Mother's mission to stop paediatric Aids

What would you do if it was 1985, you just learnt you are HIV-positive and, to make matters worse, you have obliviously infected the two people you love the most: your son and daughter? And then, there are no antiretroviral drugs for children.

Sounds hellish? Yet this is the situation Elizabeth Glaser, an American Aids activist and children’s rights advocate, credited with fighting for a drug formulation for children at a time when the world had only adult antiretroviral drugs found herself in.

Elizabeth contracted HIV after receiving an HIV-contaminated blood transfusion in 1981 while giving birth to her daughter. Lack of knowledge about her status also saw her give birth to a positive son in 1984.

After losing her daughter to Aids in 1988, Elizabeth vowed to see to it that her son survived, a commitment that saw her knock at the doors of Congress, catching the attention of lawmakers and in the process securing funding for paediatric Aids research.

FOUNDATION

Today, 30 years after Glaser co-founded the Elizabeth Glaser Paediatric Aids Foundation (EGPAF) in her kitchen, with friends Susan DeLaurentis and Susie Zeegen, her contribution to paediatric Aids management has not only given a dose of hope to her son, now 33 and leading a normal life, but to millions of children living with HIV across the world.

Interestingly, Glaser and her friends were having tequila when the idea came about and so it has become a tradition that visitors to the organisation’s Washington, DC headquarters be treated to a shot of tequila.

But shots of tequila is not all that the NGO has been all about. Thirty years on, the organisation has blossomed, touching so many lives on the way and saving many, to the point of becoming a global leader in paediatric Aids, driving the agenda in 12 countries.

In Kenya, it is 18 years old, and stakeholders in the health sector were not short of accolades for the tremendous job the organisation has been doing in the country, as they joined staff for a cocktail party to commemorate its 30 years of service to humanity at Sankara Hotel, Westlands.

Among those in attendance were Ministry of Health’s director of medical services Jackson Kioko, Parliament’s health Committee chairlady Sabina Chege, Homa Bay county women representative Gladys Wanga and county health executives for Turkana and Homa Bay counties.

INSPIRING MOMENT

At the cocktail, there was an awe-inspiring moment when Lydia Vera, a 21-year-old EGPAF-beneficiary from Homa Bay County, who is living with HIV, begun her speech by popping a pill.

“I am sorry to introduce myself this way, but it is time to take my medicine,” she said, drinking from a water bottle amid applause from the audience. It was 8pm, when she is required to take her drugs.

“When I tested positive in Class Four, it was just about the same time when the school curriculum says that Aids is a killer disease. Is it so? But I am here talking to you, more so because EGPAF gave me a shoulder to lean on,” she added.

Ms Vera, a health records and IT student at Kenya Medical Training College in Rachuonyo, who just returned from Amsterdam, Netherlands, where she attended the International Aids Science Conference, now advocates for the rights of young people living with Aids. Her message to them was clear: don’t fall back, work hard to overcome the challenges you’re facing.

STIGMA

One of the biggest challenge that EGPAF has identified with HIV-positive young people is adherence. Due to stigma, most of them choose to take their drugs in secrecy and when they can’t get the privacy, they abandon medication all together. This puts their bodies at a handicap when it comes to fighting off opportunistic infections as the ARVs are meant to suppress the virus.

For this reason, youths like Vera have been looped in and posted to various health facilities to help adolescents living with HIV navigate the healthcare system and, most importantly, offer peer counselling through psychological support groups.

This, EGPAF’s country director Dr Eliud Mwangi said, happens under a flagship project called Red Carpet. Just like the name suggests, young people in tens of facilities supported by the programme receive ‘VIP treatment’ in the hospitals, ensuring that they don’t miss their appointments.

For instance, in Homa Bay county at Mbita Sub-County Hospital, where I attended a fun-day event organised by EGPAF, under the shade of a tree right behind the hospital, a group young boys and girls danced to the rhythm of beats blaring from a music system next to the tree. They all seemed to be in high spirits despite the fact that they were all HIV-positive and, just like healthy teenagers, competed with each other on who can pull the best dance moves.

A couple of nurses and clinicians from this facility later joined in, creating a spectacular scene to watch. On another part of the playground, another group of adolescents played football while young girls skipped a rope on the sidelines.

Such is the scenario on a typical day when the teenagers meet for a fun-day event, not just here but across all the 20 facilities supported by EGPAF in a project funded by Children’s Investment Fund Foundation (CIFF).

These events take place during the school holidays and culminate in a sit-down session where adolescents are given presents such as mathematical sets, rulers, underwear and sanitary pads for girls as a reward for taking their drugs and managing to suppress the virus.

FINDING HAPPINESS

Shila Okecha, a clinician at Mbita Sub-County Hospital, says that, for some of the youngsters, this is the only place they find happiness because they go through a lot at home.

In Homa Bay alone, EGPAF has trained and recruited 1,000 healthcare workers to boost the work force in county health facilities. Two hundred others are posted in Turkana County.

This, Dr Mwangi says, is in a bid to ensure that these counties are adequately resourced to provide healthcare services. The Foundation is working in 12 counties so far.

Perhaps it is because of such efforts that Ms Sabina Chege told DN2 that the ministry of health needs to find a way to fund some of these projects locally, worried that, in the event donors withdrew their funding, “what has taken so many years to build will come tumbling down.”

HEALTH GOALS

Speaking at the event, Ms Chege, also said that the Committee is open to discussion on policies and Bills that can help the country achieve its health goals.

Since 2000, according to Dr Mwangi, EGPAF-Kenya has provided PMTCT services to more than 2 million women, in the process averting transmission of HIV to more than 18,400 babies.

Still, EGPAF has been working with the ministry of health to help in policy formulation, development of strategic plans, and rolling out of guidelines and strategic plans to health facilities and capacity-building of healthcare providers. These efforts, Dr Mwangi says, have borne fruits, helping the country reduce the rate of MTCT from 16 per cent to 8.3 per cent.

Coming from the county where the burden of HIV is highest in the country, Ms Gladys Wanga vowed to continue with her biannual mentorship programmes in partnership with EGPAF in a bit to fight stigma, and promised women here economic empowerment to help take care of children living with HIV.

But, despite the efforts, the battle to end paediatric Aids is far from over, and EGPAF acknowledges this little fact. According to UNAids, every day, over 400 children are newly infected with HIV because their families lack access to the health services they need to prevent transmission.

In Kenya, approximately 8,000 children per year are newly infected with HIV translating to 20 new infections per day.

It is therefore easy to see why there is need for concerted effort to fight the virus and no one understands this better than Dr Jackson Kioko, director of medical services in the Ministry of Health.

He said: “It will not be easy even for us to advance the universal healthcare agenda without reducing the burden of the chronic diseases, so we still have a lot to do.”

On his part, Dr Mwangi made a clarion call to all partners to join hands in order to slay the giant that is paediatric Aids.

“We are at a tipping point — we must seize this opportunity, or else risk losing all that we have gained. Together, we can create an Aids-free generation. We have the medicine and the technology. With the right investment now, we can end paediatric Aids.” he said.

Elizabeth Glaser’s promise to her own children is now EGPAF’s promise to all the children of the world: Together, we will do whatever it takes until no child has Aids.