Judges’ Statements

Joy Phumaphi

Executive Secretary, African Leaders Malaria Alliance

The HIV and AIDS pandemic has changed. It is not what we were facing twenty or even ten years ago, when, as the grandmothers have told us, all one could do was sit hopelessly at the bedsides of family members, caring for them until their inevitable deaths. The rates of new infections in sub-Saharan Africa have been steadily decreasing. There’s been a dramatic increase in the the anti retroviral (ARV) treatment that can enable them to live much longer, healthier lives with the disease. While the statistical measures may vary, there is no dispute that there’s been a significant decrease in the number of deaths caused annually by HIV and AIDS. Over the last few years a global recognition that treatment is prevention has emerged, and a global consensus has been reached that universal access to treatment could be the solution for HIV and AIDS, if the political will and financial commitment is strong enough.

“Treatment” is now the magic word on the policy makers’ lips. But a serious response, one that genuinely respects the human right to health of every person living with HIV and AIDS, needs to pay close attention to who is and is not receiving treatment, and why. Despite the gains that we have seen, it remains true that AIDS is still the leading cause of death around the world for women between 15 and 49 years of age, and in sub-Saharan Africa almost 60% of the adults living with HIV are women. Studies have indeed shown that women living with HIV who are eligible to receive ARV treatment are—on average—more likely to obtain treatment than eligible men. However, the situations of different groups of women vary greatly, and the heightened attention that has been given to women of child bearing age, and the targeted testing and treatment that is available through maternal and child health services and antenatal clinics, does not extend to all women.

The grandmothers have told us today of how difficult it can be for them to get the testing and treatment they need. Violence and the fear of violence from their husbands and family members not only exposes grandmothers to infection, but can also intimidate them from getting tested. Once they do know their status, there can be a high price to be paid for disclosure, in the form of physical assault, divorce, abandonment, and homelessness. Seeking treatment from public hospitals and clinics can seem too dangerous for older women who know that their immediate safety depends on secrecy. Long distance travel for treatment may be too physically demanding for older women whose health is fragile.

Where there are costs associated with treatment, no matter how modest, grandmothers can be shut out—as we have heard today, their budgets are stretched to the breaking point trying to care for themselves and their grandchildren, and the first sacrifice they’re willing to consider is usually their own well-being. And while proper nutrition is absolutely essential to ensure that the treatment they do receive will be effective and lead to improved health, grandmothers frequently lack the income and the knowledge they need to maintain nutritious diets. The grandmothers who have become overwhelmed, isolated or depressed because of their situations can also have trouble finding the stamina to keep on track, and maintain their treatment over time.

As the grandmothers’ testimonies have shown us, stigma and discrimination are still definitely at the heart of the problem. Greater familiarity with the disease may have lessened the extremes of communities’ rejection and reactions, but people continue to have reason to fear and avoid the disclosure of their HIV status. Even where anti-discrimination laws are in place, employers will find ways to keep HIV positive people out of their workforces. Hospitals admit patients with HIV and AIDS, but insist on their segregation. People living with HIV continue to be seen as “those people”, not “part of us”, and denial is rampant among those who are diagnosed as positive. There’s still not enough acceptance and understanding of HIV and AIDS as a disease like any other. People continue to think of HIV as a death sentence, and in their fear and ignorance they reject the very life-saving, life-extending, testing and treatment they need.

I have mentioned that the global community is readying itself for a renewed and intensified focus on treatment, in light of the evidence proving that early and continuous treatment can significantly reduce the likelihood that an HIV positive person will infect others. In the absence of a vaccine, treatment appears to be the best available path to stop the spread of the virus, and end the pandemic. The case was made most recently by UNAIDS, in its July 2013 publication “Treatment 2015”. The new direction UNAIDS charts, which also reflects much of what can be found in PEPFAR’s 2012 “Blueprint for an AIDS-Free Generation”, is quite encouraging overall. They advise that countries should prioritize efforts to ensure that all people eligible for HIV treatment have access to it. They note that the people who have not yet received HIV testing and treatment belong to groups who are the most difficult to reach, so that new and additional measures will be needed to expand the scope of HIV-related healthcare. Treatment systems should therefore be adjusted to the needs and circumstances of the people that use them. Programmes should focus on the populations and settings in which the need for HIV treatment is most acute, and countries should establish targets for these “key” populations.

Social and legal impediments that prevent these populations from accessing testing and treatment should be removed. Because community engagement in service planning and delivery is recognized as particularly important for people who face challenges accessing services through mainstream health systems, greater healthcare investment is recommended at the community level. Furthermore, stronger leadership roles for members of key populations are advised in the design and operation of community services.

However, one note for concern, or at least for our care and watchfulness, is the manner in which the category of “key populations” is being addressed in the current discussions. There is a tendency to speak about the groups of people who have difficulty accessing treatment, and the groups of people whose infections are major contributors to the spread of the disease, as if they were one in the same when they clearly are not. Discrimination and marginalization are making it harder for both grandmothers and, say for example, men who have sex with men, to access healthcare. But positive grandmothers don’t play a statistically important role in the spread of HIV. The fundamental human rights principle that all people are entitled to treatment can’t be overshadowed or replaced by the tactical insight that treating certain populations is especially effective for slowing the spread of HIV and AIDS. Better treatment delivery to some populations— such as men who have sex with men, people who inject drugs, and sex workers—certainly can play a crucial role in reducing the spread of the disease. But we have to keep insisting that they deserve enhanced treatment efforts in their own right, as human beings who have been marginalized by healthcare systems through discrimination and inequality, not just because they are helpful tools or instruments for fighting AIDS. And, equally, we have to keep insisting on priority attention for all of the groups of people whose rights to health are being poorly met by healthcare systems—including the grandmothers—regardless of their “strategic” value.

We’re at an important crossroad in the response to the HIV and AIDS pandemic. On one hand, with the discovery of treatment’s effectiveness for prevention, the possibility of reaching zero new infections actually seems to be in reach. On the other hand, financial constraints and donor exhaustion make future funding uncertain, and are placing a premium on targeted, shorter term investments. It’s the right time to be seriously reflecting on what the HIV and AIDS response really needs to achieve. HIV and AIDS is a medical emergency only in the most immediate sense. At a deeper level it is a profound development challenge, and a human rights crisis for the people and communities infected and affected by the disease.

The endpoint of the response can’t simply be seen as zero new infections. Our goal must be the restored health and well-being of the people who live in countries hardest hit by HIV and AIDS, and the promise of decent futures they can work together to build. From this perspective, what happens to the grandmothers in sub- Saharan Africa matters hugely, and taking measures to ensure they receive proper treatment and continue to lead healthy, productive lives is an absolute priority. The grandmothers stepped in, with love, to shoulder the burden of children orphaned by AIDS when there was no other help to be found. Grandmothers are now supporting and caring for a significant percentage of the sub-continent’s next generation. Their continued well-being is necessary.

The following measures are required to protect and advance the human rights of grandmothers in the medical response to the HIV and AIDS pandemic:

First, a better information base is needed. General statistics and averages don’t tell us what we need to know in order to ensure that the rights of grandmothers to access healthcare are being respected. As efforts intensify to extend treatment to more people, we must insist, not only on gender disaggregated data about the recipients, but also on data that is disaggregated by age, family structure and income.

Grandmothers should be included as one of the target populations when countries develop their national plans to scale up access to HIV treatment, and grandmothers should be included on the advisory bodies that design and oversee the implementation of these plans.

Community level programmes must be developed that specifically address the challenges older women face in accessing treatment, and the best way to ensure this is to bring grandmothers and their representatives to the table from the very beginning, when programmes are being designed.

All out-of-pocket costs for HIV testing and treatment should be eliminated, so that financial constraints stop limiting access to treatment.

Grandmothers who are currently working on a volunteer basis with grassroots NGOs in their communities to provide care, counselling and support to people living with HIV should be paid for their labour.

As treatment is expanded, grandmothers should continue to be consulted and employed, as community healthcare workers and as expert patients, to help ensure that the follow-up and support services needed to keep older women in treatment are working effectively.

Grandmothers’ leadership is also needed in community-based efforts to broaden awareness about the availability of simple, easily tolerated treatment regimes, and user -friendly testing options, to bring more older women into treatment.

Policy frameworks should prohibit discrimination against people living with HIV and AIDS, and countries should take action to reduce discrimination in healthcare settings.

Anti-stigma campaigns should be undertaken, not just with the support of local community and religious leaders, but also with strong commitment from heads of State and other prominent national figures.

Finally, as global commitments are being made, and national goals and targets are being set to begin an intensified push to extend the reach of treatment, we must continuously insist on the human right to HIV and AIDS treatment for everyone.