But the way the NIH’s budgetary pie is sliced may be changed by the presence of Doc Hollywood: Michael J. Fox. For eight years, Fox — who jump-started his career in the “Back to the Future” movies and currently stars in the ABC sitcom “Spin City” — hid his Parkinson’s disease from the public, passing off the tremors as Lyme disease or fatigue. When he finally came out, sufferers of Parkinson’s breathed a sigh of relief. Maybe with a star on board, they could get the notice they needed to help increase the funding for treatment and research.
On Sept. 28, 1999, an impassioned Fox spoke before Sen. Arlen Specter and the Senate appropriations subcommittee. “What celebrity has given me is the opportunity to raise the visibility of Parkinson’s disease and focus attention on the desperate need for more research dollars,” declared Fox. “I was shocked and frustrated to learn the amount of funding for Parkinson’s disease is so meager. Compared with the amount of federal funding going to other diseases, research funding for Parkinson’s disease lags far behind.”
When members of the Parkinson’s Action Network (PAN) had spoke before the House Appropriations Committee, almost half the seats were empty. But when Fox appeared, the House was full.
Fox wasn’t the first celebrity to stump before Congress in the hope that a disease that afflicted them or loved ones would be awarded an increase in federal funding. After viewing videotaped testimony from actor Christopher Reeve, the Senate Health Committee in March approved a $1 surcharge on motor vehicle fines to pay for spinal cord research. Reeve, who was traveling and unable to appear in person, told lawmakers that the surcharge would raise more than $2.6 million a year for spinal cord research.
And then there was the appearance of the glamorous Elizabeth Taylor, who spoke out poignantly for HIV and AIDS research dollars. Her pleas were bolstered by the work of AIDS activists like the group Act-Up, who took to the streets, marching and disrupting political meetings. The dividend: well over a billion and a half dollars of NIH money distributed in 1998. And the fact that famous fixtures like Rock Hudson, tennis star Arthur Ashe and Robert (Mike Brady of “The Brady Bunch”) Reed had died of AIDS — or that basketball star Magic Johnson has the disease — didn’t hurt when it came to opening the federal pocketbook.
But celebrities are just part of the whole lobbying strategy. As PAN’s Michael Claeys points out, stars cannot do it by themselves. “The impact a celebrity has for one disease or another does help to make the issue more real. It’s helpful, but not the whole package,” he explains.
The grass-roots package includes letter writing, visits by non-stars to Washington to meet with office holders and continued pressure by constituents on their elected officials, which in the case of Act-Up was substantial. Famous folk are just the icing on the cake — but if fans get motivated behind a star and lobby Congress, more government dollars might be dropped on that celebrity’s favorite cause.
“If you’re not the squeaky wheel, you’re not getting the funding,” says Parkinson’s Action Network’s Phyllis Rosenfeld. To that end, actors and others with illnesses have been trotting down the red carpet to meet and greet the press and Congress.
The executive director of the Autism Society of Los Angeles, Frank Paradise, has worked for a variety of fund-raising agencies over the past 25 years, including AIDS Project Los Angeles. He explains, “Actors traditionally never really could be used to promote fund-raising, until the entertainers [like Elton John] came out to do concerts. That was the forum for actors to come out and speak.” But, he continues, there is still some hesitation. “It’s real easy for celebrities to come out for a disease when their friends are touched. It’s a harder pull when it comes close to home. ‘My mother or my aunt has it, but I won’t say I have had a mastectomy toward helping breast cancer research,’ is the commonly held position.”
Fear of losing one’s livelihood because of an illness often keeps celebrities in the closet over their afflictions. David Lander, best known as Squiggy from the 1970s sitcom “Laverne and Shirley,” hid his multiple sclerosis for 15 years, worried that he would lose jobs if his illness became public. On several occasions he was fired from a show and confronted by producers, he says: “They thought I was drunk, and I was relieved when they told me they thought I was an alcoholic. Hey, I thought, let them think I had a drinking problem. At least they didn’t know I had MS!”
Now Lander traverses the fund-raising circuit, appearing around the country for the MS Dinner of Champions, making personal appearances and attending MS conventions — even stopping in to visit the laboratories that manufacture the drug he takes to help control his symptoms. He looks forward to dropping in on Congress next year to help increase MS research.
The now-outspoken Lander has a few words of wisdom for diseased celebrities — especially the rather morose MS-er Montel Williams, who believes multiple sclerosis is a death sentence. “When you have the bully pulpit, you have to be careful. People will listen to you because you’re that guy on TV.” But, he also stresses, by putting his familiar face on MS, he has helped to raise money from the private sector and to show that MS is not a death sentence at all.
Lander jokes, “I got MS as a career move.” The fully mobile actor also makes a point of letting people in the industry know that his diagnosis was that he would never walk again. “When I tell them that my first thought was, ‘How many roles are there for a 36-year old Jew in a wheelchair?’ they get these looks on their faces like, ‘What if someone said that to me? What would my future be?’”
The “What if it were me?” thought prompts many celebrities to pump up the volume for research into diseases like AIDS, breast and prostate cancer as a prophylactic. However, one hidden killer lags far behind in funding and star power. Hepatitis C infects one in 50 Americans, yet receives only one-tenth the per-patient funding going to HIV/AIDS research. Naomi Judd is hoping to change that. She is spokeswoman for the American Liver Foundation and has founded her own organization, the Naomi Judd Foundation.
A country music queen, Judd was working as a registered nurse in 1983 when she pricked herself with a hepatitis C-infected needle. The retrovirus took hold, and by 1985 the singer was experiencing symptoms. Then, after a liver biopsy in 1995, she endured a successful drug regimen.
“I’m sort of the poster child for hepatitis C,” explains Judd, an admitted clean freak. “I’ve never smoked a cigarette, I’ve never drank a beer, I’ve never done IV drugs. I’ve been monogamous. I’ve never had a blood transfusion, I don’t have tattoos, I have no pierced body parts and I’m a health care worker. I’m female, I’m white, I’m middle class, I’m reasonably intelligent.”
Judd is hoping her image will turn Congress into liver lovers, since the hep C epidemic needs to be eliminated and the funding increased. And despite the disease’s presence throughout the United States and around the world, not a lot of folks are willing to step to the plate and speak out, no doubt because hep C is falsely perceived as a disease that affects only those who are unlike Judd — the pierced, the promiscuous and the perverse.
Drugs and alcohol came to a political forefront when Betty Ford admitted she had a drinking problem, and went on to found the Betty Ford Center. Nancy Reagan went one better, donning a flak jacket and storming a drug house with DEA agents in a war against drugs photo-op. Attempts to save America from drugs and alcohol have beaten a timeworn path to Capitol Hill, but when it comes to saving the children, celebrities prefer to focus on illnesses that affect kids.
One of the most devastating childhood illnesses is autism. Frank Paradise says that celebrities have their value in different ways. “They can give you things for auctions, they can do PSAs” (public service announcements). But others go the extra mile. “Actor Anthony Edwards [of "ER"] has an autistic child. He’s taken an intellectual tack — testifying for more research and funding from Congress. In his own way, he’s taken the cause to another level. But, again, there aren’t very many who would do that.”
In fact, celebrities’ changing lifestyles can conflict with fund-raising efforts. Case in point: Sylvester Stallone. While he was married to his first wife, Sasha, Stallone was active in working for autism, doing benefits and making PSAs. Since the superstar divorced the mother of his autistic child and remarried, he has ceased fund-raising for autism, according to Paradise. “With Sylvester Stallone it’s a tug of war. He did a couple of benefits and we haven’t heard from him since he split up with Sasha. Sasha was more helpful. When Sasha was pushing him, Sylvester Stallone did PSAs and a lot of fund-raisers for [autism].”
And Stallone isn’t the only star making himself scarce around autism. “There are probably more celebrity kids with autism than we know about,” speculates Paradise. Stars in denial fear image-ruining P.R. when affliction hits, and often decline to reach out to an organization.
PAN’s Rosenfeld contends that with the film and media culture, the public feels that they know somebody who has come into their living rooms. “When something happens to them, it’s the tribal instinct. This gives an opportunity for people to feel connected to a famous person. The statistics and numbers don’t mean as much until you put a face on it.”
By putting their best faces forward in Congress, celebrities hope to have an effect on their pet afflictions — not just by meeting the policy makers, but by taking a public stance. PAN’s Claeys explains that Michael J. Fox’s appearance, like that of other celebrities, served a two-fold purpose, “It’s helped raise awareness and publicity. Politicians are aware of publicity. And while Michael’s visit hasn’t translated into specific money yet, it was a tremendous help. Politicians are people, and they tend to be more interested when celebrities speak out. The attention of the press and public is brought into greater focus. And there are those voters who are now motivated and focused. And that will get attention. Politicians have two jobs, to serve the public interest and to stay in office.”
And nothing does both those jobs better than fighting sickness while shaking hands with stars. Charles Robbins — press secretary for Sen. Arlen Specter, R-Pa., who chairs the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education and Related Agencies — says that he has seen the effect of celebrities on hearings. “There is in fact a greater turnout, the media comes out.” And while celebrities help focus attention on an issue, Robbins says, “You can’t make the jump that their appearances help increase funds for a specific illness.”
But celebrities do help increase the number of cameras and microphones that appear. When Specter came to Beverly Hills for a 1996 field hearing on how best to allocate federal medical research dollars, Specter acknowledged the camera crews from several television stations and syndicated shows like “Extra.”
“We had a similar hearing on this same topic in Philadelphia, and it didn’t attract much attention. But we have a different situation today,” he said in a UPI report. Along with meeting Paula Poundstone to discuss AIDS and Victoria Principal to talk about about domestic violence, the senator heard from “Seinfeld’s” Jason Alexander, “China Beach’s” Dana Delany and Bob Saget, star of “Full House” — all three of whom wanted to make sure the senator allocated funding for research into scleroderma. Scleroderma, which hardens the skin and affects internal organs, afflicts Alexander’s sister and caused the death of Saget’s sister. Saget had just completed producing and directing a TV movie “For Hope,” loosely based on his sister’s battle with scleroderma, that starred Delaney.
The celebrity show of force was important, said Alexander in the UPI article, because scleroderma was such a little-known disease — despite the fact that it affects 550,000 Americans, most of whom are women in their child-bearing years. “The people who gather funding are not well versed in [scleroderma], so you kind of need people to draw enough attention to it. And in this country, in this day and age that tends to be celebrities. We are all personally affected by it. It’s a personal concern.”
That day in 1996, Sharon Monsky, founder of the Scleroderma Research Foundation said that the effect celebrities have is usually intangible. “But today there was real money on the table, and these guys made a difference. [Specter] has power to direct money to research that will literally save many, many lives. And these celebrities helped us make an impact.”
And what an impact they made. Eighteen months later, in December 1997, the first specialized center of research in scleroderma was established at the University of Texas Health Science Center in Houston through a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, part of the National Institutes of Health. Total funding for the four-year grant was $3.5 million, which includes support from the NIH Office of Research on Women’s Health.
Others argue that funding shouldn’t be affected by celebrities or personal interest. Rep. John Porter, R-Ill., is the chairman of the House Appropriation Subcommittee on Labor, Health and Human Services and Education and Related Agencies, and thus Specter’s counterpart in the House. Though his wife suffers from diabetes, Porter refuses to earmark specific funds for research into that or any other disease. “As a matter of principle, congressman Porter will not set aside funding of research into specific afflictions, even though it could impact his wife’s illness,” says spokesman David Kohn. Additionally, states Kohn, Porter feels that politics should not be inserted in the spending of NIH research dollars; he believes that the NIH has a peer review process for research grants, and that the institutes understand how best to spend their funding. Porter strongly opposes specifying how the NIH should spend its budget, feeling that to do so would interfere with the NIH and its processes: “Congress should not put political judgment before scientific and medical judgment,” Porter says.
“But once a bill goes from the House and gets to the Senate,” explains Kohn, “Earmarks get added. There is real human suffering at the heart of [the senators'] efforts. It’s not just vanity. With the best of motives, senators work on issues that affect them, their constituents or members of their families. They try to make a difference and advance the work within a specific disease. The constituent factor plays into any decision by Congress, but the celebrity factor is overblown.”
“It’s an actual reality that celebrities are given an odd kind of royalty in our world,” commented Saget at 1996 congressional field hearings in Beverly Hills. “And this is one of those times that I say, ‘Thank God for celebrity,’ because you get people from government who actually sit down and listen to you because they like you. They know you’re at least pseudo-intelligent. You may not be a genius, but at least they acknowledge your presence.”
And that presence can resonate far beyond the television set, into research labs and hospitals around the nation.
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MATCH THE STAR WITH THE SICKNESS
The following celebs are either afflicted with and/or raise awareness for a specific disease.
| 1. Kenny Rogers |
a. HIV |
| 2. Mary Tyler Moore |
b. autism |
| 3. Ann Jillian |
c. erectile dysfunction |
| 4. Doug Flutie |
d. hepatitis C |
| 5. Debbie Reynolds |
e. diabetes |
| 6. Magic Johnson |
f. breast cancer |
| 7. Bob Dole |
g. osteoporosis |
| 8. Muhammad Ali |
h. Parkinson’s |
ANSWERS: 1d; 2e; 3f; 4b; 5g; 6a; 7c; 8h
38 years of self-love 
TV’s golden age of opening credits 
Anthony Shadid yearned for home 
When I was captured by Gadhafi’s forces 
Rush Limbaugh, secret Democrat 
The factory jobs aren’t coming back 
Jack Donaghy fears the 99 percent 
Tim and Eric’s comedy of repulsion 
Who is Newt’s sugar daddy really helping? 
“Eastbound and Down” heads to the Redneck Riviera 
