Pain is only the latest woe in John Bizimungu’s life. Rwandan by birth, he has lived in Kampala as a refugee since his family was slaughtered in the 1994 genocide. A cobbler, Bizimungu used to walk the streets asking people if he could fix their shoes.
Now, at 75 and on crutches, he sits at home hoping customers will drop by. But at least the searing pain from the cancer that has twisted his right foot is under control. “Oh! Grateful? I am so, so, so, so grateful for the morphine!” he said, waving his hands and rocking back in his chair. “Without it, I would be dead.”
Bizimungu’s morphine is an opioid, closely related to the painkillers now killing 60,000 Americans a year — a situation US President Donald Trump recently declared a “health emergency.”
The cobbler’s desperate need exemplifies a problem that deeply worries palliative care experts: how they can help the 25 million people who die in agony each year in poor and middle-income countries, and do so without risking an American-style overdose epidemic abroad or triggering opposition from Western legislators and philanthropists for whom “opioid” has become a dirty word.
The US delegation to the International Narcotics Control Board, a UN agency, “uses frightening war-on-drugs rhetoric,” said Meg O’Brien, founder of Treat the Pain, an advocacy group devoted to bringing palliative care to poor countries.
“That has a chilling effect on developing countries,” she said. “But it’s ridiculous — the US also has an obesity epidemic, but no one is proposing that we withhold food aid from South Sudan.”
Uganda has come up with an innovative solution.
Here, liquid morphine is produced by a private charity overseen by the government. And with doctors in short supply, the law lets even nurses prescribe morphine after specialised training.
About 11 per cent of Ugandans needing morphine get it. Inadequate as that is, it makes Uganda a standout not just in Africa, but in the world.
Yet there is very little opioid abuse here; alcohol, marijuana and khat are far bigger problems.
No relief in sight
A recent major study by The Lancet Commission on Global Access to Palliative Care and Pain Relief described a “broad and deep abyss” in access to painkillers between rich countries and poor ones.
The United States, the report said, produces or imports 31 times as much narcotic pain-relievers as it needs whether in legal or illegal form: morphine, hydrocodone, heroin, methadone, fentanyl and so on.
Haiti, by contrast, gets slightly less than 1 per cent of what it needs. And Nigeria, on a per-capita basis, gets only a quarter of what Haiti gets: 0.2 per cent of its need.
Even in big countries with domestic pharmaceutical industries, citizens still get shortchanged on pain relief, the report said. India and Indonesia, the second- and fourth-most populous countries on the planet, each supply only 4 per cent of their own needs. Russia is at 8 per cent. China, at 16 per cent, barely beats Uganda.
“Each country has its own barriers,” said Dr. James F. Cleary, director of pain and policy studies at the University of Wisconsin’s medical school and a member of the commission that produced the Lancet study.
In some countries, doctors get no palliative care training; in others, legislators or police oppose importing narcotics or deliberately make prescribing them difficult because of what the report deems “opiophobia”.
Pharmaceutical companies are uninterested in selling the generic morphine needed by poor countries because it is cheap and yields little profit.
Enough morphine to treat the entire world for end-of-life suffering would cost only $145 million a year, the Lancet report found.
Moreover, to treat all the children younger than 15 needing it — for severe burns, surgery, car accidents, pain from sickle cell disease and cancerous tumours that crush spinal cords and so on — would cost a mere $1 million.
“This is a pittance,” the authors wrote, “compared with the $100 billion a year the world’s governments spend on enforcing global prohibition of drug use.”
Some pharmaceutical companies do try to market patented time-release oxycodone and other highly profitable opioids in middle-income countries — but governments are often wary because of the epidemic of abuse that has swept the United States.
“You only have to see one Time magazine cover, and countries say, ‘This isn’t something we want’,” Cleary said.
Demand for pain relief “needs a champion in each country,” said Felicia Marie Knaul, a health economist at the University of Miami and lead author of the Lancet report.
“Most people don’t want to talk about pain and dying,” she said. “And what makes it different from cancer is that the people who need it most are right about to die, and then they can’t speak out.”
How Uganda succeeded
Uganda has had a national pain-relief policy since the mid-1990s. It succeeded for several reasons:
- The policy had outspoken local champions: Dr Anne Merriman, a former missionary nun who in 1993 founded Hospice Africa Uganda to care for the terminally ill; Rose Kiwanuka, the first nurse trained in palliative care in this country, who now heads the Palliative Care Association of Uganda; and Dr Jack Jagwe, a Health Ministry official who recognized the need.
(Like much of Africa, Uganda was in the grip of an Aids epidemic in 1993 that seemed unstoppable because antiretroviral drugs then cost $12,000 a year per patient. Many victims died screaming in pain from cryptococcal meningitis, Kaposi’s sarcoma or other opportunistic infections.)
- Uganda’s president, Yoweri Museveni, who has been in office since 1986, accepted the import of opioids after Jagwe endorsed them. Museveni’s response to Aids was also forward-thinking; when other leaders were denying their countries even had it, he pioneered “ABC prevention” - Abstain/Be Faithful/Use Condoms.
- And perhaps most important: The only opioid the government permits outside hospitals is pint bottles of morphine diluted in water. The drug is distributed free, at government expense, undercutting incentives for pharmaceutical companies to fight for market share.
The bottled morphine comes in two strengths: 0.5 gram or 5 grams per 500 millilitres. Even the weaker one dulls the pain suffered by Bizimungu, who is succumbing slowly to a form of Kaposi’s sarcoma that is not triggered by HIV.
The bottles are a simple and ingenious way to prevent addiction. Getting high would require drinking gallons of the bitter, slightly nauseating solution. Distilling enough morphine to inject would require boiling away gallons.
“You can drink a whole bottle and all you’d get is some nausea and constipation, and be sleepy,” said Rinty Kintu, Uganda coordinator at Treat the Pain.
At the Cancer Charity Foundation, a hospice for adults with cancer in Kampala, liquid morphine is easing the last days of John Kanakura, 55, whose colon cancer has spread to his liver.
“Since the cancer started about a year and a half ago, I have never really gotten relief,” said Kanakura, who raised three children on his small farm after his wife left. “It is like someone is cutting me with a knife.”
Kanakura’s daily bottle gives him about eight hours of pain relief, letting him get some sleep, said his son, Philip Mutabazi, 18.
Morphine is not prescribed nearly as freely in Uganda as opioids have been in the United States.
“The US’ addiction problem didn’t come out of cancer wards, it came out of orthopedics and dental,” O’Brien said. “Developing countries don’t give opioids for sprained ankles or wisdom tooth extractions.”
Early opposition
In a telephone interview from Scotland, Merriman, sometimes called Uganda’s “mother of palliative care”, described the early days of mixing morphine powder imported from Europe in buckets with water boiled on the kitchen stove.
Once cool, it was poured into empty mineral water bottles scrounged from tourist hotels.
She also recalled early opposition from older doctors who equated giving morphine to dying patients with euthanasia.
“You need someone to shout and scream and keep it going,” Merriman said.
Initially, donors like the Diana, Princess of Wales Memorial Fund and George Soros’ Open Society Institute helped, and the British and US governments provided money to help dying Aids patients. But those funds slowly dried up as drugs for Aids became more available.
Some hospitals began mixing their own morphine solutions. Then a morphine shortage occurred in 2010 after price squabbling between the Health Ministry and private wholesalers.
In 2011, the national drug warehouse was made the sole legal importer of morphine powder, and Hospice Africa was asked to mix solution for the whole country.
Treat the Pain stepped in to help. Its founder, O’Brien, a former epidemiologist at the Clinton Health Access Initiative, said she created the nonprofit after reading a 2007 New York Times series describing how millions died without pain relief and hearing an HIV doctor describe his patients screaming in pain.
The nonprofit, which is now part of the American Cancer Society, paid about $100,000 for machines to sterilise water, make plastic bottles, fill them and attach labels.
Further mechanisation is needed. On a recent visit to the operation, a pharmacist whisked powder and water together in what looked like a 40-gallon pasta pot, and medical students screwed caps onto the bottles.
The line can churn out 5,400 bottles a day, “and everything is automated except putting the caps on,” said Christopher Ntege, chief pharmacist. “That is a small challenge compared to what we faced before.”
Despite its imperfections, the Ugandan model inspires others.
“Many countries come here to learn how they should rewrite their laws and medical policies,” said Dr Emmanuel B.K. Luyirika, executive director of the African Palliative Care Association, an advocacy group. “This is a low-cost initiative that should be used everywhere.”
–New York Times News Service
