Oseltamivir (Tamiflu) has been prescribed for my son, Oliver, multiple times. It’s possible he has taken this drug more than anyone.

Oliver was born at 26 weeks gestation and was left with significant bronchopulmonary dysplasia. He also has a complex congenital heart disease, now partially repaired, but he is left with moderate pulmonary valve regurgitation and right ventricular hypertrophy. This one-two pulmonary-cardiac punch has left him medically fragile.

Despite his multitude of health challenges Oliver has never done anything but try his hardest with a smile on his face. That is his super power. Like all superheroes he has a Kryptonite, not a green rock, but respiratory viruses. What would give you or me a runny nose leads to around the clock nebulizers and often oxygen and hospitalization while his battered lungs do their best to regroup. Twice over the years, despite being vaccinated, he had influenza A and those admissions were different. There was no turning the corner at three or four days, he labored on and on until I wondered how long his struggling lungs and heart could bear it.

Each time Oliver is admitted osteltamivir is started until the results of his influenza testing are available. Like almost every other physician I assumed it worked, but then again when death seems to be gathering strength from your child’s labored breathing you’ll take anything as long as it isn’t going to make things worse.

At the first sign of a respiratory illness we are at the doctor for a nasal swab. How he is triaged depends on his symptoms and the local influenza activity. Over the past 10 years, between inpatient and outpatient use, he has taken Tamiflu many times. One influenza season he took it twice. In 2009 I brought H1N1 into our house (the initial spring outbreak, so before a vaccine was available) and the only thing that kept me sane was Oliver’s vial of Tamiflu in the fridge.

But now we don’t even know if neuraminidase inhibitors work. The exhaustive search by dedicated researchers to get to the bottom of the data tells us that zanamivir and osteltamivir are ineffective at alleviating symptoms, preventing pneumonia, and preventing hospitalization. They appear to reduce symptomatic influenza, but what does that mean clinically if you don’t prevent pneumonia and hospitalization? For a healthy adult or child this tells me these drugs are useless, but what does it mean for someone like my son?

Why it took so long to get the data is a cautionary lesson in the verity of industry funded work. We need effective antivirals for influenza, but apparently we can’t trust industry when there are several potential billion dollar customers on the hook. If our governments want to spend billions on pharmaceuticals to prevent influenza epidemics, why can’t they be brave enough to use taxpayer money wisely and fund the research in an accountable fashion? Once they get it right they can sell it for a song or give it away. That has to be better than paying Big Pharma to do it with subterfuge and a massive retail markup, and not even get what we have paid for.

The Olivers of the world are waiting desperately for a better solution, and so are their mothers.

Jen Gunter is an obstetrician/gynaecologist in San Francisco. She blogs on her personal site at drjengunter.com.