Billy Tauzin Address at 2010 PhRMA Annual Meeting

Billy Tauzin Address at 2010 PhRMA Annual Meeting

Billy Tauzin
President and Chief Executive Officer
Pharmaceutical Research and Manufacturers of America

PhRMA Annual Meeting
Arlington, VA

March 18, 2010
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Five years ago, (after a great and satisfying 34-year career as an elected official of my state and nation) I faced a most interesting decision: what to do with a clean bill of health – after I had actually prepared to die.

I had just been through the worst 12 months of my life – you know the story – surgery, chemotherapy, radiation, near death experiences and the last sacrament of my church – only to emerge from it all with a very unexpected clean bill of health.

I remember my mind racing back to a dark, deserted two-lane highway in South Louisiana, years earlier, when at 2:00 one Sunday morning, I knelt down on that blacktop surface, bleeding profusely from a cut and battered nose, next to the overturned, demolished wreckage of the Mercury Marquis automobile I had just crawled away from. I remember kneeling there and raising my eyes to a strangely beautiful star-lit sky, and muttering a single word to an unseen deity – a single word, “why?”

It had just dawned on me that I knelt only 100 yards away from the spot where a great friend and colleague in the Louisiana Legislature had only a year before lost his life in an accident much less catastrophic than the one I had just crawled away from.

I had fallen asleep at the wheel with the cruise control on at over 70 mph, trying to hurry home after a long week of work in Baton Rouge – awakening to the sight of a culvert rushing up in front of me as the car careened into the roadside ditch, feeling the horrific force of the collision and then flying and crashing again, spinning through the air and crashing over and over until every corner of the roof of the car was crushed to seat level – every corner, that is, but one – the one in which I sat – unbuckled and clinging to the broken steering wheel and steering column. I must have smacked the windshield with my busted nose – but otherwise I was intact – kneeling on that road, and asking that unanswered question: Why? Why was I alive when my friend’s life had been taken? What did that mean? What was expected of me? And how would I ever know?

You know, the heavens don’t open up and the voice of God doesn’t boom down an answer to questions like that – we’re left to sort of figure it out for ourselves.

So, in 2004, as I contemplated my unexpected good fortune to have this clean bill of health, I remembered that night and that question, and then I made the right decision about what to do with that clean bill of health – I came to PhRMA – and I have never regretted it.

And now, five years later, here I am again – with a new, surprising clean bill of health, and a new set of options, kind a déjà vu, actually.

Again, I’ve just come through one of the toughest 12 months I can ever remember – following a remarkable and hugely satisfying career – working with some of the people I’ve most admired and respected – and having done some pretty fantastic work together.

These last five years have been truly incredible! We actually set out five years ago to do nothing less than to turn this big PhRMA ship around and set it out on a new course – to recapture the value of the PhRMA brand – to re-earn the trust of people who had lost faith in us – to define a path of openness, of willingness to be a friend before looking for one, and of keeping our eyes firmly upon the single mission of serving the needs of our patients – protecting and enhancing our companies’ abilities to continue advancing the science of medicine. We had to take the target off our backs, to wear a goodwill badge instead of a bull’s eye, and to prove our commitment to patients by our deeds, not just our words.

We could have let the emerging Group on Access and Affordability run, on its own, creative idea of a P.P.A. program. We took it on instead – at some risk – but we made it work – and now 6 million patients are the better for it, thanks to the generosity of our companies and a top notch communications plan. We could have let the world community pound away at the IP foundation of our work. We took it on instead with a new international access program and created a whole new world dialogue, along with a new authentic relationship with key NGOs.

We could have remained a one-party trade association, but we correctly reasoned that our only real enemy was disease and that only a fair and less partisan PhRMA would allow us to continue our work in the face of mounting and increasingly ugly partisan conflicts here in DC and around the country. That transition to a more balanced politics, while difficult then and now, continues to serve our critical mission. It was the right thing to do, and we would be wrong to let either national party determine our policies or our principles into the future.

We could have remained an industry of “just say no!” – simply resisting challenge and change – but we were bold enough to accept new responsibilities of self-regulation and changing expectations with new codes of conduct on advertisements and marketing, and in the transparency of our work in clinical trials and in politics. And there is still more to be done.

We could have remained an industry of “just say no!” – simply resisting challenge and change – but we were bold enough to accept new responsibilities of self-regulation and changing expectations with new codes of conduct on advertisements and marketing, and in the transparency of our work in clinical trials and in politics. And there is still more to be done.

We could have remained comfortable with our old friends and allies. Instead, we have reached out to make new friends and build new alliances. And we must continue to nurture those new relationships.

We could have remained insular. Instead, we opened ourselves to more and more public scrutiny and awareness, beginning – but only beginning – to tell our story to someone other than ourselves.

This, on the whole, has been an amazing journey, and it should not – it cannot – be allowed to end.

This great ship has turned and no one should be allowed to turn it back.

The last 12 months in particular have represented the greatest challenge to our mission on behalf of America’s patients that we have probably ever experienced. As the work on national health care reform legislation may, as we gather today, be finally coming to a conclusion in the Congress, I believe we should take note of one of the most encouraging developments in the work of the PhRMA Board over the last five years – something strikingly different from PhRMA Boards of the past.

All of you are aware of the Mayflower Rule – the procedure which allows any member company to dissent from the majority and represent a different view on any policy issue adopted by the Board. Never, in the last five years – through difficult negotiations on self-regulatory codes of conduct and difficult and complicated policy debates, here in Washington and throughout our 50 states – has any member company felt compelled to exercise its rights under the Mayflower Rule. Our Board has led, as one – when it needed to lead and it has followed, as one when it required us to follow. Few associations in this town have been so blessed – and I truly believe that this has been the great secret of every success we have achieved together.

Despite speculations to the contrary, this year’s difficult work has represented one of the greatest examples of industry solidarity in the history of PhRMA. Our strategic decisions have been unanimously endorsed, our execution has been extraordinarily effective – considering the enormous challenge – and our CEO involvement has never been more robust or as determined in the long history of Congressional advocacy. People in this town still marvel at how we have collectively managed in the face of unthinkable possibilities.

Nothing I know of is perfect. Neither has been our work on this gigantic project or its huge product, and everything can be improved upon. But, in my very humble opinion, you should all awaken every day with a deep sense of pride and of appreciation for the men and women of PhRMA – all of them – who have fought and continue to passionately fight for you and for the great value of your work, in every minute of their waking hours. They are – they have been – in their world of advocacy, a Super Bowl Championship Team, and I have been honored to lead them, to work with and for them.

We have done big things together, but one of the simplest and yet proudest moments of these last five years has been the moment when two of our CEOs and their companies broke down all the legal barriers and allowed a couple of promising molecules to be researched on behalf of the Progeria Foundation. I remember vividly the first day we at PhRMA had the opportunity to meet Sam – the young Progeria patient spokesman.

I knew nothing of Progeria. But Sam educated me and broke my heart. To hear of children growing old and dying of old age at age 14 or so was almost too much to bear. How could a disease be so cruel? At M.D. Anderson, when I thought I couldn’t take the chemo and radiation anymore, I would visit the little, bald-headed children in the cancer ward – and they inspired me to go on.

Sam was different. He sent me into a deep funk – a sense that some things are hopeless and courage and good humor and even faith might not be enough. But two of our CEOs basically said to me – hang the legal risk, Billy, you want us to free those molecules and have them tested for those kids. We’ll do it. We’ll find a way – and they did – and kids like Sam have hope, maybe for the first time. And so I count those moments at PhRMA as among our finest.

But there is another young man who early in my life here in Congress framed my primal understanding of disease, of the special nature of these rare diseases, like Progeria, and of the importance of innovative medical research.

His name is Keith. He was just a young boy when I came to know him – a normal kid – the son of my Congressional office manager, Raychel and her husband Ron Bartek. Just a normal kid with a very abnormal condition, a very rare disease – Friedreich’s Ataxia. A disease with no cure, no treatments and, as a result, no real hope. More prevalent among Cajuns, and people of French dissent, Keith’s disease and its news came with a special kind of dread. This was a disease of my people – of my home and heritage - and this was a kid within our Congressional office family.

Raychel asked for our help. How could we not?! She was going to lose her son and we had to do something – anything.

I remember walking with him – at first – down the halls of the Rayburn House Office Building, to each year’s Appropriations Committee hearing – introducing Keith and, with him, literally begging for research funds to find a cure or at least a treatment before he would lose his muscle control – before that muscle loss accelerated and took his life, probably in his late teens. I remember Keith on crutches and later in a wheelchair, going down those halls as we made that same yearly trip to the Committee hearing. I remember his cheery attitude – how pleased, how proud and privileged he felt to represent not just his cause, but the cause of each kid suffering with Ataxia, or some other crazy unheard of disease. And Congress responded with the first ever research funds for “our” disease.

But mostly, I remember reading the awful gut-wrenching email I received just a month or so ago to let me know that Keith had passed away in the loving arms of his mother – that we had failed to save him – and with him – so many others.

As I talked of Keith and how we failed to save him, his mother reminded me of the research Keith had inspired, both public and private, of the seven clinical trials underway, of the hope his life had purchased for other kids like him.

This is, after all, what we do. We create hope where there is none, and when hope runs out, we re-create it for those who follow. I have been a personal beneficiary of that process, and it was why, five years ago, I answered the question, “What now?” with the correct decision to spend these last five years here with you at PhRMA, grateful every blessed day for every moment of life, determined to play some role in keeping the cauldron of hope boiling with the excitement of new discovery and medical innovation.

Those five years have represented a privilege to all of us at PhRMA – a privilege each of us share in believing, with real justification, that what we do here in Washington and in capitals across the country and the world, in some small way contributes to the life-giving nature of our companies’ collective life science research. That each of us, every day, helps make it possible for someone to have hope, where there was none before – to share precious time, otherwise denied them by disease – to experience a quality of life, otherwise limited, restricted and constrained – to live with less pain – or to simply recognize or be recognized by a lifetime spouse or loved one, as they grow older together.

What you do in this business – what we have been honored to be a part of all these years – will never be fully appreciated. Face it and accept it. But know this for yourselves: yours is not just about a life in business; yours is the real business of life.

And thinking of Keith today has set me to wondering.

What is it we’re missing? Why is it that it takes a horrible disease showing upon our doorstep before we get religion – before we suddenly wake up and realize how critical is the life science research that you do – how vulnerable all of us are without it? Why does it take a doctor looking us in the eye and telling us there is no hope because science has not yet gotten around to our particular disease, to turn us into advocates for more research funding? What will it take to wake this country, to make us understand what a national treasure are our scientists and our research labs?

I guess it’s just human nature not to think about how tenuous life is – until our hold on it is threatened.

But that is no excuse for people who should know better. It’s no excuse for health care bureaucrats who don’t even begin to understand the pain that real patients and their families experience waiting helplessly for an on-time decision on a new promising medicine or therapy, only to read about missed deadlines, unnecessary delays, and bureaucratic barriers, all based on an increasingly excessive risk-adverse premise. We desperately need better balance here. And it’s no excuse for policymakers who can’t seem to recognize that life science research is the cornerstone of medical innovation and a huge part of our knowledge-based economy. Do we have to lose every last job in America before somebody connects the dots and calculates the losses?

It’s certainly no excuse for those who say nothing about the ads calling for more lawsuits against the products of medical innovation and then rail against an ad that informs patients about the warning signs of disease and the new options for treatment. Something is wrong in America when we make heroes of trial attorneys and villains of our medical scientists.

And, thinking of Keith today, we should be reminded that we should continue to bring more and more of our science to bear against all diseases, even those with small patient populations, just as we focus our attention globally on the big, neglected diseases of the world. So many parents, like Raychel and Ron, are ready to rally to our cause, and we need to figure all this out, especially as our science drives us to more targeted, precision and even personalized medicines. For example, while we continue to conceptualize a global virtual lab for neglected diseases, why not conceive of a National Virtual Lab for rare diseases here in America?

I’ve met with so many of our scientists over the past five years. I have sensed their passion. With a National Virtual Rare Diseases Lab and just a little encouragement, I can see many of them volunteering their time and talents for such an effort. And like our PPA efforts, America could see our hearts, not just our businesses. And that, as Martha Stewart would say, would be a good thing.

We will need more, not less, public support if we hope one day to be able to repatriate our global earnings to help our Governors create centers for biopharmaceutical research here in this country – to create more, not less, growing life science economies, to develop more, not fewer, great paying American jobs connected to our work – to do more, not fewer, clinical trials here in America – and to discover more successful treatments and cures for the biggest and, yes, even the rarest of diseases.

If we can build that public support, there is every reason to believe that we can remain the world’s leader in life science research. That goal is within the vision and the reach for all of us who care – all of us whose job it is to think about this every day – long before we face our own destiny with disease. Even on days long after this health care debate is behind us, even when we are not personally confronted with the reality of young patients like Sam and like Keith – all of us need to fiercely dedicate ourselves to this effort to build a vibrant and sustaining environment for the continued success of life science research in America.

That has been our mission here at PhRMA – it has been my passion as your President – and it will always be.

As for myself, I will not tell you good-bye. This is not a farewell. My passion for this work is not nearly satiated. I am now and will ever be an advocate for the patients you serve – and because of them – for the work you do. I am not abandoning this journey – I am merely changing lanes on its long course.

Most of you – I know – because you have been kind enough to tell me so – are saddened by my leaving PhRMA – and I thank you for those sentiments; but we are all replaceable, and you will find a great replacement. I am certain of that.

And if you know me as I think you do, you have to know that you haven’t heard the last of me, or of my work. I have some big ideas to explore and some big projects to help define the next five years of this second chance life that you have helped win for me.

Maybe in one of those big ideas of projects I’ll find the full answer to that question I asked kneeling on the deserted blacktop road so many years ago, Why? Why am I still here? What is yet expected of me?

But then, maybe the poets have it right after all, when they admonish us that “Ours is not to reason why. Ours is just to do or die."

Given that choice – I intend to keep on doing. Perhaps we’ll find other ways – you and I – to do some great things together again.

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