Speech of Jane Gondwe at the International meeting for peace “Bridges of Peace” in Bologna, at the conference entitled “Illness and Healing: the Value of Life”:
My name is Jane, I’m from Malawi and I’m the coordinator of one of Sant’Egidio’s many DREAM (Disease Relief through Excellent and Advanced Means) Program centers, which have been set up throughout my country and in 11 other African countries. The Program started in 2002 and at the beginning its aim was to prevent and treat AIDS and malnutrition. Today its activities include not only the treatment of infectious diseases but also of chronic diseases and screening for the early diagnosis of cancer. The treatment is free of charge for everyone. Currently DREAM is taking care of 500,000 sick people and it is estimated that the Program has reached over 3,000,000 people through various training courses, and nutritional, health and social support. It is a great health Program that started with the right to treatment, in particular for the poorest people. DREAM has become an opportunity, a chance to develop and to make a decisive change in many fields: health education, the rights of the individual, a new consciousness for women, the culture of work and the development of a civil society. It is a Program that has changed the history of AIDS in Africa and it changed my story, as it has changed that of thousands of sick African people. Today I am a woman with great dignity, who many sick people from my country refer to, ask for help, and I’m often invited to speak a international conferences on AIDS I Africa, but 15 years ago my life was very different.
In 2001 my husband was diagnosed with AIDS, unfortunately very late. The drugs for the treatment were not yet available in my country and in 2004 my husband died. Life got very hard for me and my 3 children, I was kicked out of the house we lived in, I also got HIV and I was fired from the school I taught at for this. In a short time, for my family and for society, I became someone with no name and no rights, just a sick outcast.
I was desperate, without any hope, I cried and wanted to die. I was completely in the dark and then one day a friend of mine told me that there was a therapy, that in Blantyre, my town, there was a center where I could get the therapy and care that I needed free of charge. This is how I met the Community of Sant’Egidio that took care of me through the DREAM Program. In Malawi, like in other countries in Africa, the first years of 2000, there were no antiretroviral drugs for treating AIDS, or at least only a very few and they had to be paid for. Finding out that you had AIDS was like a death sentence for most people and in fact many, many people died during those years.
DREAM introduced the antiretroviral drugs to Africa for everyone and it brought back the hope of life again. The treatment for sick people was good news and even sick people could have a future. Like the Good Samaritan in the Gospel, Sant’Egidio stopped in Africa next to sick people, it bandaged the wounds of the body and soul of so many people and gave them back their life.
Today I would like to thank Sant’Egidio because the treatment that was offered to me free of charge changed my story, that of my children and also that of my country. Today I’m in good health. Once I felt strong again I started studying again and I graduated with a university degree. Above all with my work, not only do I support my family but I have also become the voice of many sick people in my country and in Africa, who have no voice and no rights. The treatment and the closeness, the love I received from so many friends in the DREAM Program, completely cured me, not only my body, but in my sickness I discovered my dignity, I understood the value of my and everybody’s life. Everything that was impossible became possible. It was as though I had been born again. I don’t remember my first birth, but I will never forget my second birth, when I was given back my life again.
The many difficult times that I went through have made me a testimonial for other people. I want to freely give back what I received, by bringing with my voice, my strength and my love, the hope to be cured that changed my life, to people who are sick. My life today can speak of resurrection to many others.
I’ve often asked myself: why me ? I, who was not loved, who had been abandoned by my relatives and my friends, why me? I was considered a worthy person who had to be saved. My life was considered important, even though I hadn’t done anything to deserve it. I was loved in a concrete way by being given care and medicine but also so much hope. Being loved was the experience that brought me back to life and to a more beautiful and happier life than my first life. The care I received gave me a new way of judging other people, it gave me a new way of looking at so many people’s pain. I understood that life always has to be respected and protected, especially when it is weak and sick, in the belief that every human being is the image of God, and this is the fundamental dignity that cannot be taken away or undermined. The love I received produced a new feeling of compassion, which has been a liberating force for my life and for that of many other African women.
This is why I decided to dedicate my work to caring for so many mothers who have AIDS, in order to save many of their lives and also so their children can be born and grow up healthy.
To support them, not only with their many not only physical but also emotional problems, which are caused by the stigma and discrimination that they suffer from. Saving a mother’s life means saving a child but it also means saving a family because the women are the backbone of African society. But I’m also very proud that for the last few years no sick children have been born from seropositive mothers in our DREAM centers in Malawi. This is a victory of medicine and also a victory of love.
Over the last 15 years, with other sick women like myself, we have established the I DREAM association in many African countries. The main aim is to protect access to treatment as a human right that has to be respected regardless of race, religion, age or any social or economic condition and to be able to talk about AIDS without fear or shame. But we also want many other people to be cured through our work, not only people with AIDS but also the many people who have other diseases that are spreading through Africa, like chronic diseases and cancer. Giving people hope that they can be cured giving them hope for life. We go to their homes, the neighborhoods, the streets, the schools and the markets, to talk about how we were cured and we communicate hope. Together we women are changing the history of our countries and are building bridges that bring sick people close to those who are not sick. For many people, by now DREAM is a force of health and salvation.
In my country, every day many people are fighting against the physical suffering of their disease and at the same time they feel alone, often abandoned and they have no help. They experience a pain that is also because they have been isolated by society and because they are unable to deal with the most profound questions of life on their own. It is difficult to find real answers. Sometimes in our African societies the churches seem to be inattentive and far away from the people who look for comfort, relief and a cure. More and more often sick people think they can find the answer in magic, in rites, in traditional medicine, in false prophets and in the sects that take money and give bad advice: “Your disease is a punishment from God for all your sins, you just have to believe in me and my church… don’t take any medicine, I’ll heal you”. In the end many of them die because they don’t take their medicine anymore.
There are so many sick people, they don’t know they can be cured and both their souls and their body are wounded.
By bringing so many people back to life with medicine, DREAM has also brought to light and has changed these aspects of our culture, showing us that miracles can happen when we take care of ourselves. Moreover, the important health education work that I do every day, together with so many other people who are testimonials, is generating a new culture that is changing the fatalistic and magic idea of the disease. This change is freeing people from their feeling of unjustified guilt for a disease that is seen as a punishment for one’s sins, for one’s mistakes. In DREAM the meeting of sick people and the healthcare center is in fact a meeting of two cultures. Here sick people are offered healthcare that is completely different from the healthcare offered in the rest of the country. Today, thanks to this commitment, many people know that AIDS is not a death sentence, a divine punishment, but that it is a disease that can be cured, that they can receive treatment for it. Not only that; they are aware that the treatment free of charge is a right. Besides, over the years, the fact that the lifelong treatment for people with HIV has spread so much, the way people see the disease has begun to change profoundly and people are now becoming aware that it is a chronic pathology. This all represents a great change, also in terms of the collective mentality, of the social conscience in Malawi and in Africa in general. It is a cultural empowerment that is destined to change the health of the populations in a permanent and thorough way, which has paved the way for DREAM to be able treat many other diseases too.
In conclusion, I’d like to tell you that I was a woman with a death sentence who met DREAM and was cured and this brought about not only a profound physical and cultural change in my life and in that of many of my friends. The love that we have received has not been forgotten, it has started a movement of love. Through the experience of the disease I found and rediscovered my faith in a merciful God, close to me, who heals, and it was a real experience of reconciliation with God. This is why I cannot forget the resurrection that took place in my life and this is why I decided to work to cure other people, not only with my testimony but also with ceaseless prayers for everyone, so that many more miracles can happen.
During these years with the Community of Sant’Egidio I’ve understood that the important things come from the heart, but the heart has to be cultivated by reading the Gospel, with love for one another and with service for the weakest people in our society. There are so many wounds and diseases hidden in Africa, not only AIDS. Wounds in hearts, in the villages. Xenophobia is a wound, hating the elderly is a wound. There are wounds in families, wounds in politics; and these wounds become putrid, they get gangrene, these wounds kill not only one man but a whole family, a whole village, town, even a whole country. In Africa we are witnessing an increase in a competitive mentality, whose pressure on the life of individuals is extremely powerful. One has to concentrate on one’s own success. In this perspective, the weakest people despise the useless old people and the poor, the sick, the prisoners and this poisons society, making it often violent and inhumane. I cannot forget what I received without deserving it. It seems as though one has to pay a lot for the beautiful things in life. Whereas with DREAM life, being cured and health is not paid for. I didn’t pay for the most beautiful thing in my life, I was given it free of charge. This means that I have to live and give free of charge. For me, not forgetting this love that I received means multiplying it, making it grow, letting sick people get better, bringing joy to our sad society, where the poor are right to be sad but where the rich are sad too.
It may seem like a paradox but it is the real Christian paradox, that through my illness I found dignity, hope, the meaning of my life and also so much joy to share with other people. I understood that I am important, that each one of us is important before God, and that everyone can be a prophet, a prophet of happiness, and has to prophesy for the happiness of many.
The conference “The DREAM Program in Africa. The Mozambican case: from peace agreements to the fight against HIV” took place on 18 January at the Clinica Moncucco in Lugano.
The clinic counts amongst its partners the FAI foundation (Fondation Assistance Internationale), which has been supporting the DREAM Program in Mozambique and has provided its continuous help and contribution for almost a decade.
Speakers at the conference included Dr. Noorjeahn Magid, Clinical Director of the program in Mozambique, Dr. Laura Zagrebelsky, Italy’s representative for the Global Fund and Dr. Guidotti, Secretary General of the DREAM Program.
The FAI President and Vice-president, Dr. Respini and Dr. Mancini, expressed their enormous enthusiasm and passion for the program. They looked back on the work and collaboration over the years and the huge success and strength which characterized them, making the program a key example of the FAI foundation itself.
Dr. Noorjeah recalled the fight, the challenges and successes through her own story, arousing deep emotions and sympathy for both Mozambique and DREAM.
Dr. Zagrebelsky cited the program as being a true model of success and effectiveness for the Global Fund. She highlighted how this great collaboration helped spread the program throughout Mozambique, reaching many sick, which in turn contributed to a 40% increase of people receiving treatment.
The audience was moved by the touching images from the program and the voices of the activists, heard in a video, who received great admiration.
Towards the end of the conference a new agreement was signed which will allow DREAM to open a new center in Bangui, Central Africa.
The humane, scientific and spiritual adventure of the program continues with growing passion and new friends.
The ICASA conference is the main conference on AIDS in Africa. About 7,000 delegates participated in the conference this year in Abidjan, from 4 to 9 December. It was an occasion to take stock of the strategies for controlling the epidemic which, as is known, is especially rampant in Africa. Over the course of the conference the topics covered were the critical points of the 90-90-90 approach, HIV’s peculiarities amongst teens, and the new opportunities regarding drugs and prevention.
The DREAM program presented two projects, one from Malawi and one from Cameroon: a presentation on the screening of cervical cancer in Malawi, in which more than 3000 women participated over the course of two years; a poster showing DREAM’s results in Cameroon in terms of retention and virological success.
The conference was an occasion to meet and share experience. Many asked about DREAM, including Ivory Coast’s representatives from the Ministry of Health.
The second international workshop of the managers of the laboratories of the DREAM program in Africa concluded last week in Maputo. A group of biologists and lab technicians who manage the implementation of quality systems in eight of the largest laboratories of the DREAM program were present at the workshop. The purpose of the event, which was financed by the Italian Episcopal Conference, was yet another occasion to confront each other, share challenges and experiences and find common solutions to improve the efficiency and effectiveness of the laboratories.
Each manager presented evaluations of the activities of the past year for their own laboratory, paying particular attention to the integration with the national networks and the work carried out to increase the number of health centers reached, at the same time maintaining the quality of the services offered and the analytical response times. The managers of the quality systems were able to analyse and compare the progress achieved in terms of the implementation of the ISO15189 – 2012 regulation, gathering from each other’s experience advice, concrete examples and encouragement to continue their work. Everyone greatly benefitted from meeting and listening to each other again.
The workshop marked another milestone in building upon the collaboration and debates which began last year in Blantyre, carrying on over the course of the whole year through remote contact and communication. An important milestone in constituting a network of professionals who are in growing collaboration, who willingly exchange opinions and advice and who strengthen their own identity as a system of excellence, available not only to all the patients of the DREAM centers, but also to the many other public health centers. These centers are more and more a part of the DREAM laboratories, where they are guaranteed increasing quality and expertise.
DREAM was present at the International AIDS Society 2017 Conference in Paris.
The conference saw more than 6,000 professionals employed all over the world in the fight against the HIV infection. The results obtained with the treatment over the last few years were cause of great enthusiasm, with more than 50% of HIV-positive people all over the world following therapy.
It is a big leap forward in reaching the 90-90-90 goals set by UNAIDS for 2020.
In spite of the positive data, some areas are still lacking, particularly the scarce access to antiretroviral therapy in Africa and Eastern Europe, resistance to drugs (alarming especially in children), the Retention in Care and the treatment of the key population (teens, sex-workers, homosexuals, children).
Other important topics discussed were the co-infection of tuberculoses and hepatitises, the
mother-child prevention and the emergence of chronic aging diseases in HIV-positive patients.
DREAM contributed in two ways. A study conducted in Mozambique on advanced diagnostic algorithms for tuberculosis and a poster on retention in Malawi: both generated interest amongst researchers working in the sector.
Despite the encouraging data and the work towards spreading forms of treatment such as the one employed by DREAM, the fight against the HIV infection has its path littered with gaps as regarding to access to therapy in Sub-Saharan Africa and the enormous challenge of Retention in Care.
DREAM is on the field everyday fighting this battle side-by-side with many Africans.
On Friday 21 July a conference took place in Kinshasa in the PNLS room (National AIDS Control Program), called “Sharing the experience of the DREAM activists in the fight against HIV/AIDS”.
The idea originated from the growing interest of the National Program, responsible for taking charge of the HIV patients, towards the DREAM experience, which shows excellent retention statistics also in the DRC. For a few years now DREAM has also carried out an important awareness program in support of adherence to the treatment, especially in the suburban districts, thanks to the support from the activists. Therefore through an initiative of the PNLS all key actors of the sector were invited, particularly those responsible for the take charge of the psychosocial aspect and the community sector, the representatives of the networks of HIV-positive patients, and representatives from international organizations such as the CDC or WHO. Important also was the presence of institutions which collaborate with international funds such as Global Fund, PEPFAR and other NGOs such as MSF and ICAP. Various representatives from other health centers and maternities in the N’Sele health region (Kinshasa) were also present, who collaborate with the DREAM center in the area.
During the conference various topics were presented, such as the context in which the figure of the activist is born and operates in, and the main characteristics of what has by now become an important full-fledged professional. Furthermore the requirements were listed along with the training which DREAM carries out, as well as the various aspects which fall under the activist’s role and his/her relationship with the center and its personnel. Finally the data from the activities was presented, particularly from the last 2 years, when activists worked side by side with the medical team. The results, even though partial and necessarily still limited in time, showed the essential contribution of the activists in support of retention: in particular, aspects found to be especially problematic were highlighted, through various interventions, such as the take over of teens, reinforcing adherence, the active search for the “lost” patients who do not show up at the appointments, and the counseling and support for couples where only one individual is HIV-positive. Others explained the “parrainage” program towards teens, in which one closely supports a neighboring teen not adhering to treatment. It is a real challenge and a fight which focuses on involving the family, often grandparents or uncles which are also in a precarious situation, and gain the trust of the boy or girl.
At the same time it also means setting up support networks, such as the payment of school fees, which contributed to the majority of these teens adhering to treatment and finally suppressing the viral load.
The WHO representative Dr. Nicolas Nkiere Masheni lastly wished to highlight how one cannot fight against AIDS and Tuberculosis only through a medical point of view, but instead a global approach is required, involving the activists that may have an important role for the treatment’s success.
The conference ended with the sincere gratitude of the Director of the PNLS, Dr. Théodore Assani Salubezya, who highlighted the importance of the special effort that the DREAM Program makes in treating children and teens.
The activists, who were visiting Kinshasa for the first time, publicly took sides defending their work and their contribution and demonstrated yet again how not even an excellent program may reach quality goals if it doesn’t have a soul, if it is not willing to go that extra mile.
Thanks to its important results, the DREAM Program of the Community of Sant’Egidio is the example of how men and women, if freed by the stigma and given dignity through a qualifying service, are willing to help others and make a difference in the treatment of AIDS and change the society in which they live.