Inside Oulanyah’s battle with cancer

Family, friends and workmates have eulogised him as a fighter, and an unrelenting character who lived life on the roll.

But the fun-loving and strong will belied a terminal disease --- a recurrent lymphoma cancer --- that for two years aggressively ate the body of Jacob Oulanyah, former Speaker of the 11th Parliament.

A lot of this battle happened in secrecy. He awed onlookers and parliamentary staff when he cruised, including to the House, on his gigantic BMW motorbike.

Oulanyah, who died shy of his 57th birthday, had fervently chased his political dreams and retained his Omoro County Member of Parliament seat, won the ruling National Resistance Movement (NRM) party’s national vice chairman for northern Uganda slot and, last May, was voted Speaker of the 11th Parliament, making him Uganda’s third-most important citizen.

READ: Revealed: The four people who flew with Oulanyah to Seattle

For the tough political fights and huge electoral investments, the sudden deterioration in Oulanyah’s health, which culminated in his demise last month in the United States, was an anticlimax that took majority Ugandans by surprise, leading to widespread rumours about the killer illness.

However, one man who walked with Oulanyah behind the scenes on his journey of failing health over the past two years was Dr Jackson Orem, the director of Uganda Cancer Institute.

In a speech at yesterday’s state funeral for the former speaker at Kololo Ceremonial Grounds in Kampala, the oncologist, to the rapt attention of mourners, made public hitherto unreported details of Oulanyah’s on-and-off illness, which started in 2019.

The trigger was a mass, or lump, discovered on the left side of his neck, which to his shock was confirmed cancerous.

A separate re-examination conducted privately at a German hospital found that Oulanyah was battling stage-three of lymphoma cancer.

The lymphatic system comprises the body’s defence network and so, according to Dr Orem, doctors were hopeful the then Omoro County legislator would recover if treatment commenced promptly.

“It [the cancer spread] had gone far, but not yet too far and [could] still be treated. He opted for the treatment privately, and within weeks, it was started,” he said.

This required Oulanyah to stay in Germany for five months in order to receive six cycles of chemotherapy.

In October 2019, the time Oulanyah discovered his illness, he was serving as Deputy Speaker and Ms Rebecca Kadaga was the substantive Speaker.

In her eulogy during the special Parliamentary sitting on Tuesday,  Ms Kadaga said Oulanyah was unavailable for work and regularly flew to Germany, but concealed the purpose of the travels.

As a result, it appeared he either didn’t want to work or was being insubordinate, if not both, leading to clashes between him and Ms Kadaga, a fall-out that boiled over to factionalise Parliament staff and, on occasion, paralysed House business as both principals would be out of the country at the same time.

Revelations that Oulanyah would be abroad seeking treatment for a terminal illness, Ms Kadaga said, sadly meant she learnt of the fact posthumously, and she forgave him.

At Kololo, Dr Orem said Oulanyah returned from Germany in February 2020, just as then nascent Covid pandemic was forcing countries to shut frontiers.

Consequently, he was unable to return to Europe, yet he had only received two cycles of chemotherapy.

As a stop-gap measure, a team of specialists at Uganda Cancer Institute started Oulanyah on treatment, and he completed the remaining four cycles.

The Covid-induced international airspace closures lasted longer, inordinately delaying the return of the then deputy Speaker to Germany for review and re-staging of the cancer, and to establish the effectiveness of Uganda treatment.

“The person who stages the [cancer] patient knows better and we had planned that we go back to Germany, because those are the people who do the re-staging. We thought by time the Covid-19 lockdown would be over. Unfortunately, that was not to be and Germany was closed and we could not go [for Oulanyah’s review],” Dr Orem said.

In May 2020, after two extra cycles of chemotherapy at Uganda Cancer Institute, Oulanyah was in remission, a medical term to mean that the cancer could not, at the time, be seen in his body.

And the political season, the start of preparations for the January 2021 elections, were underway. Oulanyah had his eyes set on retaining the Omoro County parliamentary seat as a springboard for the future speakership race.

So, specialists, according to Dr Orem, decided to focus on the next level of his treatment, which is the STEM Cell transplant. “I told him (Oulanyah that) I was available anytime to start [him on the treatment]. Unfortunately, he got rather occupied with other duties including duties of Parliament, and because of that it took us time before we met. The next time he called me was six months later,” he said.

The lapse in time meant it was November 2020 when campaigns for vote that was only two months away had hit a crescendo.

Oulanyah informed Dr Orem that the mass on the left side of his neck had resurfaced. Put another way, the cancer was back, and a new phase of treatment had to start.

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By April and May 2021, after Oulanyah had won both the MP seat and Speakership, he was positively responding to medication, and showing “remarkable improvement”.

With both political wins, duty called him, fast and furious. He had been sworn in as Speaker of the 11th Parliament on May 24, and he pressed with acceleration his commitment to turn the House of people’s representatives around to be people-centred and of high-quality debate.

Thus, he plunged headlong into work, skipping treatment and exhausting a failing body.

Before long, he disappeared from public view, sparking initial claims that he was likely down with Covid.

But no. Instead, he had undergone a procedure which created complications that necessitated him to be airlifted to Dubai, in the United Arab Emirates, for specialised surgery.

“His care got complicated, that meant a completely different situation on our hands…in that situation, and the cancer issue takes a back seat, because the emergency was saving him from the complication of the surgery,” Dr Orem recounted.

Oulanyah returned to Parliament, for the first time in many weeks, on July 29, 2021 and he looked physically weakened and darker.

He continued treatment in Uganda, but by October, Dr Orem said, he lost communication with his patient “who was going somewhere”.

“The next time I heard from him, was through Minister [for Health Ruth] Aceng, in the middle of January, this year. He was not well at all, and [we] decided to quietly admit him in Mulago (Women’s Specialist Hospital) … my first question to him was: ‘Rt Hon Speaker, what have I done to you? Why have you done this to us?’ And what he said was, ‘my brother, help me’,” Dr Orem said.

Oulanyah had been a difficult patient not only for his doctors. Workmates who got to know about his condition had hard time convincing him to reach a hospital.

Among the pleaders was Ms Anita Among, who then was Deputy Speaker but has since been elected Oulanyah’s successor, who revealed that she on occasions enlisted Chief Justice Owiny-Dollo and Democratic Party president Norbert Mao to cajole and convince and unwilling Oulanyah to seek treatment.

During yesterday’s funeral service, Justice Owiny-Dollo said Oulanyah regretted not knowing about his condition early, which he said could have potentially resulted differently.

Between January and early February, Mulago doctors worked to stabilise Oulanyah, some of whose organs had started failing, so that he could be fit to fly overseas for specialist care.

Dr Orem said he recommended that the then Speaker be taken to the Washington University Medical Centre in Seattle, in the west Pacific coast of the United States, because the facility presented the best option for line four treatments since all first three lines had been exhausted in vain.

In February, Mr Oulanyah was evacuated aboard a chartered Uganda Airlines plane, which was not retrofitted as an air ambulance, via Iceland to the US in readiness for procedures which included resolving problems of a suppressed bone marrow.

Doctors in Seattle targeted to cure him using Chimeric Receptor T Cell Therapy (CAR-T). The procedure involves harvesting the bone marrow cells, modifying them to develop the receptors and infusing them again in the patient to attack the cancer cells.

Oulanyah was deemed ready for the treatment within a fortnight, Dr Orem said yesterday, but he then unexpectedly developed fever, viral and bacterial infections and his bone marrow became unresponsive.

“That is the issue why he never got the true treatment that we thought was going to be the magic bullet to cure him … the accurate cause of death is what the minister [stated] and I do not think there is any other cause that you should be thinking about,” he said.

In a detailed report to Parliament on Tuesday that she said was the autopsy findings, Dr Aceng said the immediate cause of Oulanyah’s death, contrary to claims by his father Nathan Okori that his son was poisoned, was multiple failure of vital body organs --- the heart, lungs, liver and kidney.

President Museveni announced the death of the former Speaker, who is due to be buried in his Lalogi ancestral home in Omoro tomorrow, on March 20 and he yesterday took exception that minister Aceng, and other government officials, had made the cause of his death public.

In the Tuesday speech, Dr Aceng cited the removal of Oulanyah’s spleen after government soldiers tortured him during a students’ strike at Makerere University in the early 1990s, as a “contributory factor” to challenges in his treatment and eventual demise.

In no-holds-barred comments, President Museveni regretted that he learnt about Oulanyah’s illness late, and suggested he would have dissuaded him from running for MP and speakership if he was aware in time.

“… I would have told him to concentrate on health, but I did not know [he was sick]. Health is wealth and is a weapon and you need to look after it very carefully,” Mr Museveni said, quoting the Bible multiple times to buttress his point that one reaps what they sow.

He said the ruling NRM supported Oulanyah’s bid for Speaker of Parliament because he was a “good cadre”, and rebuked tribalised public altercations triggered by the death of  “a patriot”.

DON'T MISS: If I’d known Oulanyah was sick, I would have advised him to focus on health – Museveni

Oulanyah’s first daughter, Ms Diana Aceng, who works as a nurse in the US state of Arizona, said her father had asked her to keep his health confidential.

“When I saw my father, I was in shock, I just looked down, but … [thought] he was going to get out because he [was] a fighter ... [However], the first time I saw him, he told me ‘my time has come’,” she said.

Ill health

For the tough political fights and huge electoral investments, the sudden deterioration in Oulanyah’s health, which culminated in his demise last month in the United States, was an anticlimax that took majority Ugandans by surprise, leading to widespread rumours about the killer illness.

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