TCS Daily

Kondracke Confronts the Pain and Politics of Parkinsons Disease

By James K. Glassman - June 7, 2001 12:00 AM

For many years the public has known journalist Morton M. Kondracke as a voice of moderation amid often- animated discussions on TV's public affairs programs. Thirteen years ago, though, Kondracke and his wife Milly learned she had Parkinson's disease. So he turned his passion to doing anything he could to help. The experience revealed, in very personal terms, the politics and numerous power centers vying for research funds and publicity in order to keep or win official Washington's attention. Kondracke chronicles this side of his life in a new book called "Saving Milly."

The executive editor of Capitol Hill's "Roll Call" newspaper recently talked with longtime friend and Tech Central Station Host James K. Glassman.

James K. Glassman: You've written a very moving and important book called "Saving Milly." Mort, you and Mill and I have known each other for twenty years. This is a very personal book. Was it very difficult to write?

Morton Kondracke: It wasn't. It just took a lot of time, but it - well - I guess it was difficult. It wasn't difficult in the sense that it was painful. It was difficult because I had to dig. I'm used to political commentary, and this is very personal. I had to try to remember a lot of things, and I tried to dredge up feelings and stuff like that. So I rewrote and rewrote and every time I wrote again, I would try to remember how it felt and what Milly said. So, in that sense it was difficult, and the last chapter is obviously just very difficult to even read.

Glassman: The last chapter?

Kondracke: It's called "Losing Milly." The fact is that Milly, unless there is some sort of miracle, is dying because this disease is in the process of or rendering her unable to swallow. So at some point, I would think a year or so from now, we'll face a decision about a feeding tube. She's lost her ability to speak almost entirely, and so she's going to be trapped in her own body. I don't know what her decision is going to be about a feeding tube.

Glassman: How long has Milly had Parkinson's disease?

Kondracke: Thirteen years.

Glassman: And apparently she has a particularly virulent form of it?

Kondracke: Yes, there are various forms of it, but she's got Parkinsonism. There's classic Parkinson's disease, which is a simple deficit of dopamine, which is bad enough. It all leads to the same conclusion, where you're basically a prisoner in your body. Everybody gets there eventually, unless one of these great new therapies works on it. And in some cases it does. But she's got a syndrome, which nobody can quite identify, that makes the process faster and the results more devastating.

Glassman: The book is a remarkable combination of personal memoir, biography of Milly and discussion of the science, politics, and clinical aspects of the disease. I wanted to concentrate, because this is Tech Central Station, on some of these policy matters. Do you believe that Parkinson's can be cured? What is the state of the science today?

Kondracke: Well, I was on the Advisory Committee for the Neurological Institute (NINDS) at the National Institutes of Health. And the then head of NINDS said -- and he said this about no other disease -- that this disease can be cured within five to ten years, because there is so much fascinating science taking place. There are surgical techniques; there are genetic therapies; there is something called the neural growth factors, which can repair nerve damage; there is stem cell research. There is just an abundance, and more is known about Parkinson's disease than any other neuro-degenerative disease.

So in the process of curing Parkinson's, if there were enough resources devoted to the task, you would also discover things that might help cure Lou Gehrig's disease, Alzheimer's and Huntington's disease, and a whole range of diseases. The question is, let's get the money devoted to the purpose. And it still is not being done.

Glassman: Let's talk about the money. Your particular aim has been to double the federal funding received by NIH. In fact, the Bush Administration is on track to do that. Is that right?

Kondracke: That's right. I've always had two purposes. One is to just get more money for Parkinson's. At one point that would have involved competition with other diseases; you'd be robbing AIDS, or robbing cancer, or robbing some other disease to benefit Parkinson's. That was a loser both politically and morally. So I started working on doubling the NIH budget, and Congress was on track to doing that. The Bush Administration is promising to do it, although it didn't quite come up to the mark this year. I think Congress will do it anyway over a five-year period. The NIH budget will be doubled.

Glassman: It's like 14 percent a year, if I'm correct?

Kondracke: Right, 14.5 percent a year. The Parkinson's budget has been doubled, too. But it's been doubled from such a low base that it still is inadequate.

Now, as part of the lobbying, the Parkinson's Action Network, which I am affiliated with, got Congress last year to order NIH to come up with an optimal budget and a strategic plan for conquering Parkinson's disease. It calls for an additional $70 million in the first year, $140 million the second year, and over a five-year period, $1 billion extra to be spent on Parkinson's-related research. That has not been done. That money has never been appropriated. NIH does not have the money or it hasn't, for bureaucratic reasons, applied that money to Parkinson's.

Glassman: Right. The slogan of our website is, "Where free markets meet technology." I am a big advocate of using federal funds for basic research like what NIH is doing, but where does the private sector fit in to all this? Doesn't a drug company have an incentive to find a cure for Parkinson's as well?

Kondracke: Absolutely. And there are lots of drug companies that are working on cure or medicine. Practically every day, there is a story in the newspapers about a new breakthrough drug on Parkinson's. Now, what tends to happen is that the stories get hyped. And the medicines are not quite as revolutionary and as dramatic as they seem to be. But, certainly, various phases of this problem are being attacked by the pharmaceutical companies. One of my other pet causes is preventing basically Democrats from putting price controls on drugs because that's going to stifle research. Research is what it's going to take to cure all these diseases.

Glassman: Has Milly found that any new drugs have been helpful to her?

Kondracke: Not really. I think it's partly because most of the drugs are designed to help the basic Parkinson's medicine, which is called L-dopa or Sinemet. It's marketed and manufactured by Dupont and Merck to be more effective in replacing dopamine that is lost in the body, which is what Parkinson's is. So, most of the drugs that are being developed are boosters for L-dopa. Milly's particular syndrome is not as responsive to L-dopa as is the case with other people. If Janet Reno, for example, has a classic case of Parkinson's disease, as her case advances other drugs like Mirapex® or ComtanĀ®, which is manufactured by Novartis, or some combination of them will presumably help the L-dopa ameliorate her symptoms for a longer time.

Glassman: Right. I want to get back to what you touched on, which is the competition among disease-interest groups for the pot of federal money that exists. You tell a very candid story about your original desire to take money from AIDS because you thought it was unfair that AIDS had so much money. And then you changed your mind. Can you tell us about that?

Kondracke: Sure. The basic fact is that AIDS gets about $1,800 per victim per year spent on research at NIH. Cancer gets about $400. Diabetes has traditionally gotten even less than Parkinson's. When the Republicans first took over Congress in 1995, when I started this advocacy, they were trying to hold down all federal spending. They said, "If we're going to give more money to Parkinson's, where are we going to get it?" You just look at the budget and the disparity and how much AIDS is getting. They said, "Well, we'll take it from AIDS, and we'll give it to Parkinson's." Partly, the rationale was that AIDS is a preventable disease, and there was some homophobia involved in all this on the part of a few. And I said, "Look, all I care about is money for Parkinson's. Sure, take it from AIDS."

What happened next was I was then working on a television documentary and this AIDS activist said, "One, this is immoral. Don't take it from us. And secondly, even if you did manage to chop the AIDS budget, you would not get it. It would go to diabetes, which has more political power behind it than Parkinson's does."

I said, "You're absolutely right." So that's when I started lifting the tide for all boats by doubling NIH.

Glassman: I think people might be surprised at the notion that certain diseases have more political power behind them than other diseases. But that's just the fact of life, isn't it?

Kondracke: Yeah, I mean all you have to do is look at any Academy Awards ceremony. Everybody on stage is wearing a red ribbon, that's the AIDS symbol. Then sometimes they're wearing pink ribbons, which is the breast cancer symbol. All of that is a way of saying that they've got a lot of political oomph, or at least show-biz oomph. And show-biz oomph translates into money.

Glassman: You have a certain amount of show-biz oomph in Michael J. Fox.

Kondracke: Enormous -- it makes an enormous difference. And beyond his show-biz oomph, he's done something wonderful. He has created a private foundation, which is going to raise tens of millions of dollars to fund actual Parkinson's research, to supplement what the government does -- to stimulate the government actually -- and to target the kind of research that the federal government might not. At NIH, what tends to happen is that the proven researchers tend to get the money. New researchers, younger researchers, or people on the cutting edge don't get the money until they have gray beards. What the Fox Foundation will do is award it to cutting-edge experiments, and that will attract a lot of attention in the scientific community to Parkinson's. It's a boon on every level. Michael J. Fox has just done wonders for Parkinson's.

Glassman: Let me just ask you two more questions. Another area of political controversy involving Parkinson's is stem cell research. Can you tell me where we stand and just how important that research is?

Kondracke: Well, there are two kinds of stem cells: adult stem cells, which you can get from any part of a grown body, and embryonic stem cells. These are the inner- core of days-old embryos that can develop into any kind of cell. Theoretically, these cells - you have to destroy the embryo - the embryos involved are the ones that are left over at in vitro fertilization clinics around the country. There are thought to be 150,000 of them that nobody is going to use and they're going to be destroyed.

The right-to-life movement and the Roman Catholic Church are saying that it is better to destroy these embryos, or preferably have them adopted -- which is not going to happen -- than to use them for research.

President Bush is on the edge of a decision about what to do about this. He is torn morally and politically about what to do. And apparently there is a fight within the Administration. It's known that the Secretary of HHS, Tommy Thompson, is in favor of going ahead with this research, the federal funding of it -- provided that the federal grantee does not actually destroy the embryos. Somebody else would derive the stem cells and then federally funded researchers could do the research.

But Bush is being urged by the right-to-life movement, the Church, and some of his political advisers to write an executive order banning federal funding, which I think would be a tragedy because there are about 300 Nobel Laureate scientists who have said, "Look, this is such a promising area of research. You could theoretically cure severe burns; you could fix spinal injuries; you could restore neurons lost to Alzheimer's and Parkinson's victims, and MS patients. All kinds of victims of heart disease, you could theoretically cure them with stem-cell research. Nobody is going to create embryos to destroy them, and you could write the law to prohibit that." So this is a big fight. I don't know what Bush is going to do.

Glassman: Just a last question. What was Milly's reaction to the book, especially to the last chapter?

Kondracke: It makes her, obviously, very sad. But since we talk all the time about what we're going to do, her latest decision is that, if the time comes she will take a feeding tube, provided she has the option of removing it if life becomes intolerable. So, she has come to terms with the final chapter because, like everything else in the book, it is honest and straight as it can be. We have talked about it, and she's not surprised by it. It's just terribly a sad chapter. And she was made sad by it and so am I.


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