"Pharmaceutical companies have to be really challenged to reduce their prices," says nun running Kenyan orphanage for HIV-positive children
NAIROBI (AlertNet) – When HIV-positive Sammy, aged 13, became resistant to all of the antiretroviral (ARV) medication available in Kenya he had a brain stroke.
“For eight months that boy just wasted away,” said Sister Mary Owens, an Irish nun who runs Nyumbani, an orphanage for HIV-positive children, just outside Nairobi.
“You can imagine our children coming home from school every day, going in to say hello to Sammy. And what was going on in their hearts? Is this going to happen to me?”
Sammy died in September 2008.
His death was a “wake-up call” for the orphanage, Owens said.
The third-line ARVs that Sammy needed cost about $25,000 a year because they are only available from major pharmaceutical companies.
HIV patients gradually have to move from first- to second- to third-line treatment as the virus develops resistance to medication.
Six months ago, Nyumbani managed to get healthcare companies Johnson and Johnson and Merck to donate third-line drugs to two of its 114 orphans.
But it has another 40 children in the orphanage taking second-line ARVs who will eventually need third-line drugs, and many more in its village and community programmes.
“Our experience is that children develop resistance faster than adults because their little bodies are growing all the time,” said Owens.
“We need to get access, in Kenya and in the developing world, to third-line. The problem is the cost. The pharmaceutical companies have to be really challenged to reduce their prices.”
PRICES PLUMMETED
Over the last decade, prices for first-line ARVs have plummeted from over $10,000 a year to under $70 with the manufacture of generics, mainly in India.
As a result, the number of people accessing the drugs has soared. Around 47 percent of the 14.2 million people eligible for treatment in low- and middle-income countries are now receiving it, according to UNAIDS.
“Up until 2003, we were losing a child nearly every month,” said Protus Lumiti, Nyumbani’s general manager, surveying a small graveyard of crosses hidden behind the orphanage’s kindergarten.
Before the advent of affordable drugs, HIV was a death sentence.
“All we could do was give quality care to the children for the short life that they would have, maybe three to five years,” said Owen.
Many of Nyumbani’s children died when they were just a few months old, abandoned by their mothers by the roadside or in hospital.
JUST LIKE ANY OTHER CHILD
Today, it is a different story. Metres away from the graveyard, healthy children played football in the midday sun.
Nyumbani has not lost a child since Sammy died.
All of the children who need first- and second-line ARVs are receiving them, thanks to cheap generics.
The home’s oldest orphan is now 29 years old, living and working independently in Nairobi.
“There’s no known limit to their lifespan provided conditions are maintained,” said Owens.
“The world is ahead of them. They can dream their dreams, just like any other child.”
The price of second-line drugs has fallen from $1,500 to $450 over the last four years, largely due to a large purchase guarantee from UNITAID, an innovative funding mechanism aimed at increasing access to treatment of HIV/AIDS, malaria and tuberculosis in poor countries.
“This gave them the incentive to produce higher volumes of the medicines and therefore bring the price down,” said Daniela Bagozzi, UNITAID’s spokeswoman.
UNITAID, which is largely funded by a levy on airline tickets, provides 77 percent of second-line ARVs in the developing world.
By guaranteeing markets to generic manufacturers, it has also spearheaded the production of pediatric drugs, increasing the number of children on ARVs from 30,000 in 2006 to 400,000.
PATENT RIGHTS
But Indian generic manufacturers cannot waive the patent on drugs invented after 2005 – such as third-line ARVs – because of the World Trade Organization’s Trade-Related Aspects of Intellectual Property Rights (TRIPs) agreement, which protects pharmaceutical industries’ patent rights for around 20 years.
Campaigners want big pharmaceutical companies to join the Medicines Patent Pool, set up by UNITAID in 2010.
Until now, they have struck voluntary licensing deals, allowing generic copies of HIV products on a case-by-case basis.
The patent pool aims to provide a "one-stop shop" for generic companies to access patents for a small royalty, enabling the latest drugs to become affordable to patients in the developing world.
In July, Gilead Sciences, the leading maker of HIV drugs, became the first major pharmaceutical manufacturer to join the pool.
“We need to find an agreement with the companies who are producing these drugs to invite them to join the patent pool that can allow the generic companies to produce that third-line therapy,” said Philippe Duneton, UNITAID’s deputy executive secretary.
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