« I would like to share the story of my little sister Peresia, who is now no longer with us.
An urgent need for treatment
She was 37 when I went to fetch her at the bus station of Dar es Salaam, she was very sick and I did not recognize her immediately. It was hard to bring her home, especially by public transports, thus I was obliged to bring her to the nearest hospital.
The operation and its debts
From there, she was shifted from hospital to hospital where she stayed until the doctors said she needed a surgery as soon as possible at the intestines. However, a prior payment of 1,500,000 TZS (around 700 €) was required before the operation.
In Tanzania, the health policies oblige every citizen to incur the cost of treatments and the majority does not have health insurance and cannot afford the payment, so several people do not have effective access to health facilities.
Despite the urgency of the operation and my efforts to explain our economic situation to the social welfare through an official written request in order to be exempted from the payment, the hospital did not accept to operate my sister.
In front of this situation, a nurse gave to Peresia the number of a social welfare officer to find a solution. This person came to visit Peresia in the hospital. We explained the problem to her, so she could be operated and we were given the opportunity to pay afterwards - something that is normally impossible in Tanzania. From that moment on we started to get into debts.
Peresia should have been operated on before it came to this, it was already too late - why couldn't they have intervened earlier?
After the operation Peresia suffered a lot of pain: she would wake up at night screaming because of the pain. Sometimes our neighbors would also get up and ask what was going on. We tried to use traditional medicines because we could not afford the prescribed ones.
We came back to the hospital where they realized that the operation had failed. The doctor who operated her was an intern, still in training: they found out he had cut something he was not supposed to cut... and Peresia had a gaping hole through which excrement was coming out.
Peresia was operated for the second time in order to solve the mistake done during the first operation. However the doctors discovered that the cancer had spread, so they decided to operate on her a third time afterwards. I tried to raise my voice pointing out the responsibilities of the hospital, however it was not possible to question the system.
After the third operation, we were supposed to pay a total amount of 3,800,000 Tanzanian shillings (about '1,700). On evidence, I repeatedly explained my economic situation, showing that it was impossible for my sister and I to pay such a bill: we had seven children between us and no regular income.
Hospital confinement and its consequences
One day, after the operation, the doctor came to Peresia's room and told her she could go home, but the hospital secretary replied that Peresia was not allowed to leave the hospital until the bill was paid.
So that day I came home alone and went to a community leader who put me in touch with a local politician to whom I shared our story. Together we visited Peresia and went to meet the hospital administration which showed to be was very cooperative in front of the politician and they agreed to release her, but the day after my sister was still locked up in the hospital, nothing had happened.
A few days later, the director of the hospital and some people from the social services visited Peresia in her room and started to insult her: "Aren't you ashamed that you don't have the money to pay: you are young, you have arms to work, how can the hospital survive if everyone asks for favours like you?
They then gave me the same speech some days after in a way of punishing us for coming to the hospital with an elected representative.
Peresia ended up staying blocked in hospital for five long months. The children were also affected: during this time they could not see their mother because the hospital did not allow them to enter. This had many consequences for the family. The children were also stuck because I had to go to the hospital every day, a two-hour bus ride from our home, to bring food to Peresia . I had to ask the eldest sister, aged nine, to take care of the household, so this leaded her to stop to attend school. Once the school administration called me and asked me why my daughter was not going to school anymore. They told me that if my daughter did not come back regularly I would have to pay a penalty of 50,000 shillings.
Sometimes I was obliged to sleep at the hospital because I couldn't afford the transport fare to go back and forth every day, however, sometimes security would come and chase me and other people in the same situation away. I had to walk around the hospital to find a place to sleep, often somewhere on the floor.
I had to move from one place to another to find day-to-day work and support the whole family. Sometimes it was too difficult to try to sleep at the hospital, constantly chased by security, and at the same time leave our children alone at home, forced to beg in the neighbourhood. Seeing my children become beggars was really unbearable.
During the five months in hospital, some of the doctors pestered Peresia. "What are you still doing here?" they used to ask her. Sometimes my sister called me to tell me that they were mistreating her, they could ask her to leave a bed to sleep on the floor, they moved her from one room to another in very bad conditions just to punish her. Sometimes I was not able to visit her because I didn't have enough money. This created problems between me and her because she was exhausted by the situation, she would attack me. I tried to keep calm because I understood that she was suffering.
One day when I was allowed to sleep in the hospital with my sister, I received a call from the neighbours to say that Ibu, Peresia's 2-year-old son, had not returned home. Peresia started swearing and shouting in the hospital corridor that we were in this situation because we were poor. A doctor heard the shouting and came to us. Peresia took all the documents and addressed him: "We have done everything we could do and we are still not treated as human beings, we have shown all the documents proving that we cannot pay. The doctor nodded: "I understand you, but the problem is the hospital management. Can you at least pay a small share to show them your goodwill?” Peresia replied, "If I could pay, I would have done so already. I don't want to stay here, but you have seen my papers, it is impossible for us to pay even a small amount."
The next day another doctor asked me, "Can you at least pay 100,000 shillings so we can let Peresia out?” I couldn't believe it, Peresia was told the same. This doctor seemed to be in a hurry to get the money and he wanted me to send it through the phone . I didn't trust him, I didn't know what to do. I decided to send the money to Peresia's room mate and ask my sister to withdraw the amount and give it to the doctor who seemed ashamed and disturbed by the situation. The doctor said to go and pay the administration. I got a receipt, however I was very disappointed to see that nothing changed, Peresia was still blocked in the hospital while I had taken a loan of 100,000 shillings with 30,000 shillings interest to pay back.
One day, I was invited to a meeting of ATD Fourth World members by a neighbour who is a member of this Movement. I seized this occasion to vent my rage about my sister's situation in front of everyone. I quickly realised that the people around respected me, that they let me speak and listened to me until the end, and after the meeting Hemed and Micol came to ask me questions in order to understand my situation, and then they came to visit me at my place a few days later. From then on, I started a new path, I was finally not alone anymore.
The day we went to visit the hospital with Hemed and Micol is still engraved in my memory. I was used to visiting my sister alone and during the trip to the hospital I was used to have negative thoughts in my head, but when we arrived at the hospital together I felt very strong towards the hospital staff, for me it was a very special day, and not only for me, for my sister too. When we arrived in Peresia's room, she asked me "Who are these people?" and after explaining, Peresia went on to say "I think they are real friends because they are not only going to try to solve the situation, but they have also taken time to visit me. With them, we will win our fight."
So together we met with the director of the hospital to explain my family's situation again and ask for their release. The hospital had found us guilty because of our inability to pay the debt. The director insisted that Peresia could not be allowed to leave the hospital until the debt was paid, repeating again that the hospital had to be funded to function.
I replied that there are people from different backgrounds: some can pay; others cannot, as we have shown many times. Despite my explanations, the director was still only focused on the financial question: "How much do you have here? I replied that I had almost nothing. After a long day of negotiations, late in the evening, the director agreed to let my sister out if I agreed to pay a total amount of 500,000 shillings with a monthly payment schedule of 30,000 shillings.
I couldn't contain my joy after receiving the news and quickly ran to Peresia's room to ask her to get ready. Peresia could hardly believe the news, but once she realised that her long-awaited release was real, she became an explosion of joy and went over to greet the nurses and doctors who had supported her during those endless five months.
We went to the hospital's social services as they asked me to leave my ID card as a guarantee that I would pay it back. They didn't share the same joy as I did, they seemed to be distraught that they had lost this fight.
I asked myself: "I'm not very educated, I'm not a doctor, but those people up there, who have studied, how do they feel about situations like my sister's and many other people locked up in the hospital? These institutions are sometimes the reason for the problems they themselves create. If I have had so many difficulties, it is because of these institutions and their pitiful decisions.
Social services are supposed to support people in need, but sometimes they bring them more problems: the way they welcome people is unbearable, they are far from our reality, they are just there in the name of the institution they represent, but in fact they do not accomplish their job.
Life outside the hospital was always challenging:
On the bus ride home, late that night, Peresia and I discussed our desires and dreams for the future, however none of these plans for the future could be realised.
Peresia continued to be ill, the doctor had advised her to go on a special diet, but it was not possible to follow it as we could not afford the type of food suggested, so she continued to eat certain foods that she was not supposed to.
Peresia also came to beg in the neighbourhood, hiding it from me out of shame.
We could not reach the follow-up consultations at the hospital because of the cost of transport and the visit, even though the hospital had promised that the follow-up would be free. The first time we went there, they asked us to pay for the consultation, so we decided to stop going to the medical visits.
The cost of dignity
After some time, Peresia decided to leave and stay in our family village. I was sad to see Peresia return to the village. She said to me, "You have gone through a lot of difficulties because of me, you have accumulated a lot of debts because of this situation, full of stress, I really want to give you some breathing space”.
I insisted but it was not enough to convince her to stay, she finally decided to leave. Two months later, her health situation deteriorated, she went to see a doctor who advised her to return to a hospital in Dar es Salaam, but following her terrible past experience, Peresia refused and died at the age of 39... "
Despite her sister's death, Sofia continues to pay off the debt she incurred with the hospital still holding her identity card as collateral. Still under pressure, in order to pay a due date, she had to borrow 200,000 shillings from neighbours by pledging the title to her small plot of land. For Sofia, the spiral of her late sister's medical debt continues.