Though perhaps not immediately apparent, HIV/AIDS and food and nutrition security are becoming increasingly entwined in a vicious cycle, with food insecurity heightening receptiveness to HIV exposure and infection, and HIV/AIDS in turn amplifying vulnerability to

food insecurity. More and more, the HIV/AIDS epidemic is having a major impact on nutrition, food security, and agricultural production, especially for rural women. One key aspect of influence on HIV/AIDS relates to the ability of households and communities to ensure food and nutrition security. All dimensions of food security, availability, stability, access and use of food are affected where the prevalence of HIV/AIDS is high. Furthermore, good nutrition is very important for disease resistance and may improve the quality of life and effectiveness of medication of people living with HIV/AIDS (PLWHA), especially if they are taking anti-retroviral (ARV) medication. In fact, poor nutrition, or ingesting the medication without food, nullifies the benefits of the (pg. 2)drugs and may make the individual taking it even more ill. In many countries, HIV/AIDS medications in conjunction with special nutritional supplements are neither widely available nor affordable.

Click this link to download HBCA-Newsletter Volume 2 Issue 1

The high level of participation in the session’s formal meetings and side events by government representatives and civil society generated expectations that stakeholders were ready to pay attention and provide the essential resources, to move forward the situation of rural women and girls. Unfortunately, the 56^th CSW turned out to be a disappointment and a frustration to many. The session, which opened on February 27 was supposed to have ended on March 9, but lingering negotiations on the agreed conclusions forced the Commission to extend its work by one week.  According to Michelle Bachelet, Executive Director of UN Women, delegates could not be of the same opinion and defeat “a disappointing inability to reach consensus”. This is a detrimental blow to rural women and those advocating for their rights and economic empowerment.  Especially since the CSW is an ideal occasion for such advocacy, and provides a platform for rural women to speak directly and candidly to governments and other NGOs.

The representative of Norway spoke very eloquently when he used the term “moral hazard” in his closing statement. “The term moral hazard is often used when someone takes risky decisions, because they know that someone else will pay if the decision is wrong. I am sad to say, this is precisely what we have witnessed at this year’s meeting of the CSW. In statements and in speeches, and in negotiations, we have seen how moral values have been evoked to deprive women of their human rights, their opportunities, and ultimately for some, their life. This is the real moral hazard of our time!”

It is regrettable that in 2012, governments and civil society cannot agree on a common solution to concerns that affects one quarter of the world’s population and are a crucial economic key to improving food security, caring for HIV/AIDS patients and alleviating poverty in rural areas globally.

Norway’s representative went on to say, “This means we have to comprise. Many will have to let go of some traditional convictions, also when they are based on religious belief or culture. After all every country, every culture and every society undergo permanent change. That’s what’s called, development”.

It is the hope of the Huairou Commission that in the near future no obstacles will stand in the way to ensure that rural women all over the world receive the necessary support so that they can see development in their communities.

Through this new campaign, GROOTS Zimbabwe HBCA has been very active in facilitating training of caregivers in income generating projects (IGPs), such as piggery, poultry, peanut butter making, and gardening. Caregivers who have gone through GROOTS Zimbabwe nurturing, mentorship, and empowerment programs are now producing food for their own consumption, for the community, and to donate to orphans and elderly members of the community, thereby ensuring improved nutritional standards for HBCA patients.

Moreover, GROOTS Zimbabwe has launched various advocacy and lobbying programs targeting communities as well as community, traditional, and church leaders. They are advocating for irrigation schemes, small grain cropping, rural women prioritisation in agricultural inputs distribution, and land allocation to landless women including those with a passion for farming.

Since the inception of the IGPs, caregivers play a crucial role in the broadening of the micro-economic sectors. The Alliance facilitates exchange programs for various caregivers undertaking IGPs as a way of promoting information exchange, resilience, and best practice sharing.

Lastly, GROOTS Zimbabwe HBCA is in the process of training caregivers in resource mobilisation as a way of broadening rural women capital base, particularly those who are willing to forgo the now highly risky traditional seasonal farming to the more drought resistant small grain cropping, vegetable gardening, cattle ranching, piggery, poultry and goat rearing, among other projects.

One of the original aims for this research process was to contribute to a body of knowledge and build a platform of actors to gain concrete recognition for home-based caregivers. The research began with the base of established constituencies of home-based caregivers and their NGO partners. The partici- pating organizations were able to leverage their combined strength and the new knowledge and con- tacts generated through this research to take advantage of new and on-going policy and program de- velopments, such as AIDS strategic planning and the reformulation of primary health care plans.

Since the original publication of this report in July 2010, caregivers have made concrete gains. Here are a few of their achievements:

Members of the Kenya Home-based Care Alliance, facilitated by GROOTS Kenya, have participated in the NACC Kenya National AIDS Strategic Planning and implementation pro- cess. Caregivers in multiple regions of Kenya are now receiv- ing funding from Constituency and District AIDS Control Councils. In addition, caregivers are now participating in the Community Health Workers Interagency Coordinating Com- mittee to ensure its work reflects and builds upon the reality of communities.

In Uganda, caregivers working with UCOBAC have participated in the Health Sector Strategic Planning III, leading to the selection of committed home-based caregivers for newly formed Village Health Teams. Caregivers are also now participating in local agricultural committees and saving and credit cooperative societies, making it easier for funds and services to reach the poor in communities.

200 caregivers have been registered into the mutual health scheme and comprehensive home based care is being integrated into primary health piloted by the Home Based Care Alliance. When caregivers are involved in decision-making and development projects in this way, whole communities benefit as access to treatment, prevention, care and support is scaled up. These new kinds of partnerships are making global and national AIDS and health initiatives effective for communities, where they are meant to have their impact. They demonstrate the power of partnering with grassroots women’s organizations that are leading change in their communities.

Organizational formation varies based on local context, but generally groups are structured from the ground up, starting with the home-based care group/caregiver cluster (usually of about 20 people). Each of these groups nominate 1-3 representatives for a district or divisional Alliance, and moving up to the national level. In Uganda, a strong grassroots board of caregivers representing the various regions serves as the decision making and planning body for the Alliance.  In Malawi, current structure consists of a taskforce, which oversees three districts committees.  They in turn manage and coordinate the Alliance.  Benin, on the other hand, has at least 25 leaders of various types.  These include, local authorities, health center managers, and NGOs, which organize women providing home-based care.  Thus, in order for Lambassa ICA (the support NGO in Benin) to facilitate their work, a network of people living with HIV/AIDS has been created, which allows all members to participate in organized activities and engage in peer exchanges.

Solid networking and linkages are the strongholds and foundations for the Alliances, which allows for access to national and international information about health initiatives that is vital for Alliances to make an impact on advocacy.  GROOTS Kenya has made significant gains in advancing the position of home-based caregivers and has proven to be an effective model for other countries.  The International Women’s Communication Center (IWCC) in Nigeria serves as a connection between the international network of women’s rights and development organizations to the Nigerian women at the grassroots level.  They have established homecare, and organize annual women institute training centers in twelve local authorities in the country.  In Rwanda, the Rwandan Women’s Network (RWN) facilitates activities and provides capacity building workshops for people who are already working as caregivers.  Moreover, RWN’s partnership with the Department of International Development in the UK includes working with caregivers who provide care and support for genocide survivors who contracted HIV/AIDS as a result of sexual violence.  RWN’s caregivers also partner and collaborate with local NGOs and with local government, which helps caregivers to be regarded as advocates and allies within their respective communities.

HCBA’s all across are engaging in vital and ongoing activities that respond to the needs of the communities.  In Ethiopia, for example, a consultative workshop was held by SHAFON in February 2011 in Hawassa.  Additionally, communities on both a regional and international level participate in peer exchanges, which strengthens the Alliances and fosters advocacy by allowing for sharing of achievements and challenges.  Rwanda’s group has been active in working with local clinics and doctors to provide referrals and clinical trainings for caregivers.  Moreover, their partnership with USAID runs the Community HIV and AIDS Mobilization Project (CHAMP).  This project also collaborates with the Rwandan Ministry of Health to train community health workers.  Other groups, such as the Grassroots Sisterhood Foundation in Ghana, besides being committed in HIV/AIDS awareness advocacy and the Home-Based Care Alliance, activities also revolve around issues of domestic violence, early marriages, land, and property and inheritance rights.

The latest addition of the Home-Based Care Alliance Newsletter is hot off the presses and ready first things this year.  In this edition, check out the progress Alliances has made in influencing their governments to including caregivers in decision-making forums and in growing across 12 countries in Africa. Read the HBCA Newsletter Vol 1 Issue 4 here and start off the New Year right!

As the final issue for 2011, the newsletter consolidated information about the Alliance advocacy and organizing while also highlighting the story of one caregiver  taking leadership in her community giving both a global and personal perspective the to the work of the HBCA.  Also, from the update on the Huairou Commission ground-breaking research readers can see the importance of grassroots-driven research and the benefits of organizing caregivers into Alliances.

The Advance is an official program of The United Methodist Church through which United Methodist districts, local churches, organizations, individuals and families may choose to support particular, approved mission programs with their financial
gifts. Donors to the Advance are contributing to the advancement of the Home-Based Care Alliance by providing funds that go directly to grassroots home-based caregivers who collectively prioritize the money for home-based care kits, gloves, medicines, food for the sick, clothing, and books for orphans. This support allows the women to provide much needed health services working in the poorest and most marginalized communities without sacrificing their sparse income in service to their communities.

Milliag Mhlanga

My name is Milliah Mhlanga I am 62 years old. I live in Desai compound in Lusaka, Zambia.  I belong to the Zambia Homeless and Poor Peoples Federation (ZHPPF) HBC and I have been a Home based caregiver for eight years now. Although I was trained as a caregiver just eight years ago, I have been working as a caregiver since I was 30 years old. I used to offer my help voluntarily to people in my area, I used to assist those that had been discharged from hospital but were not yet strong enough to do household chores. My service did not go unnoticed by the community, thus when an opportunity came for palliative care training, I was selected to do the training. People saw how committed I was.Through my continued commitment, I was chosen as a leader. My community wanted others to learn from my example of commitment.  We are doing a lot in our community, but it is not recognized by the government. For this reason, when time came to form the Home Based Care Alliance I took the lead. I wanted our efforts to gain recognition. If I compare the situation 30 years ago when I started giving my services to the community, I can see now that the burden is becoming more. As home based care givers we have more to do now. Previously (30 years ago) I used to see an average of two people per month but now I have over 20 people on average to take care of every month. There are more people that the hospitals are discharging who still need care.  The nurses and doctors at the hospital never make follow ups on the patients they discharge; it is up to people like me to take care of them until they are strong enough.

One moment that inspired me was when we had a patient in our community who needed 24 hours care. I could not manage to do this alone. I informed other caregivers and we took turns to take care of her until she died. This made me realize that we needed to work together even though we were trained and reported to different organizations. Also as we worked we shared our experiences, from which I noticed that we were basically facing the same challenges. These challenges could only be addressed if we united and spoke with one big voice. As a caregiver I provide compressive care for the patient. A nurse will give medicine but will not take care of other needs such as washing the patients (especially those bedridden who cannot manage to walk to the restroom). Also as a caregiver I develop a relationship with the patient which nurses rarely do because they have shifts and may be assigned to a different ward. But as a caregiver the patient will see me every day and we have more time for discussion which helps build trust. They look to me not as a caregiver but as their grandmother, mother, sister or aunt. Such care is not provided for by government workers. As we try to form the HBC alliance we have to do a lot of movements to meet caregivers in other parts of the district, and this cost money.  We have to limit our movement depending on money available. I would have like it if the whole country was covered in the formation of an alliance but that is a challenge. If government and Non governmental organizations were to assist us, we could appreciate it and make an alliance that covers the whole country.

My vision for my community is that we should be able to have caregivers who are recognized by the government within our community. Non governmental organizations come and go but we shall always be with our government. If the government recognized us as workers, then we could have a continuation of HBC services in our community. My vision is also to see that we have viable income generating activities in our community that would provide funds to assist the clients in our community.  There are times when as a caregiver, I use my own funds to assist where there is a pressing need.

I have hope for the future because the few meetings we have had so far in planning to form the Alliance have shown me that we can do it. We have the confidence and we are united even though we are coming from different organizations.

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This story can be found in The Home-Based Care Alliance Newsletter Vol 1, Issue 2 August 2011.  This is issue also includes Global Advocacy Updates, Benin Caregivers Taking Lead, Overcoming Obstacles & Transforming Community, and more!

GROOTS International and the Huairou Commission are pleased to present Volume 1, Issue 2 of the quarterly Home-Based Care Alliance Newsletter. In this issue, caregivers from Home-Based Care Alliances in Benin, Zambia, Nigeria and Uganda share what drove them to begin caring for those in their communities and to organize Alliances to advocate for the priorities of those they care for and gain recognition from their governments.

Recognition by the government for their tireless work and contribution to their communities stood out as key to caregivers across their.  Caregivers from Benin working with ICA Lambassa share how they began providing home-based care when no one else was and organizing the caregivers in their communities to gain recognition.  A caregiver working with the Zambia  Homeless and Poor Peoples Federation and leader in the Zambia Home-Based Care Alliance who has provided home-based care for over half of her lifetime shares how her commitment has inspired others in her community to act and join her in calling for the government to recognize their work.   Two caregivers from the International Women’s Communication Center in Nigeria share how their experience receiving care while they were sick and bedridden inspired them to provide care for others also infected by HIV.   In Uganda, a caregiver from the Slum Women in Development shares her inspiration to take action in order for women in her community to have a strong voice to stand up against discrimination and to seek support from the government.  The newsletter also includes updates on global advocacy and news including caregivers from Uganda and Guatemala bringing the experiences of caregivers to the United Nations High Level Meeting on AIDS in New York City and the appointment of Violet Shivutse, a caregiver from Kenya, to the Global Coalition on Women and AIDS steering committee.

We welcome and encourage anyone who receives this to print and distribute widely to caregivers you are working with and to share electronically with your networks.

Read the Home-Based Care Alliance Newsletter here.

Congratulations to Violet Shivutse of GROOTS Kenya and the Kenya Home-Based Care Alliance for her nomination by the Global Coalition on Women and AIDS (GCWA) to represent the Huairou Commission on GCWA’s Steering Committee!  The Global Coalition on Women and AIDS is a worldwide alliance of civil society groups, networks of women living with HIV, women’s organizations, AIDS service organizations, and the United Nations system committed to strengthening AIDS programming for women and girls.

The nomination of Violet, the first and only grassroots home based caregiver to sit on the GCWA Steering Committee, is a significant accomplishment. It also marks a great opportunity for grassroots women to directly influence the women’s movement and increases access to global policy spaces. We congratulate GCWA for taking this important step in recognizing the importance of grassroots caregivers in the global AIDS response.

Violet’s aim on the GCWA Steering Committee is to ensure the voices and priorities of grassroots women responding to HIV in poor urban and rural communities across Africa are represented on the Steering Committee. She will also be able to influence the agenda, priorities and programs of the GCWA to reflect grassroots women’s realities. Through her, the voices of many grassroots women, providing home-based care to people living with HIV/AIDS will directly reach the global level.

Violet is a global leader whose leadership is deeply rooted in her own community. She is the founder and director of Shibuye Community Health Workers and a focal point leader in GROOTS Kenya. She is also a founder and leader in the Kenya Home-Based Care Alliance and one of the innovators of the Watch Dog Group, a partnership and accountability tool which is stopping and redressing land grabbing from widows and orphans across Kenya. In the Huairou Commission, she skillfully bridges her grassroots experience to global level policies and processes throughout many activities and events. We are excited for the opportunity she has been given to provide her expertise to the GCWA!