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Testimony of Richard Rockefeller, MD, Chair, Board of Advisors, MSF-USA
May 15, 2003
This is a transcript of Dr. Rockefeller's extemporaneous remarks on May 15
Today, we would like to discuss the need for research and development into drugs for conditions including AIDS and TB, and especially for conditions that are what we call the most neglected diseases in the whole of the developing world. Diseases that many of you will not have ever heard of before, and frankly, although I went to medical school, I heard of once long ago in a classroom and had forgotten until I got re-involved here. Diseases like Kala Azar, Chagas Disease, Sleeping Sickness and so forth. These are diseases experienced only by the very poorest people in the world, so that there's never going to be a chance for a market for drug companies to develop and sell their drugs into. And yet millions of people die of these diseases each year. So that is going to be our focus today.
We really will not move toward discussions of AIDS, although we're deeply involved in the matter of treatment and prevention of AIDS worldwide. What we'd like to get out of this meeting, and this again is part of an overall approach to our own government's attitudes and actions in this arena. What we'd like to get out of this is an understanding, first of all, of the existence of these diseases, the problem of lack of access to drugs, and research & development for the drugs.
Particularly, we need a publicly supported research and a needs driven research agenda for these drugs. Right now, much of the research is driven by what the market will bear, in this case the market will never drive a research agenda into these diseases because the market potential will not justify investment.
And finally, we need a sustainable international framework for cooperation and an integrated approach to this problem by the governments of the world. And the US obviously has a huge role to play from many points of view. We have the largest pharmaceutical research and developing capacity of any portion of the world and our leadership makes a huge difference. Conversely, of course, our dragging our feet on any of these issues slows down progress of international organizations, so our cooperation is deeply, deeply needed.
I'm going to end my introduction with a personal note because there's kind of an irony for me being involved in this. I started out because I was interested in the organization, I was asked to take on this role to chair the advisory board. I was at that time a practicing family physician in Portland, Maine, and I was interested but I wasn't deeply engaged.
In the spring of 2000, I went to Uganda where I saw a number of the Doctors Without Borders programs, including a research program for new treatment approaches to malaria, new maternal to child transmission prevention strategies for HIV, and also a Sleeping Sickness treatment program in northern Uganda. While I was there, I myself began to feel sick, and I thought maybe I had picked up a bug or been bitten by some mosquito or who knows what. And to shorten the story, six months later I was diagnosed with - by the way, sleeping sickness is what's considered an orphan condition. It's in an isolated sector of the world with no market, and therefore a pharmaceutical company will never focus on it without some external stimulus.
Six months after I was there visiting this program, I was diagnosed with an orphan disease called chronic myelogenous leukemia. A type of leukemia that killed everybody, virtually, as recently as twenty years ago and killed almost everybody within about five years as recently as just five years ago. But six months after I was diagnosed with this type of cancer - cancer of the blood - Novartis came out with - Novartis is a pharmaceutical company - came out with a drug. The first pill treatment for a cancer anywhere - the most effective oral treatment for any cancer ever developed. And I am alive and healthy today because of this drug. It's quite miraculous, almost no side effects whatsoever. So I have an orphan disease while I've been engaged in a process of trying to support access to drugs and R&D for orphan diseases around the world.
I am a Rockefeller, I live in a country that has got the capacity to develop these drugs, and has the capacity to pay for them. My treatment costs, for the drugs alone, $30,000 a year. So that's four pills a day, twenty bucks a pill--$30,000 a year. And because of my extraordinary luck - I guess you'd call it luck, not so much luck getting the disease but luck living in this country - I'm able to be perfectly healthy. And all I can say is at some level, we - all of us in this room - share that same luck. We live in a country that has the capacity to care for us when we get sick. The juxtaposition of that experience with what I saw in northern Uganda where people die of drugs invented well over 50 years ago based on arsenic, that hurt like hell to take administered intravenously... kill one in five people from the drugs alone... kill one in ten, one in five are resistant to the drug, and nothing new has come down the pipeline until very, very recently for treating Sleeping Sickness. It is not right... is my bottom line. We need to change the situation.
It's just not acceptable now in a world of global commerce, global communication, global travel, to have 14 million people dying each year of potentially treatable communicable diseases, and we in the West are paying $30,000 for a treatment to keep me alive and nobody is making enough noise about it. So with that, I'm going to turn this over to my colleague Jill first, and then to Nicolas.