The heart-wrenching personal story of Loyce

Loyce Maturu from Zimbabwe visited the Netherlands on her way to Canada to address the Global Fund replenishment meeting in Montreal on 16 and 17 September 2016.

Loyce, who is 24 years old, was born with HIV and contracted TB as a child. Today, she is a Global Fund advocate.

On September 6th 2016, Loyce spoke with national policy makers at a press conference in the Hague, The Netherlands and visited KNCV Tuberculosis Foundation for an informal meeting with KNCV staff. The discussion revolved around the need to devote special attention to TB and HIV in adolescents, and highlight the life-saving of the work of the Global Fund in this regard.

Loyce has a heart-wrenching personal story to tell about what brought her to where she is now, a peer counselor and advocate for young people and adolescents living with TB and HIV.

“My life has been a long journey. In 2002, I lost my mother and brother in the same week. I was ten years old. My father had died in a car accident when I was a little baby.
After my mother died I was forced to change households a lot, I lived with different paternal relatives, and I also moved from Mutare to Harare where my paternal relatives lived.

In 2004, my auntie (father’s brother’s wife) took me to a clinic because I had started feeling sick. I was weak and coughing. I was diagnosed with HIV and TB. I was twelve years old.

Thanks to the support of the Global Fund to Zimbabwe I could get access to TB treatment at the clinic. This saved my life.

But, apart from the medical side, there were also the psychological effects of the disease. I felt frustration and depression because I had HIV. I cried, I was depressed and thought I was going to die. I was given massive counseling by an organization that gave me support: the Young Peoples Support group. In the support group I got to understand the diseases that I had, and we shared among ourselves how we wanted to realize our dreams for the future.

I was glad that I could receive the TB treatment that I needed. But I also experienced stigma during part of my life: in 2010, when I was living with another family member, I suffered verbal, emotional and physical abuse from some of my relatives. And so I tried to kill myself by taking all my drugs at once because I could not handle the situation. However I texted one of the staff at my organization Africaid Zvandiri. They took me to the hospital and I was admitted into care for two days. When I was discharged they gave me ongoing counseling. And that’s when l said to myself: if l am to find a purpose to live l want to come out in the open and share my story about growing up with HIV and I want to support my peers and encourage them to take their HIV treatment and become confident and be able to realize their dreams and hopes for the future.

Peer support against stigmatization
I decided that I wanted to come out in the open about living with the challenges that we face as adolescents. You face a lot of challenges if you have TB and HIV as an adolescent. You have a double burden of pills to take for the two diseases. And some of the challenges we face include stigma: in the family, in school, and also by health care workers at the clinic.

My organization Africaid Zvandiri supports community clinics by providing counseling for Adolescents and Young People living with HIV. Our peer counsellors, known as Community Adolescent Treatment Supporters (CATS), follow up on treatment defaulters. We train health care workers to be able to provide treatment and care services for adolescent and young people. I worked there as a peer counselor known as CATS for six years. As a peer counselor we give counsel about taking HIV and TB treatment, and we support caregivers as well as people with TB and HIV. Because the adolescents’ own parents have often died, the caregivers are often members of the extended family. They often don’t understand much about the disease treatment.

One way to address the stigmatization of adolescents with TB and HIV is to organize a caregivers workshop, and to get adolescents with to come to talk to the caregivers.

We need to influence families not to stigmatize. Even if a young person with TB is not HIV positive, he or she is still often stigmatized. If not in the home, then the stigmatization may take place at school. Also, young people who have lost their parents to disease often change families and schools, and then we need to start again to sensitize the caregivers and schools.

An example of stigmatization: a young person may have stunted growth, because they may have delayed to get treatment, and as a result people think they are younger. This happened to me. People often think I am younger than I am. So one of the side effects is a permanent physical look: often people can guess that you are HIV positive.

We also support community clinics by advising them on how to support a caregiver and how to support an adolescent.
And, in partnership with the Ministry of Health, we also train health care workers about dealing with people living with HIV.

For example, clinics open their doors at eight in the morning. People who have come to the clinic early for HIV treatment and are waiting for the clinic to open are told by the health care workers to “go that side for HIV treatment”. That is public stigmatization, and as a result adolescents and young people may stop going to the clinic. We may successfully sensitize families but if stigmatization at the clinic is still happening, then the problems still go on. Therefore, we need a campaign to raise awareness. People fear that this will also happen to them, and they lack adequate information about the diseases.

So, how can adolescents and young people’s groups help others? Well, what has really worked is adolescent peer to peer interventions on a daily basis. Peers understand each other better, they help each other in accepting their status, facing stigma and sharing experiences. Adolescents have issues around confidentiality and fear, and it is important to be available to listen to adolescents.

Peer counselors also go into schools to share information. If the peer counselors don’t want to tell their personal story then they can share general information about TB and HIV instead.

For peer to peer support it is good to also have a connection to the clinic, and that the clinic shares the addresses of children who need to be followed up so they don’t default treatment and develop drug resistance. The peer counselors should be able to make direct contact with the children to ask how they are doing and support them.

From peer support to advocacy
Last year I became an advocacy officer under Africaid Zvandiri, the organization l was working with in Zimbabwe. l became a Global Advocate for adolescents and young people on issues to do with HIV and TB, including advocacy to have a fully funded Global Fund during its 5th replenishment Conference through the Global Fund Advocates Network Speakers Bureau.

Adolescents and young people are a key priority at the Global Fund replenishment meeting.

One of the advocacy successes l have been involved in was influencing the Zimbabwe HIV and Testing Strategy guidelines, giving input around issues of adolescents and young people. Adolescents often only find out their HIV status when they develop TB symptoms and are then tested for TB. Or, alternatively, if adolescents go for male circumcision they are tested for TB and find out their status.

The HIV strategy in Zimbabwe is for the integration of services, creating a one-stop shop. The integration of services is important. There are still many challenges, for example of transportation, if people need to go to different clinics.

The organization l am working with is a community based organization that provides prevention, treatment and care service to children,adolescents and young people living with HIV aged 6-24 years. However, we also support our beneficiaries who are HIV positive and have TB.

One of my peers died of MDR-TB. He didn’t go for his daily injections and as a result the disease got worse. I think this happened because there was no link between the clinic and the hospital, and so important information was not exchanged. There is a need for focusing on both diseases together.

What could we do better for childhood TB and adolescent TB? Well, for example, a Y+ survey was held among adolescents and young people living with HIV. The survey highlighted issues such as of lack of confidentiality and a safe space for adolescents to share their issues and where they will be listened to. Stigma was one of the issues highlighted including the need of peer-led interventions.
Also, the teenagers are going through the difficult challenge of accepting their HIV status.
The smell of drugs also puts them off taking the drugs. If only it were possible to change the bad smell of the drugs! Other challenging issues are the size and duration of having to take the medication.

Within health care settings, adolescents need to be encouraged to take medication, and the family needs to be sensitized to support the teenagers in the taking of TB medication. It emerged from the survey that teenagers who take treatment every day may experience dizziness and loss of appetite.

In the poorer urban and rural areas we need to be ensure that people get proper food. A good diet is important but families are not always able to provide this. People with TB cannot go a day without eating.”

In the discussion that followed Loyce Maturu’s account, two main discussion topics came to the fore.

Counseling and support
Overall, the sentiment was that we need to address these soft, non-medical aspects of TB and HIV control. At the moment, patient group support is not ingrained in our thinking. In a sense, it’s the last mile; it’s the missing mile. We cannot simply only provide support through technical preparations and education. We cannot collect sputum for diagnosis and treatment, and then leave, closing the door behind us, as it were.

We need to identify what the obstacles to patient support are and how we can change them. Could we find space for this in our advisory work?

Prioritization is important. But we also need training in this aspect of the work. In general, in TB control health care services do not get paid for counseling, only for testing and treatment. In that regard there is a big cultural gap between HIV and TB control programs.

There are already some examples of how to do this in some countries. For example in Kyrgyzstan, KNCV’s Country Director is working on peer involvement and patient support groups.

Creating different interest groups can also be useful, for instance for adolescents or people with MDR-TB. The value of these groups is that patients get to know each other and can help each other. The group gives them a sense of belonging. Other activities may be included, such as education combined with music, theater or entertainment. This builds the participants’ self-confidence.

Advocacy and the Global Fund
The Global Fund Advocacy Network consists of all people who feel the Global Fund is effective and necessary. It is a growing network of advocates, currently consisting of 450 people, 250 organizations and 80 countries.

In advocacy, there is a need to understand policy issues, but also understand people. The Speakers Bureau tells their stories. The Speakers Bureau is what used to be called the Here I am Campaign, and consists of people affected by the diseases. For example, the story of Floyd from Zambia, which we featured prominently in the Netherlands Parliament a few years ago, was part of what was then called the Here I am Campaign.

Our message about the Global Fund is how great its impact is. It is so very important to financially support the Global Fund. This not just about ending TB, although that is our ambition in the long term, it is simply about turning the epidemics around: from growth to decline.

The Global Fund is saving a lot of lives. It is pooling our efforts. We need to make sure we keep on talking about this and step up the support for the Global Fund. Montreal is just the beginning. We need to keep working together.

KNCV has been fighting TB since its establishment in 1903. Over the past 120 years, the organization has acquired indispensable knowledge and experience in the field of effective TB prevention and care, resulting in pre-elimination in the Netherlands and significant contributions to global evidence generation, policy development and TB program implementation worldwide.

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