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... 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/ . ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn