ABC NEWS 20/20
CRAP: AIDS Gets Too Much Money

Lobbying for Lives

20/20
Monday, Oct. 11, 1999 __(This is an unedited, uncorrected transcript.)

CONNIE CHUNG, ABCNEWS: If anything in Washington could be above politics, youíd think it might be the way Congress spends your tax dollars to battle diseases. Every year the government puts billions into finding cures. But how is that pie cut up? Is it fair? John Stossel wanted to find out who gets the biggest slice and why. His story starts with a woman whose life or death may depend on how those questions are answered.

JOHN STOSSEL, ABCNEWS: (Voiceover) It is nine in the morning, and Joan Samuelson is trying to get up. Some days she canít get up. Twelve years ago, Joan learned she had Parkinsonís disease. Since then, sheís been gradually losing control of her body. Mornings, she is almost completely frozen, unable to make her muscles obey or stop the shaking.

(Joan Samuelson in bed; Joan shaking uncontrollably in her bed)

JOAN SAMUELSON: Itís like being a prisoner, and the jail cell is my body. And Iím locked in, and I can see out, and I can think and I can know what I want to do with my day, but I canít move.

STOSSEL (Voiceover) She says it takes all her strength to slowly reach the pills that control some of her symptoms. Joanís doctors tell her eventually the pills wonít work anymore and Parkinsonís will take her life.

(Samuelson struggling to reach for pills near her bed)

SAMUELSON: I will slowly slide away. I will lose my capacity to take care of myself, and for some period of time I will disappear, at some point or another, unable to move and speak, before I die.

STOSSEL: (Voiceover) Yet, even more devastating than her disease, she says, is that scientists tell her they could cure her Parkinsonís if they just had more research money. But they donít, they say, because the money goes elsewhere. That means that even when her pills get her moving, as they did today, Joan says her own life is slipping away needlessly.

(Samuelson in bed; Samuelson exiting public transportation)

SAMUELSON: Parkinsonís is going to be treated effectively, cured, whatever you want to call it, probablyóI mean, probably easily within 20 years.

STOSSEL: In time for you?

SAMUELSON: Twenty years wonít be in time for me. Ten years probably wonít be in time for me.

STOSSEL: If they just gave more research money, it could be in time for you?

SAMUELSON: Oh, absolutely.

STOSSEL: (Voiceover) Samuelsonís now given up her career as a lawyer to devote what time she has left to asking Congress to set aside more money for Parkinsonís. Here she got to meet with Senator Arlen Specter, who explains to her that often itís he and other senators, rather than research scientists who know best how the money should be spent.

(Samuelson walking in building; Samuelson meeting Arlen Specter)

SEN. ARLEN SPECTER: We have contacts with America much more so than the people in the confines of NIH.

STOSSEL: (Voiceover) NIH means National Institutes of Health. Scientists here decide which researchers around the country have the most promising ideas. And then they distribute grant money to those scientists. Now, NIH isnít the only source of research money. Your charitable contributions help, tooóall of those charity balls and walk-a-thons. But the millions these campaigns raise amount to little compared to the billions government spends.

(National Institutes of Health building; laboratory; charity balls; walk-a-thon)

STOSSEL: Now, given that these billions are your tax money, you would think they would be sure to spend it on the research scientists think will save the most lives or relieve the most suffering. But amazingly they donít, because Congress makes sure that they spent the lionís share of the money on the people who have the most political clout.

(Voiceover) If you want to know how to make money and influence the government, look no further than the AIDS lobby. Fifteen years ago, as AIDS was killing more and more people, NIH spent little on AIDS research. So, desperate to be heard, AIDS activists rewrote the book on medical research lobbying. They heckled President Reagan, stopped traffic, marched on Congress and accused politicians who ignored their demands of discrimination against homosexuals.

(AIDS activists shouting; Ronald Reagan; activists stopping traffic; activists marching)

UNIDENTIFIED ACTIVISTS: Shame, shame, shame, shame.

STOSSEL: (Voiceover) The result? AIDS research now gets more money per patient than any other disease. The remarkable success of the AIDS lobby then became a model for people who wanted more money for breast cancer.

(Activists marching; breast cancer activists marching)

GROUP: (In unison) Show us the money. Show us the money.

STOSSEL: (Voiceover) They were even specific about how many billions they should have.

(Breast cancer activists)

GROUP: (In unison) 2.6 billion dollars. 2.6 billion dollars.

FRAN VISCO (President, National Breast Cancer Coalition): The Republican leadership was unable to walk five minutes from inside the Capitol to be out here with us today.

STOSSEL: (Voiceover) Politicians who were not quick enough to show their support for this cause were labeled anti-woman.

(Politician)

VISCO: But they will hear from us.

STOSSEL: (Voiceover) This campaign worked, too. In seven years, NIH breast cancer research funds increased tenfold. And today, what politician doesnít want to be seen supporting this cause?

(Campaign scene; Al Gore)

VICE PRESIDENT AL GORE: We all want to win the real race to find a cure.

STOSSEL: (Voiceover) We all do. But what surprised us, and what the AIDS and breast cancer lobbies may not want you to know, is that among killer diseases, breast cancer and AIDS arenít even near the top of the list. Breast cancer is eighth, AIDS 17th. Yet AIDS, with its $1.8 billion NIH budget, gets the most money. The number-one killer, heart disease, last year got half a billion dollars less. Per patient, the disparities are even greater. Last year AIDS got $2,400 per patient from NIH, breast cancer $230, heart disease just $108. Parkinsonís: $78. And diabetes, which last year killed more people than AIDS and breast cancer combined, just $28. Congressman Ernest Istook has been trying to even out the research grants, without success.

(Individuals in race; documents; Ernest Istook)

REP. ERNEST ISTOOK: If you have the politically correct disease, the prospects of getting federal funding to help find the cure are 100 times greater than if you have some other disease, even though it may be a much more common disease.

STOSSEL: (Voiceover) Isnít this unfair? Daniel Zingale is executive director of the most powerful AIDS lobby.

(Daniel Zingale)

STOSSEL: When youíre getting 10 times as much money as other diseases, isnít there something wrong?

DANIEL ZINGALE: This is a deadly communicable disease. Itís striking young people. It even threatens to bring down entire nations in some parts of the world. So the scientists take those factors into consideration, and they should.

(Clip from TV commercial)

STOSSEL: (Voiceover) Though Zingale admits the politicians take other factors into consideration.

(Rosie Perez)

ROSIE PEREZ: And I called up all my fabulous friends and said, ëIím going to be at the AIDS dance-a-thon.í

STOSSEL: (Voiceover) Rosie Perez is just one of the star-studded fraternity of AIDS advocates.

(Perez)

STOSSEL: If you have an actor come to Congress, does that make a difference? Will that help people?

ZINGALE: It does. When Elizabeth Taylor came and talked about AIDS, it draws 20/20.

STOSSEL: (Voiceover) And lots of other cameras and senators. It was a packed committee hearing.

(Committee hearing with Elizabeth Taylor)

ELIZABETH TAYLOR: I will not be silenced, and I will not give up, and I will not be ignored.

STOSSEL: (Voiceover) And she was not ignored. Compare this with the hearing where Joan Samuelson testified.

(Taylor surrounded by cameras in committee hearing; Samuelson testifying)

SAMUELSON: My testimony...

STOSSEL: (Voiceover) Most of the legislatorsí chairs were empty.

(Empty chairs)

STOSSEL: What was your hope?

SAMUELSON: That the seats would be full, of course.

STOSSEL: They werenít.

SAMUELSON: And that they'd cry and gnash their teeth and say, "We're going to do it."

STOSSEL: Didn't happen.

SAMUELSON: No, it didnít happen, no.

STOSSEL: (Voiceover) If only she were Miss America.

(Nicole Johnson)

ZINGALE: Hello.

MISS AMERICA NICOLE JOHNSON: Hello.

ZINGALE: How are you?

STOSSEL: (Voiceover) Daniel Zingaleís group, AIDS Action, pays a former Miss America to visit congressmen with him.

(Zingale sitting with Johnson)

SPECTER: So youíre carrying on your crusade to fight AIDS after giving up Miss Americaís crown?

STOSSEL: (Voiceover) Senator Specter seemed very interested in talking to her about AIDS and other things.

(Specter speaking with Johnson)

SPECTER: That's why I came out. I thought you would be wearing a crown.

JOHNSON: Oh, no. Well, actually...

SPECTER: How long did you wear the crown?

JOHNSON: I wore it three times.

STOSSEL: (Voiceover) When Samuelson visits the Congress, sheís constantly reminded that without star power she has little influence. Congresswoman Carol Maloney tells her, if only she could bring some celebrities with her.

(Samuelson; Carol Maloney)

CAROL MALONEY: If Mohammad Ali would come, Michal J. Fox would come...

STOSSEL: Recently she got Michael J. Fox to come to Washington. And sure enough, he got a special hearing before Senator Specterís committee.

MICHAEL J. FOX: I was shocked and frustrated to learn the amount of funding for Parkinsonís research is so meager.

STOSSEL: (Voiceover) There was lots of news coverage and lots of moving testimony.

(Media and Michael J. Fox during hearing)

FOX: With the help of daily medication and selective exertion, I can still perform my job, in my case, in a very public arena. I can still help out with the daily tasks and rituals involved in home life, but I donít kid myself; that will change. Physical and mental exhaustion will become more and more of a factor, as will increased rigidity, tremor and dyskenesia. I can expect in my 40s to face challenges most wonít expect until their 70s or 80s, if ever. But with your help, in my 50s Iíll be dancing at my childrenís weddings.

STOSSEL: (Voiceover) Suddenly, senators were talking about putting more money into Parkinsonís research. Now, if celebrities want to lend their names and faces to support a charity, great, but since weíre talking about deadly diseases and your tax money, shouldnít we expect Congress to focus less on glamour and more on allocating the money fairly? Daniel Zingale of AIDS Action says Congress should just give everyone more money.

(Committee hearing with Fox; various celebrities; Zingale)

ZINGALE: IóI reject the idea that we have to pit the dying against the dying, or the suffering against the suffering.

STOSSEL: But we do.

ZINGALE: We shouldnít.

STOSSEL: (Voiceover) For years, AIDS lobbyists urged advocates for other diseases not to complain about who gets more or less, and most donít. But this winter the American Diabetes Association broke ranks and openly cried foul.

(Demonstrators at rally for AIDS; demonstrators at rally for diabetes in front of Capitol)

UNIDENTIFIED WOMAN: Congress should just stop shortchanging diabetes and fully find diabetes research.

MIKE MALBY: Why do other diseases seem to be getting so much more than we do?

STOSSEL: (Voiceover) Mike Malby of the Diabetes Association says it was a shock to discover that diabetes was getting only $28 per patient when AIDS gets a hundred times more.

(Mike Malby talking to John Stossel)

MALBY: We were flabbergasted at the numbers. The numbers were horrendous.

GROUP OF DEMONSTRATORS: (In unison) Cure diabetes! Cure diabetes!

STOSSEL: (Voiceover) Sixteen million people suffer from diabetes in America, five times more than AIDS and breast cancer combined. Researchers say
diabetes, like Parkinsonís, could be cured sooner if only there were more money available. So what has the Diabetes Association done?

(Diabetes rally; Nicole Johnson meeting members of Congress)

JOHNSON: Hi, good morning.

UNIDENTIFIED CONGRESSMAN: Hi. Nice to see you.

JOHNSON: Good to see you, too.

STOSSEL: (Voiceover) AIDS was last yearís Miss America, so diabetes brought in the current Miss America.

(Johnson shaking hands with congressman)

CONGRESSMAN: Congratulations.

JOHNSON: Well, thank you. You, too.

MALBY: (Voiceover) People find time on their schedules to meet with her. We met with the speaker of the House. We met with the majority leader.

(Johnson meeting congressman)

STOSSEL: (Voiceover) Other diabetes groups use their celebrities. The Juvenile Diabetes Foundation brought sick children to Congress, accompanied by Tony Bennett and Mary Tyler Moore.

(Rally for diabetes; Tony Bennett and Mary Tyler Moore testifying at Congressional hearing)

SPECTER: Probably best known for her television roles in ìThe Dick Van Dyke Showî and ìThe Mary Tyler Moore Show.î

STOSSEL: (Voiceover) Committee Chairman Specter admits that fame and photo opportunities sell.

(Specter at congressional hearing)

SPECTER: (Voiceover) Christopher Reeve made a trip to the White House and came back with a promise of $10 million from the president.

(Christopher Reeve meeting President and first lady)

STOSSEL: Is that how it should work?

SPECTER: Itóhow should it work? Yes, I think thatís a fairóa fair way.

STOSSEL: So whoever panders most to you gets the most money?

SPECTER: Whoever panders the most...

STOSSEL: ...gets the most money.

(Voiceover) When I began my interview with Senator Specter, he made it clear that he and other politicians greatly influence NIH funds.

(Stossel talking to Specter)

SPECTER: Well, the subcommittee took the lead in establishing a separate unit for women, and the National Institutes of Health followed that. We are having a special hearing on prostrate cancer because the chairman of the full committee has had prostate cancer and weíre having a hearing on it.

STOSSEL: But because the chairman has prostate cancer you have a hearing, I mean...

(Voiceover) But when he realized our story is not about how great it is that he gets money for this or that disease, but that weíre questioning why some diseases get so much more than others, he changed his tune.

(Specter; Reeve; rally for AIDS)

STOSSEL: Two thousand dollars per AIDS patient versus $20 per diabetes patient. Isnít something off?

SPECTER: Well, theótheóthe decision as to how much money is spent is made by the National Institute of Health. It is not made by the Senate or the House or the Congress.

STOSSEL: But under your control, you oversee them.

SPECTER: The decisions are made by the National Institute of Health.

STOSSEL: (Voiceover) If thatís true, why are so many politicians so eager to take credit for getting people money? Hereís the president being heckled by AIDS activists.

(President speaking at human rights campaign)

PRESIDENT BILL CLINTON: Protecting the civil rights of all Americans...

UNIDENTIFIED MAN #1: People with AIDS are dying!

CLINTON: Wait, wait, wait, wait, wait. I would have been disappointed if you hadnít been here tonight. Iím getting kind of used to this. People with AIDS are dying, but since Iíve become president, weíre spending 10 times as much per fatality on people with AIDS as people with breast cancer or prostate cancer.

STOSSEL: (Voiceover) Am I missing something? Why is it a good thing to spend 10 times more on AIDS than on breast cancer or prostate cancer? Or, for that matter, 25 times more than on Parkinsonís, which kills more people? Everyone supports trying to cure AIDS and breast cancer, but Joan Samuelson wonders, why are those lives are so much more important than the people who have
diseases like hers. Isnít it important, she says, to help us, too?

(President Clinton speaking; Samuelson in bed)

SAMUELSON: What higher national priority could there be?

(Voiceover) We go and rescue people in foreign countries because their lives matter, because itís the moral thing to do. Well, this is a moral thing to do, too.

(Samuelson sitting outside capitol building)

FORD: After Michael J. Fox went before Congress, he made another appeal for Parkinsonís research on ìGood Morning America.î Those appearances generated thousands of messages of support to Senator Arlen Specterís office. And as a result, thereís now a push in Congress for more Parkinsonís research money in the next budget. Weíll be right back.

http://abcnews.go.com/onair/2020/transcripts/2020_991011_disease_trans.html


ACTIVIST RESPONSE:

I saw part of the show and was appalled. Two basic problems were stupid
math and idiotic perceptions of the value of research. Chung and Stossel
seemed to think that federal funds should be allocated to diseases in
proportion to the relative numbers of death each causes. But everyone
eventually dies, and most deaths are the result of the failure of the
heart or lungs. There was no recognition that an infectious disease has
implications that other health problems may not have:
early research can
prevent an infectious disease from becoming the top killer.

Nor was there a discussion of the value of reseach on retroviruses for other diseases
that are already among us. The reporters also seem unaware that years lost
to life expectancy is a relevant factor:
a disease that is increasingly
prevalent among young people has different implications from those
which strike the elderly.
Zingale alluded to a couple of these points, but
in a way that didn't bring them home to the interviewers or the reporters.
Parity in research according to mortality rates is not a reasonable goal:
we need to be able to explain why it's not.

Jeanne

 

I'm sure [the producers] have a decent defense of how and why
Connie Chung was allowed to pit HIV research against Diabetes, breast
Cancer, Parkinson's and whatever else come after I got pissed off and
stopped reading the transcript.

There are easy defenses to all of these criticsms.
1. Medical research anywhere helps medical research EVERYWHERE..
2. HIV disease doesn't receive the money it needs, so we are well aware
that many other diseases don't recieve the funds necessary. WE STAND
WITH ALL MEDICAL RESEARCH Receiving adequet funding.
3. *IF* those who would shamellessy pit those with HIV disease against
other sick people would support UNIVERSAL HEALTH CARE with emphasis on
prevention and full complete coverage for everyone, then there would be
a lot less need to try to pit sick people against each other from an
inadequet pot of funds that should be greatly increased from sources
that do not cause more human suffering from those least able to afford it.

This is an opportunity for education. What in the hell is wrong with
connie Chung running bullshit like that? I can tell her where to get the
money for all kinds of disease research. CORPORATE WELFARE!!! Stop
giving the goddamned McDonald's hundreds of thousands to market their
filth and beanie babies in CHina, and put that and a lot more into
medical research.

I could yank a fist full of her hair out.

For the Cure, Barry


For those who would like to tell John Stossel, the producers at 20/20 and
ABC what you thought of their story on biomedical research funding and why
AIDS research deserves its 1.8 billion dollar appropriation:

Contact:
John Stossel: stossel@abc.com
20/20: 2020@abc.com
ABC News: netaudr@abc.com

If you are disappointed with the 20/20 story on AIDS research funding call
ABC and tell Connie Chung, Barbara Walters and John Stoessel about it at
212-456-7777.


see also:

MEDIA FRENZY: Nushawn Williams

Media Frenzy

 

MEDIA IRRESPONSIBILITY: The New York Times
"AIDS Exceptionalism"