Image © Guillermo DIAZ/AR0201602040

By Sofia Ezroni, ATD Fourth World activist in Boko Chasimba, Dar es Salaam, Tanzania, with the support of Hemed Star and Micol Bonapace, ATD Fourth World Volunteer Corps members. This article was written after the difficult experience Sofia, Hemed and Micol went through together, as Sofia tried to help her sick sister Peresia. Along the way these two sisters faced many injustices. It is hoped that this story will bring dignity to Peresia’s life and struggle.

My little sister

I would like to share the story of my little sister Peresia, who is now no longer with us. Peresia was 37 when I went to collect her from the Dar es Salaam bus station. She was so sick that I didn’t immediately recognize her. It was impossible to take her home by public transport, so I had no choice but to go to the nearest hospital with her.

From there, Peresia was transferred to another hospital where doctors discovered that she needed urgent surgery for an intestinal blockage. However, the operation could not take place until we made a payment of TZS 1,500,000 (around £520/600 €).

Getting into debt

The Tanzanian government does not provide free healthcare for its citizens and very few people have health insurance. This means most people are unable to afford proper medical treatment.

• In Peresia’s case, even though I had explained our financial situation to the social welfare department and made a written application to be exempted from payment, the hospital refused to carry out the operation in spite of the fact that it was classed as an emergency.

In desperation, I managed to obtain the number of a social worker and begged her to visit us on the ward. Having seen the situation for herself, she made arrangements for Peresia’s operation to go ahead, provided we settled the bill afterwards – something that is normally impossible in Tanzania. It was a huge relief, even though from that moment onwards I was heavily in debt.

Peresia was allowed home after the operation, but was in constant pain. She would wake in the night, screaming in agony, sometimes even disturbing our neighbours. We couldn’t afford the medication prescribed by the hospital, so we did our best with traditional medicines.

In the end we took her back to the hospital, where they realized that the operation had failed. The doctor who operated on her was just a trainee and had left a gaping hole through which excrement was leaking. She had to be operated on for a second time in order to correct his error, even though the hospital refused to admit responsibility for his negligence. At this point it was also discovered that Peresia had cancer and that the cancer had spread. This required a third operation.

• After the third operation, we were presented with a massive bill for TZS 3,800,000 (about £1315/ €1500). I repeatedly explained that it was impossible for us to pay such an amount as we had seven children between us and no regular income.

Hospital confinement and its consequences

On the day that Peresia was due to be discharged, the hospital secretary refused to let her leave until the bill was paid. So I went home alone and contacted a community leader who put me in touch with a local politician. Together, we visited Peresia and then met members of the hospital administration. In front of the politician they agreed to release her. But the following day nothing had changed: my sister was still locked up in the hospital. What’s more, the director of the hospital came to Peresia’s room and began to insult us: ‘Aren’t you ashamed of yourselves? You are young, you are capable of working. How can the hospital survive if nobody pays their bill?’ He was furious that I had dared to involve a politician in our case.

For five long months Peresia was prevented from leaving the hospital. Her children were affected because the hospital didn’t allow them to visit her, and there were many other consequences for the family. Because hospitals in Tanzania do not offer meals to their patients, I had to make a two-hour bus journey each day to deliver food to Peresia. This meant that my nine-year-old daughter had to stop attending school in order to take care of the younger ones, and I was eventually threatened with a fine of TZS 50,000 (about £18/€20) for her non-attendance. Sometimes, I even had to sleep at the hospital because I couldn’t afford the bus fare home, meaning that our children were forced to beg on the streets as I was not there to provide for them. Seeing my children do this was unbearable. Those times where I couldn’t afford to go home, I would walk around the hospital looking for a place to sleep. Often this was somewhere on the floor, and security would sometimes come and chase me – and others like me – away.

During that terrible five month period, Peresia suffered insults and general mistreatment from the staff and was completely exhausted by the situation. Sometimes she took it out on me, but I tried not to react because I knew how much she was suffering. Things came to a head one day at the hospital when I received a call from a neighbour to say that Peresia’s two-year-old son was missing. Peresia started swearing and shouting at the injustice of being so badly treated just for being in poverty. A doctor heard the commotion and came to calm her down. She said:

“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.”

This doctor already knew her situation and advised us to offer the hospital a small amount as a gesture of goodwill, suggesting that TZS 100,000 (about £35/€40) might be enough for her release. We couldn’t believe it! I rushed away to arrange a loan. Even though the interest was TZS 30,000, it would be worth it to get my sister home. I went to the hospital office to make the payment, but still they refused to let her leave.

Supported at last

One day, I was invited to an ATD Fourth World meeting by a neighbour who is a member. I seized the opportunity to vent my rage about my sister’s situation. But to my surprise I was treated with the utmost respect. I was encouraged to tell the whole story and people listened carefully from beginning to end. Afterwards, Hemed and Micol, ATD Fourth World Volunteer Corps members, asked me further questions, and a few days later they visited me at home. Finally, I no longer felt alone.

The day when Hemed and Micol accompanied me to the hospital is still engraved in my memory. Usually I would visit my sister alone, and on the way to the hospital I often had negative thoughts. But when we arrived together I had strong emotions towards the hospital staff. It was a very special day: not only for me, but for my sister too.

After speaking to the staff, Peresia told them, “I think Hemed and Micol 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 you as our friends, I know we will win our fight.” Then Hemed, Micol and I met with the director to ask for Peresia’s release. Once again he insisted that she could not leave until the debt was paid in full, repeating that the hospital needed funds to function. I replied that there are people from different backgrounds. Some can pay, others cannot.

Despite my explanations, the director was still only focused on money: “How much do you have here?” I replied that I had almost nothing. Finally, after many hours of negotiation, the director reduced the bill to TZS 500,000 (about £180/€200), payable in monthly instalments of TZS 30,000 (about £10.70/€12). If I agreed to this plan and handed over my ID card as a guarantee, my sister would be released.

I could hardly contain my joy that a solution had been found and ran to Peresia’s room to tell her the good news. At first she could hardly believe it, then exploded with happiness and rushed to thank the nurses and doctors who had supported her during those endless months. But when I went to hand over my ID card, the staff in the social services department were far from pleased that Peresia had been released. In fact, they even seemed angry to have lost the fight, which I found truly shocking. Surely their role is to support people in need, not to create difficulties for them?

I asked myself:

“I don’t have a lot of education, I’m not a doctor, but those people up there who have studied: how do they feel about my sister’s situation 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 treat people is unbearable and they are far from our reality. They are just there representing the institutions they work for. In reality, they do not accomplish their duty.

Back at home

On the bus ride home that night, Peresia and I talked about our hopes and dreams for the future. But not one of our wishes was ever realized.

Sadly Peresia’s health did not improve. She had been advised to go on a special diet, but we were unable to afford that type of food. She was also supposed to go back to the hospital for regular check-ups, which we had been promised would be free of charge. But the first time we went they made us pay, so we couldn’t afford to go again. In desperation, Peresia began to go out begging, but was too ashamed to tell me.

The cost of dignity

After some time, Peresia decided to return to our village. She told me, “You’ve gone through so much hardship and stress because of me, and you’ve accumulated so many debts that I want to give you some breathing space.” I was very sad, but couldn’t persuade her to change her mind.

Two months later, her condition deteriorated, and a doctor advised her to return to Dar es Salaam for further treatment. Because of the terrible experience she had been through, Peresia refused. Shortly afterwards she died at the age of 39.

Even though her sister has died, Sofia continues to pay off the debt. Still under pressure from the hospital, which uses her ID card as leverage, she was recently forced to borrow TZS 200,000 (about £70/€80) from neighbours by pledging the title to her small plot of land. And so the spiral of her late sister’s medical debt continues…