... continued from part 1

The next step in my education came just a few weeks before the White House
party, at a big dinner honoring Abe Pollin, owner of Washington's pro
basketball and hockey teams, whose wife, Irene, was Milly's friend and
former social work colleague at the Neurology Center. The Pollins arranged
for us to sit with Abe's political adviser, Washington health lobbyist
Terry Lierman, who proceeded to completely demystify medical research
politics.

Lierman told Milly and me that diseases were allocated research money based
on the clout of their advocates -- in the White House, in Congress, in the
media and public opinion, and within NIH and the scientific community.

Disease researchers who were receiving the most money one year had the best
chance of getting more the next year, sometimes regardless of the
scientific merit of their proposals. Parkinson's was bringing up the rear,
he said, and probably would stay badly funded unless the whole of NIH got a
major boost in funding.

Lierman also revealed to us that Bill Clinton, though he was helping AIDS
and breast cancer research, was giving short shrift to every other disease
studied at NIH, not just neurological diseases.

This news stunned me, but it had credibility because Lierman was a
Democrat. It was news that the public was unaware of -- something I could
definitely write about, I said.

Now, as we moved slowly through the receiving line that snaked from the
cavernous main-floor receiving room of the White House, down a stairway and
through a ground-floor hallway, Milly rehearsed what she planned to say:
"Mr. President, I love the two of you. I think you're great. I tell Morton
that all the time. I tell him to write nice things about you. I want to
say, I have Parkinson's disease, and there isn't enough money being spent
on research. I hope you'll do something about that."

She repeated the speech two or three times. I was ready to cite some
figures from Samuelson's disparity chart and tell the Clintons that
Parkinson's was a disease that could be conquered soon with an extra effort.

When we reached the Clintons and were introduced by a military aide, Milly
started, "Mr. President, I want to tell you something. I have Parkinson's
disease . . ." Then she lost track. She turned to me, "Morton, what do I
want to say?"

I, even less articulate, hiked my thumb into the air and blurted: "Increase
brain research." Clinton just nodded, but Mrs. Clinton chimed in, "Oh, wait
till we pass health reform. We're going to do a lot!"

You move on fast in these receiving lines. That's all we got to say. I felt
embarrassed that I'd been so frozen-headed. But I muttered to Milly as we
walked on, "Well, you've just been lied to by the first lady of the United
States."

There was nothing in Mrs. Clinton's health care reform plan for
neurological research, or much of anything at all for medical research. To
make matters worse, the Clinton budget released the following February
contained a mere 0.5 percent net increase for neurology after inflation.
For NIH as a whole, Clinton requested a 4.7 percent increase, only 1.7
percent after inflation.

For the next year, fiscal 1995, Clinton was proposing less of an increase
than had been enacted for the previous year, with the biggest increase
going for just two favored diseases -- breast cancer and AIDS.

Clinton had angered the gay rights movement, which supported him in the
1992 campaign, by failing to lift the ban on gays serving in the military,
instituting the policy of "don't ask, don't tell" instead.

However, in an apparent effort to mollify gays, he increased the AIDS
research budget by 20 percent in his first year in office.

In the meantime, women's groups were legitimately angered that breast
cancer research was underfunded, and Clinton responded with a 33 percent
increase in fiscal 1994 and another 28 percent the following year.

More than one conservative Republican we visited looked at Samuelson's
disparity chart, expressed sympathy with our cause, and declared, "We can
get the money for Parkinson's from AIDS." A few members added, "Preventable
disease," referring to AIDS. I confess, I did not argue with them.

For four years a newly energized Parkinson's community rallied around the
Udall bill, named after Mo Udall, the longtime chairman of the House
Committee on Interior and Insular Affairs who was diagnosed with
Parkinson's in 1979.

One celebrated effort was mounted by the Tucson real estate investor Bob
Dolezal to get Arizona's senior senator, Republican John McCain, to support
the bill. Diagnosed with Parkinson's in November 1992, Dolezal first wrote
to McCain in 1993. He got back a form letter thanking him for his views. He
shifted his attention to Rep. James Kolbe (R-Ariz.) and gained his support
rather easily. Then he turned back to McCain. His mail and phone calls
started getting answered -- impatiently -- by a particular McCain aide.
Dolezal bombarded him with correspondence.

Finally, in March 1996, Dolezal exploded in an e-mail that ended: "One can
reach one of three conclusions: The NIH is stonewalling and doesn't want
[Parkinson's funding] data made public, that the request of the senior
senator from Arizona has been cavalierly disdained by NIH; or that the
senior senator from Arizona never seriously pursued this matter, and really
doesn't give a damn. Which one gets your vote?" This outburst had
consequences, short- and long-term. Somehow word got back to the University
of Arizona, which promptly severed connections (since restored) with the
Tucson chapter of the American Parkinson's Disease Association, which
Dolezal headed.

That response not only inspired Dolezal to launch a statewide campaign in
Arizona's Parkinson's community to work on McCain but persuaded him to fly
to Washington to visit McCain personally. He took along Brad Udall, Mo's
son and lookalike, who was a board member of PAN, and Mary Helen Davila, a
Parkinson's activist and sufferer from Phoenix. Davila told McCain what
Parkinson's was doing to her -- and cried. Dolezal launched into the
Parkinson's case. McCain interjected that he did not like to earmark for
specific diseases. Dolezal kept spouting statistics and arguments.

Suddenly McCain put up his hand. "Okay, that's enough. I'll co-sponsor the
bill." This time Dolezal began crying. "It was one of the greatest
experiences of my life," he told me.

When Oregon's Mark Hatfield retired in 1997 after 30 years in the Senate,
it became crucial for the Parkinson's movement to find an influential
Republican to carry the cause. Sen. Paul Wellstone of Minnesota, both of
whose parents had died with Parkinson's, was the lead Democrat. In January
1997, Dolezal wrote to McCain, suggesting that it would be especially
appropriate for him to take the lead given his friendship with Mo Udall.
Within a week Dolezal got a call from McCain's office with the word: The
senator would do it.

On September 3, 1997, McCain and Wellstone offered the measure as a floor
amendment to the annual appropriation for the departments of Labor,
Education, and Health and Human Services. There was a brief floor debate in
which McCain said that "there is a gross inequity here that needs
rectification," citing figures from Samuelson's disparity chart. The vote
to approve the Udall bill was overwhelming, 95-3. However, the Senate fight
was not yet over. The next day, antiabortion Sens. Dan Coats (R-Ind.) and
Don Nickles (R-Okla.) planned to amend the Udall bill with language
reviving the Reagan-Bush ban on federal funding for fetal tissue research.
Samuelson and PAN's policy coordinator, Mike Claeys, were at PAN's office
in Santa Rosa, Calif., and from there spent all night soliciting statements
from scientists on the importance of the research and faxing material to
friendly senators in Washington. The next day the Coats-Nickles amendment
was defeated, 60-38.

The Udall bill survived a House-Senate conference on the Labor-HHS
appropriation. Its passage was hailed by Parkinson's advocates as a moment
of triumph. Indeed, we were invisible no more.

But the passage of the Udall bill did not guarantee that one cent more
would be spent on Parkinson's research. Even though it passed as an
amendment to an appropriations bill, the Udall bill was not an
appropriation; it simply authorized NIH to establish a Parkinson's-related
research program.

Where should the money come from? My first instinct -- based partly on my
knowledge of the funding disparities, and partly perhaps on prejudice --
was to take it away from HIV/AIDS. It struck me as deeply unfair that the
government was spending something like 40 times the amount per victim on
AIDS as on the disease that was killing my wife.

In 1996 I began working on a PBS documentary, "The Politics of Medicine,"
which ran on the network in October 1997. One of the first people I
interviewed was the AIDS activist (and patient) Gary Rose, who had once
attacked PAN over the disparity chart, calling it "AIDS-phobic." When I
asked him about that, he accused me and PAN of telling Congress that the
plight of AIDS victims was their own fault, that the money should be given
to Parkinson's. He said that, after watching so many friends die, he found
that argument repulsive. And to put the blame on the victim, whether the
disease is HIV or lung cancer, is wrong.

"Most people don't have a choice about getting HIV-infected," he said. "I
didn't have a choice. To say to someone, 'You should have worn a condom,'
just think about that: If HIV were a disease primarily of middle-aged,
white heterosexual men . . . you tell the entire community . . . 'You have
to wear a condom for the rest of your life. Period. And if you don't, it's
your own fault if you die.' That would not wash if you were telling those
people that . . . Human beings like to have sex . . . and they like it to
be natural, not negotiated."

As I sat across from him, I felt myself getting furious at the implication
of his argument. I burst out at him: "Well, as a citizen and as somebody
who's married to someone who has Parkinson's, the way I look at it is, I
see a community that has a preventable disease. It has mobilized itself
very carefully, using Hollywood and the gay community, has impacted
Congress, has gotten an enormous amount of money spent on it . . .

"And the consequence of this is that an enormous amount of money . . . has
been devoted to this group's disease . . . The diseases that I care about
are defunded, underfunded. Why am I wrong?"

He burst back, underscoring how AIDS had ravaged "homosexuals, drug
addicts, poor black people . . . If the most condemned sections of American
society can pull together and do the remarkable and miraculous thing that
we've done . . .

"We didn't have any power. We didn't have any money. We had nothing. We had
nada. No one would talk to us. If we can build that out of those garbagey
tools, I don't understand how anybody in good faith can now come after us
and say, 'You really don't deserve your success. You could have stopped it.
You can stop it now . . .' "I'm just incredibly offended by being condemned
for success that has cost me every person I cared about in my entire life.
This epidemic has decimated my entire peer group. Everybody that I've
worked with, cared about, lived with. And out of that pain, we've developed
a movement, a process where we could cure this disease in 10 years. And I
have to have somebody coming after me and saying, 'You don't deserve that?
Give some of it to us.' I'm sorry, I don't think that's moral."

He finished me off with a challenge: "Are you going to stop working in
television and become a full-time Parkinson's advocate? When you've done
that, when thousands of other people, including people with Parkinson's,
have done that, have given up your lives to find a cure, then you come back
to me and say, 'You have to give up some of yours.' "

It was a powerful rebuttal, but Rose made an even stronger argument that
convinced me that there was no future in trying to rob AIDS to help
Parkinson's.

Even if the money were cut from AIDS research, he said, it wouldn't go to
Parkinson's; it would go to the next most powerful disease.

He cited breast cancer research, which was being pushed by a powerful
coalition of women's groups and the White House, and diabetes, at the time
the favored disease of Republicans because House Speaker Newt Gingrich's
then-mother-in-law suffered from it.

I knew instantly that Rose was completely correct and that the funding
definitely had to come from somewhere else.

continued in part 3 ...
janet paterson: an akinetic rigid subtype, albeit perky, parky .
pd: 54/41/37 cd: 54/44/43 tel: 613 256 8340 email: [log in to unmask] .
snail mail: 375 Country Street, Apt 301, Almonte, Ontario, Canada, K0A 1A0 .
a new voice: the nnnewsletter: http://groups.yahoo.com/group/janet313/ .
a new voice: the wwweb site: http://www.geocities.com/janet313/ .

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