Disease Lobbies: Where, How of NIH Spending Ward Sinclair’ Washington Post Staff Writer If code names have meaning, then a terrible thing has happened. Ameri- can government, especially its gullible element on Capitol Hill, has been cap- tured, béund and ‘gagged’ bya silent invader. Consider the names: the cancer ma- fia, the health syndicate, the benevo- lent plotters, the ‘Laskerites, Mary’s lambs, Mary's angels. There are more. They are terms . used to describe one of the most re- markably successful, yet least-known components of national politics—the public health lobby, or, as its various parts are sometimes wryly called, the disease lobbies. : Many of President Carter’s budget proposals for public health spending in fiscal 1981, even though the presi- dent may not know it, are based on zealous evangelism of these groups. One. of the areas where this shows upmost clearly is‘in Carter's proposal to spend $3.6 billion on the biomedical research programs of the Natfonal In- stitutes of Health. NIH and. Carter, adniinistration -offi- cials have decided how much’ ‘they would like to spend. Members of Con- gress and their staff assistants will de eide how much.NIH can spend. The public health lobby will play a key role in influencing where and how. the money will be spent. Long before Carter was president, the health lobby—a huge, shifting and hard-to-define army of citizens and .or- os , WO oe rene eee Section 9, Paragraph’7 “NO MONEY SHALL BE DRAWN FROM THE TREASURY, BUT IN ==] __CONSEQUENCE OF ==] APPROPRIATIONS MADE “ral BY LAW....” | $24 tat wT nea we ee a OBS A ae pee ganizations sworn to battle individual diseases—had made its imprint on of- ficial Washington. Rep. William H. Natcher (D-Ky.), chairman of the House Appropriations subcommittee for Labor-HEW, put his finger on it at an NIH hearing the other day. He looked down at Dr. Donaid Fred- tickson, director of NIH, and said, “Doctor, we will be approached by hundreds of advocates, How can we defend this budget?” Fredrickson answered, “We will be able to fund good research in all of these areas. Their equity is protected. We need these people working upon us.... We area public body, and we hear from them, too.” As the congressional process works, the Senate and House Appropriations subcommittees, having heard NIH ot- fictals defend their budget in recent weeks, now are turning their ears to- ward public witnesses. The first will appear Monday before Sen. Warren G. Magnuson's Senate panel. It will be almost like a factory. Principal groups are limited to less than 10 minutes each to try to influ- ence the appropriation. Statemencs will be submitted for the record. Questions will be brief. The appear‘ ance of profound thinking may be co- incidental. In many ways, the process is too perfunctory and too overloaded to be meaningful. Legislators’ time is lim- itad, the witnesses wid'want to*testity too. numerous to accommodate, the ca@uses and needs ¢0 be ‘dealt with overwhelming. . The range of advocacy is hugé. lt includes the powerful American _ Cancer Society, which would lI{ke to see the National Cancer Institite get more than the $1,007,800,000 President Carter is proposing for fiscal 1981. Conkress, with prompting by the anti- cancer lobby, has regularly increased NCI research moey in the past. . And it includes smaller groups, for example, the enemies of Colley’s ane- mia, a severe inherited blood disorder that principally affects person of Greek, italian and Oriental ancestry. Congress, again with prompting, has pressed the National Heart, Lung and Blood Institute into research. in that area. . . Make no mistake about the influ- ence of a group like the Colley’s Ane- mia Foundation. Congress last year in- structed the NHLBI ta produce more public information about the disease. When Dr. Robert 1. Levy, institute di- rector, last week reported progress on that front, Rep. Silvio O. Conte (R- Mass.) was elated. “All my Italian and Greek friends will be glad to hear that," Conte said. There was a ripple of chuckling in the subcommittee hearing room but Conte was toliching the heart of the matter. Esoteric investigation and dramatic discovery have made the 11 institutes of NIH what HEW Secretary Patricia Roberts Harris calls “the jewel] of our national research crown.” They exist for one reason: people like Conte's friends. The multimillion-dollar budget ar- guments that occur each year when NIH goes before Congress always hinge on people. The difficulty is that there are many elusive diseases, many ailing people, many conflicting ideas about how to mount the war. So politics is practiced. The disease that can be depicted as the most vile, the advocates who can capture the most legislative ears and individuals who leave the sharpest impressions win the appropriations battles. The struggle for public health dol- lars has become so intense that part of the disease lobby, trying to hold down the chaos, has organized itself 5 This is another article in an occasional ‘series following a sin- gle proposal—the budget for the National Institutes of Health— through the congressional ap- propriations process. into the Coalition for Health Funding, 60 national organizations that watch the budget like hawks. The coalition annually produces a complex and detailed alternative budget, typically recommending much more for public health spending than presidents propose. This year’s alter- native, for instance, calls on Congress to add $330 million to Carter's NIH re- quest. In this year of general pressure for more budget cuts, the coalition’s thinking seems unlikely to get very far. But it will have, as it usually does, an impact. “We think it provides Congress a mechanism to understand the programs we are interested in,” said Jay B. Cutler of the American Psychiatric Association, who heads the coalition. That, of course, is one way. But there are other ways—individual but- tonholing of congressmen and the or- chestration of ideas. Figures such as philanthropist Mary Lasker, columnist Ann Landers and actress Jennifer ‘Jones, whose names are legend at the appropriations subcommittee, have converted that to a fine art, - Lasker is the spiritual godmother of the sprawlitg disease lobbies, a friend of presidents’ and senators and con- gressmen, who has spent the past 40 years promoting the idea of greater federal spending against disease. The foundation created in her Name and that of her late husband, advertising executive Albert Lasker, honors medical researchers for scien- tific advances, The Laskers have con- tributed heavily to the election cam- paigns of the congressional friends of health research. . Mrs. Lasker was a central player be- hind the surge of congressional spend- ing on NIH during its “golden” years of the 1950s and 1960s. One disease af- ter another got special attention, Con- gress earmarked money and new in- stitutes were created as she made her persuasive rounds. . Thre is more to her style and he influence than Mrs. Lasker would like a listener to belleve, but she makes an important point about political proc- ess and the way Congress appropri ates money. : “Congress only responds to what it is told,” she said last week. “It is very hard for people who are well and dy- namic to imagine the plight of those who are ill, . “I feel very frustrated that I and others are not able to do more,” she said. “But I’m just an individual citi- zen petitioner, That’s all I am, but I do try. I would welcome more citizen petitioners. We have to go and see the congressional people and remind them of the needs.” Mary's Angels, they’re called.