that over half of patients who were not yet known to be eligible for ART at enrollment but who had tested HIV-positive, including a quarter who had CD4 counts taken, were lost to follow up. Another review found that asymptomatic patients perceived little need to initiate ART. Another study found that those with higher CD4 counts who were not yet eligible for ART lacked social support and social capital, yet needed this support.

Gap noted, for example, in Sub-Saharan Africa (Lahuerta et al., 2013; Mugglin et al., 2012b; Kranzer et al., 2012; Lawn et al., 2008); resource-limited settings (Geng et al., 2010a); Malawi and Kenya (Zachariah et al., 2011b; MacPherson et al., 2012a); China (Zhou et al., 2011); Ethiopia (Alemayehu et al., 2009; Mulissa et al., 2010; Assefa et al., 2011b); Vietnam (Nam et al., 2010); Uganda (McGrath et al., 2012; Wakeham et al., 2010; Miiro et al., 2010); Mozambique (Auld et al., 2011; Lahuerta et al., 2012; Pati et al., 2013); Malawi (McGrath et al., 2010); Kenya (Tayler-Smith et al., 2011; Guthrie et al., 2011); West Africa (Lewden et al., 2012); East Africa (Mujugira et al., 2012); South Africa (Lessells et al., 2014; Smith et al., 2013a; Faal et al., 2011; Clouse et al., 2013; McGrath et al., 2013); Zambia (Scott et al., 2014); globally (WHO, 2013); Kenya, Mozambique, Rwanda and Tanzania (Lahuerta et al., 2014); global review of PEPFAR-funded countries (IOM, 2013).

3. Adequate supply planning and secure funding are needed to avoid ARV stock-outs and use of obsolete medications. "As ART cannot be interrupted without risk of development of drug resistance – and hence worse survival – people on ART need an uninterrupted supply…" (WHO, 2014a: 32). The Coordinated Procurement Planning Initiative, which monitors the supply of ARVs in 22 countries, found that at any point half of these countries were at high risk of stock out (WHO, 2014a). Between 30% and 45% of low- and middle-income countries have annually reported stock outs in recent years (WHO, 2014a). Studies in multiple sub-Saharan African countries report stock shortages and stock outs as major risk factors for treatment interruption. "….Models of supply chain management need to be directly tied to health outcomes to ensure that the priority is improving health rather then reducing costs" (Ying et al., 2014, para 17).

Gap noted globally in lower- and middle-income countries (WHO, 2014a; Ying et al., 2014) Côte d'Ivoire (Pasquet et al., 2010 cited in Kranzer and Ford, 2011); Cameroon (Marcellin et al., 2008 cited in Kranzer and Ford, 2011); globally in PEPFAR-supported countries (IOM, 2013); Malawi and Uganda (Hsieh, 2013).

4. Information systems need better data on distribution of services, effectiveness of services, and how well services are matched to populations and subpopulations in need of HIV treatment and care. A review of PEPFAR data plus site visits to 13 PEPFAR partner countries plus 400 interviews found a lack of data on distribution of services and effectiveness of services for treatment of people living with HIV.

Gap noted globally (IOM, 2013).

5. Interventions are needed to counter gender norms that discourage men from attending health services until they are extremely sick. Studies have shown that norms of masculinity prevent men from accessing ART until severely symptomatic.

Gap noted globally (IOM, 2013); and for example, in Africa (Druyts et al., 2013); Zimbabwe (Takarinda et al., 2015; Skovdal et al., 2011b); Uganda (Siu et al., 2012; Siu et al., 2013; Kanters et al., 2013); Zambia (Gari et al., 2014; Musheke et al., 2013a); Tanzania (Nyamhanga et al., 2013).

6. HIV surveillance systems do not count those over age fifty, particularly women, and treatment guidelines are missing for this age group. Currently, 4.2 million people live with HIV globally with increasing numbers of people over the age of 50 living with HIV. Few studies assess prevalence among women above age 50. Integration of treatments for common chronic diseases of old age will need to be integrated into HIV services.

Gap noted globally (UNAIDS, 2014a; Salamander Trust, 2014; Mills et al., 2012a); in Africa (Bendavid et al., 2012b; Negin et al., 2012); Zimbabwe (Negin et al., 2014 cited in Mahy et al., 2014).

7. Well-functioning laboratory systems are needed to measure viral load via PCR to assess effectiveness of treatment. However, adequate clinical results can also be cost-effective and meet patient needs. A study in sub-Saharan Africa found that more than half of test results for viral load were invalid or inaccurate. A review done in low and middle-income countries showed that lack of routine virologic monitoring in resource limited ART programs led to the development of cross-resistance to the NRTI component of second-line treatment. Even where virological monitoring is available and demonstrates virological failure, delayed switching of patients to alternative antiretroviral therapy regimens occurs.

Gap noted, for example, in globally in resource-limited settings (Phillips et al., 2011; Sawe and McIntyre, 2009); Sub-Saharan Africa and Africa (Greig et al., 2011; Ford et al., 2009b); India, Cameroon, Kenya, Malawi, Burkina Faso, South Africa, Nigeria and Senegal (Luca et al., 2010); Honduras (Murillo et al., 2010).

8. Interventions are needed to ensure that prisoners have ongoing access to HIV treatment and care. Studies found that prisoners lacked access to ARVs, or for those who accessed ARVs, faced the dangers of interrupted treatment due to prison transfers.

Gap noted, for example, in globally (Jurgens et al., 2007); Namibia (Legal Assistance Center AIDS Law Unit and University of Wyoming College of Law, 2008).

9. Additional outreach programs are needed for patients who miss ART clinic visits or fail to initiate treatment. A study showed that issues such as provider to patient ratios; adherence support programs; and needing transport from rural areas were associated with lower CD4 counts at initiation of ART. Other studies showed that patients were lost between initiation and maintenance sites. Another study found that one in five treatment-eligible HIV-positive individuals refused to initiate ART (Katz et al., 2011). Others who dropped out of treatment were using unproven remedies.

Gap noted, for example in Ethiopia, Kenya, Lesotho, Mozambique, Nigeria, Rwanda, South Africa and Tanzania (Nash et al., 2011); Zambia (Musheke et al., 2013b); South Africa (Katz et al., 2011; O'Conner et al., 2011; Bassett et al., 2010; Cornell et al., 2010); Botswana (Steele et al., 2011); Uganda (Nakigozi et al., 2011; Geng et al., 2012b); Latin America and the Caribbean (Crabtree-Ramirez et al., 2011).

10. Scale up of testing is needed with competent staff and labs in order to assess CD4 counts and link those who test HIV-positive to treatment. Studies are finding that in some countries, those who test HIV-positive are presenting with AIDS and that patients do not initiate ART despite eligibility. Those who test HIV-positive yet not eligible to receive antiretroviral therapy according to their national guidelines often did not remain in care until they were eligible for treatment.

Gap noted, for example, in Rwanda (Kayigamba et al., 2012); Uganda (Miiro et al., 2010; Chamie et al., 2012, Abstract); South Africa (Lessells et al., 2011; Losina et al., 2010; Kranzer et al., 2010; Larson et al., 2010; Naughton et al., 2011 ); China (Sullivan et al., 2010b); Ethiopia, Kenya, Malawi, Mozambique, and South Africa (Rosen and Fox, 2011); Ethiopia (Assefa et al., 2010).

11. Increased links are needed for women who access treatment to receive counseling concerning desired children and contraception. [See also Meeting the Sexual and Reproductive Health Needs of Women Living with HIV and Safe Motherhood and the Prevention of Vertical Transmission] A study with patients from multiple sites in sub-Saharan Africa found that within four years of follow up for 4,531 women, one-third experienced a pregnancy.

Gap noted, for example, in Sub-Saharan Africa (Myer et al., 2010).

12. Treatment programs need strategies to retain patients on treatment for countries affected by humanitarian emergencies (refugees of war, internally displaced people, etc.). Researchers found that patients faced challenges accessing treatment and continuing to stay on ARVs with floods, political crises and strikes.

Gap noted in Mozambique, South Africa and Zimbabwe (Veenstra et al., 2010).

13. Improvements are needed in health services, such as increased or flexible clinic hours, to reduce wait times and to encourage ART initiation. Interviews with people living with HIV eligible for ART who refused ART found that "the problem is…services….The process is so long" (Musheke et al., 2013a: 236). In addition, waiting to access ART jeopardizes livelihoods. Information systems that can track patients across sites can assist in tracking patients who need care.

Gap noted, for example, in Zambia (Musheke et al., 2012; Musheke et al., 2013a); Sub-Saharan Africa (Lahuerta et al., 2013); Malawi (MacPherson et al., 2012b); Vietnam (Nguyen et al., 2013).

14. Treatment programs that meet the needs of key populations such as sex workers and trans populations are needed. Recent WHO guidelines (WHO, 2014b) have noted that key populations living with HIV should have the same access to ART and ART management as other populations.

Gap noted, for example, in Dominican Republic (Donastorg et al., 2014); Latin America and the Caribbean (PAHO et al., 2014).

15. Improved support systems for lay or basic health workers are needed to facilitate effective care in areas where lay health care workers provide a significant proportion of HIV care. Systems need to be developed specifically for remuneration, retention, and adequate supervision.

Gap noted, for example, in Botswana (Ledikwe et al., 2013 cited in Bemelmans et al., 2014); Sub-Saharan Africa (Mwai et al., 2013 cited in Bemelmans et al., 2014); Mozambique (Rasschaert et al., 2014 cited in Bemelmans et al., 2014).

16. Research is needed on treating anemia, malnutrition and other dietary conditions as well as on optimum micronutrients for patients accessing ART and for patients prior to accessing treatment. [See Women and Girls]

17. Pregnant women living with HIV need timely access to CD4 count testing and results to access treatment. [See Antenatal Care - Treatment]

18. Adolescents living with HIV need information and services through adolescent-friendly HIV and contraception services. [See Increasing Access to Services]

Gap noted for South Africa (Evans et al., 2013).