From desperation to a new life
“I am 5 times grandma now,” says Denisa Augustinova. Still very young to have grandchildren of her own, the co-founder of MAGNA lives in Cambodia among children and teenagers with HIV/AIDS. She says she is happy to see “her children and grandchildren” progressing in their life, growing up and getting older. Some of the kids whom she met at the age of 5-7 years are now starting families and with the prevention of HIV transmission from mother to child, MAGNA makes sure the babies are not HIV positive.
When we look on the map of HIV/AIDS affected countries, the worst situation is in Africa. Why has MAGNA chosen Cambodia?
We didn’t choose Cambodia, Cambodia chose us. In 2002, when we started our operations there, the country was going through one of the worst HIV/AIDS pandemics in the world. More than 250 thousand people died of HIV/AIDS complications in a very short time. The pandemics turned many children into HIV positive orphans. The country needed some form of immediate intervention, bringing life saving ARV treatment for the affected people. As of today, with Cambodia’s population being around 14 million, the vast majority of people live on less than 2 USD a day. Cambodia ranks as one of the poorest countries in Asia and is struggling to restructure itself following its tumultuous past. Cambodia’s weak public health care system means that only one-fifth of the population has functioning health facility in their village. Moreover, the quality of health services is so poor that people are often forced to pay for private care. The situation with HIV/AIDS has improved since we arrived, as more people have access to proper health care. Now, it is our imperative to keep these people in the loop and do everything in our power to prevent new infections.
According to what you said, the situation is getting better, but still – many people need help. How exactly does the help look like? What does MAGNA do in the communities in Cambodia?
At the very beginning we started providing comprehensive help, especially treatment, for HIV positive orphans. Today MAGNA provides comprehensive healthcare for HIV positive patients, which includes psychosocial support and prevention of HIV transmission from mother to child (PTMC) programs. Furthermore, we make the antiretroviral treatment available for people in need, and we also provide the medical care, counselling and prevention and take care of orphans. Education and monitoring of the HIV infected patients at their homes also belong to our agenda. We were able to gradually apply the experience gained in Cambodia onto our projects in other countries, like Vietnam, Nicaragua, Democratic Republic of Congo and Kenya. Altogether, we have treated more than 5,000 patients with HIV/AIDS.
It takes a lot of time to manage all the activities you just mentioned. So I assume, these are your long term projects. When we look closer at this year, what was most important thing for MAGNA in its HIV/AIDS activities during 2016?
We started new project which is focusing on teenage patients with HIV/AIDS and their preparation for a transition into the adult treatment program. That includes individual therapeutic sessions, group sessions, and specialized education. We prepare the transition plan for every single young person individually. These young people need to understand how to take care of themselves, when to contact a doctor or a nurse, what to do if they don’t have enough medication etc. We work at four hospitals with nearly 1,500 patients. Starting with children from 10 years to up to 18 years in general, but we also have some young adult patients.
You named the model “Sequential transition”. Cambodian authorities have incorporated this model into their national health care guidelines. Please tell us more details about how it works?
The model is an intermediate step between the paediatric and adult care. It may include one or all of the following: a transition clinic, an adolescent-oriented service or a young adult service. Timing of the transition should not be determined by age alone, but by the preparedness of the young patient, which can be assessed by specific parameters, such as involvement in the disease management, mental maturity or independence. Adolescents living with HIV/AIDS need special attention due to the particularities involved in their care, such as safe sex measures, disclosure of HIV status to their partners, constant struggle with the possibility of severe illness and/or death, and exposure to discrimination and prejudice, which makes this population even more vulnerable to the usual challenges of this turning point in life.
Becoming a teenager is itself a difficulty for majority of young people. Furthermore, teenagers we are talking about are HIV/AIDS positive and many of them are orphans. It is a very difficult life situation… How are young Cambodians able to handle these changes?
It is indeed a very difficult life situation, that’s why they need our help. These young people often act in ways damaging to their health, for example refusing to take the pills. That is often an act of rebellion, or their way to express their autonomy. It can also be a response to feeling depressed or frustrated with taking pills every day. In contrast, the adolescents who are able to discuss their treatment from a medical perspective, for example understanding when and why the doctor changes their treatment regimen, are better prepared to live a healthy life. So, it is very important to begin early. According to our experience, the most effective time to begin the education about treatment is by age seven years. When necessary, we bring medical doctors from adult hospitals to meet the adolescent. We deal with our cases on individual basis. It is a very comprehensive mode of care. And very functional. We don’t have people leaving our program after the transition.
What do you want to achieve in your HIV/AIDS programs in next few years? Your plans, visions and challenges?
We have always had a vision, plan and new projects, activities and challenges. Mainly, we face shortage of funding for our HIV/AIDS programs. Honestly, it is a worldwide issue, not just for us in Cambodia. Despite of that fact, we have dozen of thousands of patients on ARVT medication and we need to keep them on that. We have many newly pregnant women every year who need to be tested, and thousands of adolescents whom we need to retain in our care. So at first we need to secure the proper funding, and we want to work more on the adolescents, focusing on mental health of our chronic patients and of course – we are trying to achieve elimination of HIV in Cambodia. Cambodia is one of two countries getting close to elimination of HIV/AIDS, the other is Rwanda, so hopefully in next four years we will achieve our plan!