5 things we learned in taking on big pharma

Today, on World Tuberculosis (TB) Day 2021, I want to look back on our #NoMoreTears campaign to get the pharmaceutical corporation Johnson & Johnson (J&J) to lower the price of bedaquiline, an important drug to treat people with drug-resistant TB, and share five things I learned from that successful campaign.

Lesson #1. David vs Goliath: You can do it!

No matter how exciting it feels to be part of a campaign, there’s no getting away from the fact that this isn’t an equal playing field. You are putting yourselves up against a very powerful multinational company, with its vast resources, masses of public relations staff, and armies of lawyers. It can be very intimidating.

However, there is one thing about grassroots organizing that a company can never buy. And that’s our commitment, energy and motivation to change the status quo. Working side-by-side with communities directly affected by the issues — people living with TB and TB survivors, as well as healthcare professionals — we are all driven by the same passionate conviction that medicines should be available to all in need, not just to those who can afford them.

Our strength is in our diversity. Whether that means, as in this campaign, working together with people with TB, TB survivors and activists, storming the stages at international conferences — or simply hearing and sharing first-hand stories about the devastating reality of life with TB — or the support we received from first-line responders and medical staff such as the famous ‘5B’ nurses from the United States, who wrote movingly in the media about why it’s important to increase access to drugs. Together we kept going when things didn’t look bright for us.

Bringing these diverse coalitions on to the streets, was key to achieve change with our campaign. On our ‘Global Day of Action’ where we organized protests in front of J&J offices around the globe, I made sure I got to our office really early. I had no idea if it was all going to work out or not despite the meticulously laid plans. So, when we saw the first photos starting to come in from protestors in Ukraine rallying in front of J&J’s office in Kyiv, I felt so relieved.

From that moment onwards we were just blown away as the stream swelled to a torrent of images and videos of people taking to the streets — in South Africa, Brazil, Ukraine, US, Spain and other countries — all to show solidarity with our demands. It was one the longest day of the campaign for me — 17 hours straight, but it was one of the best! (I still get goose bumps watching the video!)

Lesson #2. You can (and you will) do everything — even eat hot chillis.

Ten years of public campaigning has taught me that you need to be prepared to give yourself over entirely to keep things up and running. You’ll spend days and nights working, travelling, or navigating long but essential debates on campaign strategies with all stakeholders. The campaign actions themselves can also require some courage to execute — most memorably — to eat insanely hot chillis for #NoMoreTears.

What keeps me going is the idea of overcoming a system where it does not matter where someone is born or how much money you have to be able to access lifesaving drugs. For me it is not acceptable that a private company alone can decide on the price of a medicine, and therefore can determine who will live or die according to their ability to pay.

J&J didn’t develop this drug alone.

Bedaquiline was developed with considerable taxpayer, non-profit and philanthropic support. J&J received public investments in the hundreds of millions of dollars, including grants from the US government and various financial incentives, and treatment providers like MSF contributed to the research on the drug.

For me it is not acceptable, that we, the public, finance so much of the early stages of medical research and development (R&D) through our taxes, and that organisations such as MSF make their contributions to the process through clinical trials, just to see companies create a monopoly and hike the prices of the final products out of the reach of people who need them.

For me it is not acceptable that private companies get away with prioritising their profit margins over global health needs.

Lesson #3. Never give up and always be ready to change your plans.

Devising plans for success doesn’t mean you will be able to stick to them. Working on campaigns has taught me to always be ready for the unpredictable. If something can go wrong, it likely will, so you need to be able to think on your feet and improvise.

I will never forget the moment in the campaign when J&J changed plans at the last moment and failed to show up at a major TB conference in India. We had long laid our own plans to publicly confront the company there, right under the media spotlight created by the conference.

So, it was a huge jolt when we discovered that J&J had cancelled at the very last minute. We were ready to go, with our placards and our cameras — what to do? Well, we turned this vanishing act to our advantage and staged a public game of ‘hide and seek’ around the conference centre.

We filmed ourselves looking through the halls and corridors, on the balconies and under the carpets for anyone from the company — to engage with our audience back home and to show that the company was running scared…of us and our demands. 😊

Lesson #4. You will never win

It’s sad but true. Unless we are able to radically overhaul the way biomedical innovation happens, we’re never going to see peoples’ lives prioritised over company profits in the long run.

So, we continue to fight, each and every battle, drug by drug, vaccine by vaccine for fairer access. Ever since MSF started to provide humanitarian medical aid to people in need, my colleagues have faced significant gaps in the availability of effective medical tools to address the health needs of people we aim to care for.

Fatal gaps contribute to global injustice and north-south dependency, and decide who has the right to live and who will die. A failing R&D system is exemplified by a lack of research on neglected diseases that mainly affect the global poor, and exorbitant pricing for patent-protected medical goods that has begun to affect populations in the global north.

With the evolving Covid-19 pandemic, I am witnessing on a daily basis, how nationalistic governments and private interest are overriding a concept of global solidarity and the idea of equal access to public goods like medicines.

It is obvious that well-established coalitions of the pharmaceutical industry and national governments are able to push back heavily on a fair approach to access to publicly funded goods. Countries around the world are grappling to contain the pandemic, and inequalities driven by existing power structures are emerging.

Lesson #5: Small steps

So to close the loop on the #NoMoreTears campaign: The company did finally drop the price — not as much as we wanted, but we had made a difference. An affordable price is now within reach for a TB drug that can save hundreds of thousands of people’s lives.

But there’s still much work to do — many countries were left out of the lower price offered by the company, leaving many people with TB still in desperate need of bedaquiline. While we wait for more affordable generic versions of bedaquiline to become available, the price reduction is a helpful step in the right direction.

The win on bedaquiline was only made possible because people across the globe dedicated their time, energy and strength to it. And it has taught me one thing: it’s the small steps we need to aim for and to celebrate, while we are on our way to transform the status quo, creating a world where everyone has the right to access lifesaving medical tools. And we will only be successful in doing so, if we continue to create strong and diverse coalitions of people who are united by this vision.

And you?

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Source: Médecins Sans Frontières