Living with HIV: a fight to the death

Little Akib was in the last stages of advanced AIDS. A boy of 12, he looked six years old and was all skin and bones. He breathed his last on Sunday night. “He was fine this morning, talking and getting ready. I fed him as usual,” said his nani. She has now watched both her daughter and her grandson die of the deadly disease that is AIDS.

Akib was diagnosed almost three years ago. He wouldn't let it get him down though. Akib would come himself, every month or so, all the way from Gazipur where he lived with his grandmother, to collect his medicine from the hospital in Dhaka. “Whereas I should be the one bringing him for treatment, he would bring me, because he knows his way around the city and knows his letters,” said his grandmother. Akib lay beside her, unable to talk or move. His mother had died of AIDS two years ago and his father too has advanced AIDS.

Two months ago, he caught tuberculosis (TB) as well and this, in addition to the HIV virus, combined to weaken him substantially. For those with HIV, the immune system is suppressed, making it harder to fight off other infections. TB is responsible for the most deaths among people with HIV.

His counsellor at Ashar Alo Society (a local NGO), Azhar Hossain, says that Akib should have been hospitalised after he caught TB. A wilful child, however, Akib refused to stay in the hospital and would always go back to his grandmother. “We couldn't enforce that he took the TB or the antiretroviral (ARV) medication regularly at home. Try as we would, he just wouldn't stay at the hospital,” said Hossain.

Of the 11,700 adults and children presently living with HIV in Bangladesh (as of 2016), only 2,475 are on ARV therapy. Many remain unaware of their HIV-positive status. Within the last year, almost 1,000 died as a result of AIDS and new infections amounted to 1,500. The figures for this year will be released by the government today, December 1—World AIDS Day.

Stigma runs deep

There remains a silence around the virus and disease and stigma runs deep, even among the HIV-positive themselves as well as in the medical community.

Internalised stigma among those living with HIV/AIDS is not uncommon. A study by UNAIDS, Plan International, BRAC and others found that 68 percent of people living with HIV/AIDS (PLHA) felt ashamed and 54 percent felt guilty due to their HIV-positive status. Shame and guilt hinder their participation in social activities and lead to withdrawal from their communities.

More worryingly, it can prevent them from going to the hospital for treatment. The same study found that 17.1 percent of males and 16.3 percent of females surveyed would not visit the hospital even when they needed to—to collect their medicines or to avail treatment—as a result of internalised stigma.

Equally worrying is stigma from healthcare workers. PLHA are further discouraged from seeking treatment because of discrimination they face at hospitals and clinics. In a 2010 study which surveyed doctors, nurses, medical technicians and support staff, the results proved troubling. 47.9 percent of healthcare workers felt that those who have HIV/AIDS should not be allowed to mix freely with other people. A breakdown reveals that 21.9 percent of doctors, 48.1 percent of nurses and an overwhelming 83.3 percent of support staff felt this way. With direct caregivers displaying such attitudes, it is of little surprise that patients are discouraged from seeking out treatment.

Testing and treatment are free. As are ARV drugs, which are distributed by the government and, until recently, by a few non-government organisations. PLHAs, especially those diagnosed late, require these medicines every day, for the rest of their lives. They can lead healthy lives as long as they take ARV drugs to control the infection and prevent transmitting the virus to others.

The recent change in the distribution of the free ARV medication is a complication. Earlier, patients would get their drugs from NGOs and self-help groups, such as Ashar Alo Society, Mukto Akash Bangladesh, and Confidential Approach to AIDS Prevention (CAAP). These organisations have been working to provide counselling, psychosocial and medical support to PLHA across the country. Most of the staff themselves are people living with HIV.

Since October this year, these drugs are now being distributed from six major hospitals around the country, including Bangabandhu Sheikh Mujib Medical University (BSMMU) and the Infectious Diseases Hospital (IDH) in Dhaka. It however means that patients come from as far away as Comilla to get their supply of medicines once every two months.

Sherin Akter says her husband, a businessman, is threatening to stop going to the hospital to pick up his HIV medication as the process is time-consuming and a hassle. Sherin and her husband are both HIV-positive and were diagnosed 11 years ago.

The trouble is not just the usual troubles associated with accessing services at government hospitals. It is that the hospital environment itself is not hospitable for those with HIV/AIDS. Sherin, for example, went for a routine eye exam at BSMMU just last week but was forced to disclose her HIV-positive status to the doctor and nurse, crammed in with five other patients in the doctor's room.

Whether or not to disclose her HIV-positive status in light of the discriminatory attitudes towards PLHA is not a light dilemma. Sherin disclosed it, thinking that her doctor ought to know before examining her. “It was so embarrassing, the doctor and nurse just stared for a long time, dumbstruck as to what to do. Everyone else was also staring at me,” she said.

34-year-old Sherin has not yet informed her own family, except her younger sister, of her and her husband's HIV status. Her in-laws found out a few years ago when her husband was severely sick and had to be hospitalised. “It took them a while, but they soon came to terms with the situation,” she says. Their only daughter, 14, doesn't yet know. Sherin and her husband have discussed it, but feel that she should be a little older when she finds out that both her parents are HIV-positive. “We plan on telling her once she completes her HSC exams,” says Sherin.

Sherin and her husband have faced discriminatory attitudes at hospitals. They have been denied or reluctantly given treatment at least four times because hospitals and doctors are not prepared to treat HIV-positive patients. Remaining silent about their status in public life is a given here, but should they also have to suffer stigma in a place where they are supposed to receive care? 

Holistic care needed

As important as the medicine, is the counselling and psycho-social support required by PLHIV. Dr Saima Khan, UNAIDS country manager for Bangladesh, says “Four things are of essence—confidentiality, access to medicine and services, acceptance of their situation, and help in coping with their families.”

Though one of these functions has now shifted to the government, the others remain lacking. Even in the case of medication, they may very well be free but there are hidden costs involved. There are only six hospitals across the country giving out free medicines, testing and treatment. Patients come from afar and are sometimes forced to turn back that day with no medicine or treatment as doctors are not available at all times and there is no privacy for PLHA.

Given these challenges, the transition to a public distribution system should have been better thought out, feels Hafizuddin Munna, president of the PLHIV (persons living with HIV) network. The logic was that the public system is already equipped to handle hundreds of thousands of patients. Why shouldn't it be able to provide treatment to a few thousand?

Hafizuddin worries that the government will not be able to provide comprehensive care in relation to the unique challenges PLHA face. “Service providers are generally not trained to be sensitive. And people in our country are already reluctant to access government healthcare,” he says. The service used to be available locally, with NGOs often paying home visits. Now, patients have to makes trips to the hospital. “The service needs to be incentivised,” says Hafizuddin.

Dr Belal Hossain, deputy director and programme manager of the national AIDS/STS programme says however, “There has been no problem so far in service delivery. The system is very much the same as before, with PLHA being given two months' worth of medicine and confidentiality being maintained.” Dr Belal says that the shift from the NGOs to government had been anticipated earlier and the transition happened smoothly.

But as Akib's case illustrates, just providing medicines is not enough. For Akib, who lost his mother, more care was needed than just telling him to come pick up his medicines. He needed care that went beyond. If he had had that, maybe he wouldn't have left this world at the tender age of 12.