She dared take part in an HIV vaccine trial

By John Agaba

In 2006, Mariam Lubowa, then 22, took part in a trial of a vaccine that had stopped HIV in animals to see if it could work in human beings. It was a decision you could call ‘daring’.  It is no wonder her closest friend had advised her against participating in the exercise.

According to Lillian Mutengu, a communications expert from Makerere University Walter Reed Project (MUWRP), not many women take part in HIV vaccine trials.

“We always register low female participation.”

“In the heavily male-dominated society, fathers, husbands and other relatives want to block a daughter’s or a wife’s participation in any HIV research.”

There is also a misconception that in such trials, a live virus is introduced into your body to see if the trial vaccine will stop it. “This is not true,” insists Mutengu.

“No live virus is used.”

The communication expert says many women are discouraged from participating because the trial demands that they don’t get pregnant or breast-feed during the course of the study.

The study

She reveals that in the trial Lubowa participated in seven years ago, only 34 women turned up, compared to 110 men who volunteered – a ratio of 1:3 respectively.

A vaccine candidate known as Multiclade HIV-1 DNA Plasmid Vaccine VRCHIVDNA016-00-VP was being tested among HIV uninfected adult volunteers in East Africa to see how safe it was and what kind of immunity it could cause. The trial, which was conducted by MUWRP, ended in September 2007.

It was found safe and elicited good immune responses.

Lubowa said the trial went well. Six years down the road, the fairly trim and dark-skinned 29-year-old mother of two is happy to be among the heroes who gave themselves up to test a possible vaccine.

“I was curious. Many people don’t want to volunteer in vaccine trials,” she said.

“They are scared and think the white man is after injecting in them some HIV or a dangerous medicine. But it is six years now and nothing has happened to me.”

Higher incidence in Uganda

As the world marks World Aids Day on Sunday, HIV rate in Uganda continue to soar and are now at a prevalence of 7.3%. There is no vaccine yet but interventions like condoms, ARVs, Prevention of mother to child, and circumcision and others have been innovated.

Right now, there is no effective vaccine. But trials are going on in many countries to find an effective, safe and affordable vaccine.

During the Aids Vaccine 2013 Conference held in Barcelona, Spain, researchers left optimistic that an Aids vaccine was achievable.

One cause for such hope was the success of the RV 144 trial carried out in Thailand in 2009 that had earlier elicited an efficacy of 60% before dropping to 31.2% at the end of the study and could not be recommended in the prevention of HIV.

A follow-up trial building on the success of the RV 144, the Pox-Protein Public Private Partnership (P5) is in the pipeline. Trials will take place in southern Africa and Thailand.

“But we need more people like Mariam who are committed and can adhere to study guidelines to achieve this,” says Mutemgu.

Lubowa’s story

Born in 1984 in Mpigi district, Lubowa came to Kampala to work as a graphic designer and was staying in Makerere Kikoni, Zone C. She found a newspaper at her uncle’s place which had an advert calling for HIV-negative adults to volunteer in a trial at MUWRP.

“I don’t know why but I couldn’t get my mind off the advert.”

“The next day, I called my friend Becky about it and she seriously discouraged me saying it was risky. She said “how can you trust these white people? You don’t know what they are injecting in you”.”

But Lubowa was not dissuaded.  She decided not to tell her boyfriend and her parents.

“At MUWRP, I found other volunteers and a nurse explained what it meant participating in a vaccine trial. Her name was Vicky Tumusiime. She convinced us that they won’t inject in us the virus,” she says.

Nevertheless, she still requested for a one-on-one with the nurse the next day to get more information. She was taken through the purpose, the rules, and given reassurances that the vaccines were safe.

“I had never tested for HIV and I was scared. But my results came back negative and I signed a consent agreement. It was a point of no return.”

Volunteering

Lubowa went through challenges of participating without informing her boyfriend and best friend.

“I had to take my temperature and keep the diary I was given updated when he was not around. As for Becky, I told her four days later. She was so disappointed but it took me about a week to convince her that the vaccines were safe.

“She too finally agreed and enrolled for the trial. But she got pregnant two months later and had to be stopped. But her baby is healthy. Nothing has happened to him or the mother.”

Lubowa explains other reasons why women fear to participate.

“Some of them don’t know their HIV status and fear to test. Others don’t want to practice family planning. Others still fear the implications on their love life.”

There are lots of society misconceptions about vaccine trials, Lubowa advises.

Communities need sensitization. Trials should also be advertised widely in papers and TV programmes loved by women, like TV Soaps, she emphasizes. “I learnt of the trial from a newspaper. But how many potential women volunteers read newspapers?”

“The world needs an HIV vaccine. How shall we get one if you don’t participate?”