My Time with Larry

Larry Kramer, the playwright and AIDS activist, died yesterday at age 84. He left his mark in two different worlds – the arts and health care. He changed me, too.

I was sad to read of his passing but this is not an obituary covering all the details of his dynamic life; it’s a brief reflection starting when we met in 1988. I was the chief representative to the HIV/AIDS and oncology patient communities at drug giant Hoffmann-La Roche and he was on the other side of a conference room table. His first comment to me was, “Bristol-Myers met us in a nicer hotel.”

The year before, I joined the company’s Public Affairs department from the R&D group. There was a need for someone with a technical background to help explain what was coming out of the labs to the general public. I landed in the role and immediately found myself in the middle of history. Roche was one of only three companies at the time that had a late-stage anti-HIV drug development program. Burroughs Wellcome (now part of Glaxo) had the first marketed product, Retrovir®/AZT. Bristol-Myers (now Bristol-Myers Squibb) and Roche had retroviral analogs in the pipeline.

Burroughs Wellcome was reviled by the AIDS community Larry helped to organize. Drug prices were high and communication from the company was absent. There were no best practices, no case studies on how to communicate with patients. It simply wasn’t done. Companies would inform the “learned intermediary” – the physician – and he or she would communicate with the patient.

Today, there’s at least one patient advocacy organization for any given disease. There were only a handful of AIDS groups in those days. Larry and others paved the way for all the rest.

Bristol-Myers decided to meet with the AIDS groups and I began my campaign to convince Roche management to do the same. I remember making a presentation to the Executive Committee and quoted Lincoln: “As our case is new, so we must think anew, and act anew.” It wasn’t the easiest sell. But people realized there were both ethical and business considerations at play – many of the activists were patients trying to save their own lives, and they were phenomenally organized and well informed. The potential benefits of hearing the patients’ point of view and adjusting our own plans were new and valuable concepts.

A letter from Larry’s organization, ACT UP (the AIDS Coalition to Unleash Power) was the catalyst for our first meeting. He once said, “If you write a calm letter and fax it to nobody, it sinks like a brick in the Hudson.” The demands in the letter were copied to a long list of top-tier news media, members of Congress, AIDS activists, and health care policy makers. I wrote back, explained our research initiative, agreed to meet, and copied back the entire list.

Then, my phone rang. “What are you doing writing back to all my constituents?,” he barked. I said, “They’re our constituents, too.”

That was a pivotal moment. Yes, I gained some respect by coming right back at him but the truly important piece was that first step we took into a common ground. Our constituency was their constituency and everyone wanted new, effective medications in the hands of patients as soon as possible. The two “sides” worked to expand access to experimental therapeutics, enroll patients into clinical trials, support NIH funding, and lobby for FDA reform to speed drug reviews and approvals.

The world was changing. The normal course of business – the normal course of life – was disrupted. But progress was made – advancements in understanding and equality, as well as advancements in medical science.

Larry was called a troublemaker and much worse. But at least there was talk back then and a respect for science. It’s worth noting that ACT UP’s slogan was Silence = Death. With COVID-19, I’m afraid Silence has been replaced by Division and Ignorance. Maybe a little Larry Kramer-style agitation wouldn’t be such a bad thing to get people think about the state of our society and the status of our health care system.

Between blog posts, I invite you to follow me @pauloestreicher. 

A Message About Messages

This article also appears in Medical Marketing & Media.

Dr. Marijn Dekkers, CEO of Bayer, feels underappreciated. He has some good reason. At Bayer’s Spring Financial News Conference (on Feb. 28^th), he said, "Almost every day, newspapers publish something about cancer – statistics, the best doctors, the best hospitals, the best treatments." Yet, they don’t discuss, "the molecule, the invention or the scientist behind the invention without which the doctors, hospitals and treatments could not help patients."

People go into a hospital, they interact with health care providers but what they see mostly from the pharmaceutical industry is a little, unimpressive looking pill. This isn’t new. Low trust and reputation scores have been a fact of life for decades now. The anger over high prices and low transparency has not been offset by improved health outcomes or the positive impact on jobs and the economy. Dr. Dekkers said, "I feel that this lack of appreciation for our ideas and innovations has to change." 

More credit ought to be given to the investments and inventions made by the biopharmaceutical sector – no question. But placing responsibility on the media for a perceived lack of fairness seems misplaced. The health care industry is attempting to meet the needs of its customers and so is the news media. In most cases, they’re selling a story with a point of view because that’s what the market is telling them to do. And they’re constrained further by the revolution in social media. There are fewer and fewer “real” journalists, professionals with credentials who have an understanding of the issues and the science. How many health and science sections in major daily newspapers have survived? Can you get beyond one hand? 

Today’s reality is health care is covered largely in the business sections and the industry feeds right into it. The first two-thirds of Dr. Dekkers’ talk was focused on his company’s impressive financial results. It was, after all, a financial news conference. But if getting a fair shake by the press was of such concern, perhaps he should have allowed his CFO, who was the next speaker anyway, to discuss all the numbers.

Next time, Dr. Dekkers may wish to lead off with and stick to some of his briefly mentioned closing messages – Bayer’s commitments to sustainability, ethics, access, value and serving the needs of the patient community. As messengers, as leaders, the tone should be set using the words, images and emotions that best communicate the industry’s contributions, not just the spreadsheets and stock charts. Tell the audiences what’s in it for them.

But there’s still a big missing piece to this communication puzzle. Dr. Dekkers pointed out, “Even the most outstanding ideas and scientific breakthroughs have no chance if people do not accept, appreciate and support them. All too often, people are afraid of – or uneasy about – new ideas, inventions, processes or products.” Indeed, the industry’s stakeholders must have a higher level of health and science literacy. Dropping information – even crucial or compelling data – onto the heads of an unprepared public, or expecting a response to another “call to action,” is unproductive and unrealistic. A massive, sustained education effort is needed to help turn the ship of disbelief and discontent.

Of course, a more knowledgeable public will not guarantee an enhanced corporate reputation. It must be earned. It will take time and the self-inflicted wounds – the reputation-killing missteps and misdeeds – need to stop or at least be minimized. Our job as strategic communicators is to help find common ground and common language, increase mutual understanding and secure the win-wins we know are out there.

Between blog posts, I invite you to follow me on Twitter @pauloestreicher.