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[IP] NIH funding article

I've copied an article that ran in the Washington Post concerning the
disparity in funding at the NIH.  It's a long article; advanced
apologies to those non-Americans that this isn't relevant to.

Kayla's mom

> Today the Washington Post (circulation 800,000) ran a full-length feature story about diabetes
> advocates fight for a cure.  It's great to see the media finally taking notice of our
> aggressive fight for a cure!
> You can download the article and a sidebar article at the following addresses:
> www.washingtonpost.com/wp-srv/WPlate/1998-12/15/005l-121598-idx.html
> www.washingtonpost.com/wp-srv/WPlate/1998-12/15/006l-121598-idx.html
> I have also included the text of the articles to this message for those of you without access
> to the internet.  Keep up the great work!  It's making a difference.  Thank you for your
> support of diabetes advocacy and the American Diabetes Association.
> Joe LaMountain
> National Director of Advocacy
> American Diabetes Association
> email @ redacted
> (f) 703 549-8748
> ***********************************
> Crusading for Cash Patient Groups Compete For Bigger Shares of NIH's Research Funding
> By Judith Havemann
> Tuesday, December 15, 1998; Page Z10 
> Earlier this fall, volunteers for the once-staid American Diabetes Association delivered a
> bombshell to the homes of 5 million Americans, some of whom have lost kidneys or legs or
> eyesight to diabetes. It compared the $1.5 billion the government shells out for research on
> AIDS yearly to the $316 million spent to cure diabetes--and noted that diabetes kills three
> times more people.
> "Why does the government spend $7 trying to cure AIDS and breast cancer for every $1 it spends
> on diabetes?" the purple-and-white card shouts in stark black letters. "Because they Act Up and
> people with diabetes are silent."
> It's the charitable equivalent of going negative, and while the language is unusually blunt,
> the message is hardly unique to diabetes. Americans with prostate cancer, muscular dystrophy,
> Parkinson's disease and dozens of others diseases believe that they have been cheated at the
> government's research checkout counter. They are no longer willing to wait for redress. They
> think millions of patients suffering from old-fashioned killer diseases have been shortchanged
> in comparison to the hot causes of the '90s, AIDS and breast cancer. 
> The National Institutes of Health (NIH), the government's health research arm, will spend $15
> billion this year on research to prevent and cure disease. This is the equivalent of the gross
> domestic product of Nicaragua, Rwanda and Sierra Leone combined, about $60 for every man, woman
> and child in the United States. But the allocation of this potentially life-saving research is
> increasingly under attack as consumers suffering from a vast array of diseases organize to
> battle for funds.
> John McBride of Lake Hiawatha, N.J., is the national sales administrator for the Pomerantz
> Staffing Group, a temporary agency and human relations firm, but his energies are increasingly
> focused on gaining more money for diabetes research. "It is my daughter's life that depends on
> this," he said, "her quality of life and her life itself."
> McBride's 4-year-old daughter was diagnosed last January with juvenile diabetes. Every day she
> must have her finger pricked four times to test her blood sugar. And every day she gets at
> least two insulin shots. 
> "Sometimes she screams and cries," McBride said. "She hates it, but the worst is when she begs
> me, 'Daddy, please take it away.' " 
> Research funds are allocated, he added, "on who is screaming the loudest.  There doesn't seem
> to be any kind of standard, no basic criteria, no attention to the number of cases, number of
> deaths, the costs to the economy."
> His evidence of injustice is this: Heart disease got only a third as much NIH research money as
> cancer in 1996, despite killing 200,000 more people.  Four times more money has been spent on
> breast cancer as on prostate cancer, which is almost as common. Diabetes advocates tote up
> federal research funding at $19.75 per patient, compared with $2,001.33 for every individual
> with AIDS. Muscular dystrophy, which slowly kills children as they approach their twenties,
> gets $14 million, while cystic fibrosis, another fatal disease affecting equally young victims,
> gets $70 million. 
> Officially, the financing decisions are made by Congress, which sets the appropriations levels
> for NIH's 21 institutes. But within that framework, decisions to award specific grants for
> particular diseases have been made by NIH officials after thousands of applications have been
> ranked in a peer review process.
> More and more Americans are suffering from diseases that no longer kill outright, but cripple
> and enfeeble inexorably over decades. A growing number of people with these chronic diseases
> are turning to lobbying as their only hope for a cure.
> No longer are patients content with decorous campaigns for research funding. They point to the
> success of AIDS advocates in winning a total of $7.7 billion in funding for research,
> treatment, housing and other support this year, and credit it to sheer aggressiveness. They
> draw the conclusion that only no-holds-barred government advocacy works. Some see this strategy
> as a coping mechanism as well as a personal crusade: It is a way of seizing power over
> something that is otherwise beyond the patient's control.
> Stewart Perry of Lexington, Ky., doesn't hold any scientific degrees or cut any swath out at
> the National Institutes of Health in Bethesda. "I'm just a poor old guy with diabetes in the
> insurance business," he said.
> "But I will not apologize for being a zealot for diabetes research. I have seen in my own
> family the pain and suffering caused by this disease," he said.
> Perry's father has it. His uncle has it. His grandfather has it. His great-grandmother had it.
> "I am bound and determined," Perry said, "to find a cure before my son has an opportunity to be
> diagnosed." His son is 13.
> Making Up Lost Ground
> The efforts of the diabetes advocates underscore the complex issues in the competition for
> federal research dollars.
> On the surface, the process seems straightforward. Congress provides annual budgets for NIH's
> 21 separate institutes, from the National Cancer Institute to the National Institute for Dental
> Research. But some patients see a vast inequity in the disbursements.
> "For years, we believed that a rising tide lifts all boats," said Michael Mawby, vice president
> of the American Diabetes Association, who discovered that his cause was getting less money in
> 1997, after inflation, than 10 years earlier. "But diabetes was grounded."
> In a relentless push during the past two years, diabetes advocates have worked to make up lost
> time in Congress, going over the heads of the NIH scientists and challenging House
> Appropriations Subcommittee Chairman John Porter (R-Ill.) to funnel more money to diabetes.
> "I was once walking along at the peak of my career and I thought I was invincible," said
> Stephen H. Smith, a state lobbyist in Columbia, S.C. Then, in 1989, he was diagnosed with
> diabetes and had to go on insulin, which caused him to lose his pilot's license. 
> "This ain't fair," he said, and after a successful crusade to regain his rights as a
> recreational pilot, he moved deeper into advocacy for federal diabetes research funding.
> "We have to do it," he said. "If we don't, we are going to fall further and further behind. If
> we continue to rely on NIH, diabetes will never be funded the way it should be."
> Chris Arrington, regional manager for a medical firm in Irving, Tex., is fighting for a cure so
> that his two children, Will and Haley, 7 and 8, won't have to take care of him or go through
> the same ordeal as he has for the past 12 years with insulin.
> "I am only 36 now," he said. "Complications are almost inevitable. Something will fail: a
> kidney, I'll become impotent, become blind, have a stroke, or another concern I have is that I
> have passed it on to my children.
> "By beating my chest out there, being the squeaky wheel, I am taking action, I am not just
> sitting back and letting the disease control me. I have a chance to make a positive
> contribution to a cure."
> At a time of generally increased funding for the National Institutes of Health, the American
> Diabetes Association has pressed for catch-up appropriations to make up for lost time, but so
> far its campaign has failed to get the results supporters had hoped for. 
> Just as the disease groups are stepping up their lobbying efforts, strong leaders in Congress
> and in the scientific community are exerting a countervailing force on the process. These
> officials are speaking out against what some derisively call "body count budgeting" that pours
> money into diseases based on possibly exaggerated and certainly inexact estimates of the
> numbers of individuals afflicted and the cost to society of their illnesses--regardless of the
> likelihood of scientific advances.
> No American is more influential in this arena than Porter, who has flatly refused to respond to
> the pleas of disease-specific organizations that money be earmarked for their cause in the
> annual NIH budget. 
> The American Diabetes Association fought hard to steer a giant increase toward NIH's diabetes
> institute, but failed. This year it got the same relatively generous increase as every other
> institute. Prostate cancer activists won a $175 million earmark for their cause in the Senate
> version of the appropriations bill, but that provision was deleted at the 11th hour in favor of
> language "strongly urging" NIH to spend more on the cause.
> Porter said that his refusal to earmark has nothing to do with diabetes or his view on any
> specific disease, but rather with who is best equipped to judge where the government's money
> can be best used.
> "If these groups ever succeed," said Porter, "they will rue the day. The last thing they want
> to happen is to have scientific opportunity determined by the relative power of diseases on the
> House floor."
> Not Enough Funds to Go Around
> Officially, no disease group seeks less funding for its competitors. But the pot is simply not
> big enough to satisfy everybody. Even though an organization called Research America is
> campaigning to double the NIH budget in five years, the entire increase could easily be
> swallowed up meeting the demands of just a few diseases. Cancer alone is campaigning
> for $5 billion. 
> Former Florida representative Paul Rogers heads the Research America effort, which succeeded
> this year in winning the first installment on its five-year plan. Rogers says his group hopes
> to deal with the infighting and competition among diseases by making enough money available so
> that research on all could grow. NIH currently fails to fund about two in three research
> applications that pass peer review muster, according to Rogers. 
> Generally speaking, the disease groups are careful not to say any disease gets too much money,
> only that theirs should get more. But some are increasingly fighting among themselves. For
> example, the Parent Project for Muscular Dystrophy recently attacked spending for drug abuse
> and alcoholism: "It is shocking that over $754 million is devoted to address the health
> problems of people whose irresponsible behavior causes those problems, while less than 1
> percent of that sum helps children dying of Duchenne muscular dystrophy," the group wrote to
> Porter a few weeks ago. 
> Many charitable groups have almost given up on influencing NIH directly, focusing their
> attention instead on politicians. They hound members of Congress, even the president, to
> earmark money as the only way to ensure that their cause gets its due.
> Congress held firm--this year. In an omnibus government spending bill filled with pork--from
> the Justice Department's mandatory $40 million payment to the Boys and Girls Clubs to the
> $750,000 set-aside for the University of Idaho Digital Geospatial and Numerical Data
> Library--the NIH appropriation is one of the few sections without specifically named
> beneficiaries. 
> Harold Varmus, director of NIH, says the institutes use five principal criteria in making
> funding decisions: public health needs, scientific quality of the research, potential for
> scientific progress, portfolio diversification and adequate support of infrastructure--such as
> training, equipment and facilities. More than half of NIH's research money is consumed by
> "basic research" projects that cannot be attributed to any specific disease, but may help
> potentially all of them. 
> Once the money is dispatched to an institute, about 10 percent is used by staff scientists, but
> most is awarded to researchers across the country by a complex system of peer review.
> Applications are ranked according to scientific merit and priority, and those with the best
> rankings are funded, depending upon how much money is available. 
> In fighting for funds, disease charities plead for more emphasis on the first criterion: the
> burden of a disease, its cost to society in lost productive years, in Medicaid and Medicare
> costs, in disability and early death.
> "Obviously, we are sensitive to the burden of disease, but there is no simple equation to
> decide how much money is spent in relationship to a disease," Varmus said in an interview. "We
> start with a lot of sympathy for people with these diseases and would like to improve
> prevention and treatment. But getting there is not as simple as sliding some money across the
> table and seeing a cure emerge." 
> "What complicates this issue," he said, "is that a lot of what we do that winds up being the
> most important is unplanned. Advances are hard at point-of-discovery to assign to particular
> disease . . . spending on one disease may well benefit other disorders."
> Varmus said that NIH spends a "substantial" amount on diabetes research, but he added, "Nothing
> is ever enough." 
> He calls for "another kind of advocacy." He'd like to see disease advocates work with NIH to
> help drum up enthusiasm among researchers for work in specific underserved areas. 
> Fighting for earmarks, he said, "is not very effective."
> Not so, say the advocates. "If I and others don't send the message" that diabetes has got to
> have more dedicated funds, "things will stay like they are at NIH," said Smith, the South
> Carolina lobbyist. "We will have the disease of the year. Whoever is going to scream loudest
> and squeak the most is going to rule. Look at the success of AIDS. Obviously that is the way it
> worked. They squeaked, and they got the money."
> Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania Health
> System, said Smith and advocates like him are right. "If they don't get in there and elbow and
> shove and push like a hockey player looking for the puck," he said, they will get left out.
> "The problem," Caplan said, "is inequity. There are some [disease] groups that are simply not
> organized enough, not strong enough, not focused enough, not prevalent enough to compete: like
> children, like people with embarrassing conditions like urinary incontinence. 
> "Urinary incontinence is a big problem," he said, "but you don't see anybody lobbying for more
> funds for that." 
> But Caplan is not optimistic that the priority-setting system will soon be changed. With more
> money available every year, the stakes are higher, the rewards are greater and the competition
> is more intense.
> Mawby, the lobbyist for the American Diabetes Association, fought doggedly this year to direct
> an additional $200 million to diabetes research.
> At Diabetes Association headquarters in Alexandria, he has a round table full of charts
> tracking disease research spending, lists of members of Congress and an undelivered plaque
> addressed to House Speaker Newt Gingrich.
> Gingrich won the plaque for getting diabetes an extra $300 million in 1998 in last-minute
> budget negotiations with Office of Management and Budget Director Franklin Raines and White
> House Chief of Staff Erskine Bowles, who has a child with diabetes. Gingrich's mother-in-law
> has diabetes. The plaque is leaning against the wall waiting for Gingrich to pick up.
> The victory for diabetes was as rare as it was short-lived, in Mawby's view. The money simply
> was used by NIH to replace funds diabetes would have received anyway, he said, although NIH
> officials heatedly dispute his contention, saying that the funds will be spread over five years
> to study important issues in the field that would otherwise not been funded.
> When Porter balked at the American Diabetes Association's demands this year, the association
> ran a full page ad in the Chicago Tribune, the leading newspaper in his congressional district.
> "Congressman John Porter, over 1,800 of your constituents urge you to make finding a cure for
> diabetes a national priority," the ad read.
> Porter, so entrenched in his North Shore Chicago district that he didn't even have an opponent,
> was not pleased.
> "I consider myself a strong supporter of finding the cause and cure for diabetes," Porter said.
> "Indicating the opposite is not effective; it is counterproductive.
> "My wife has diabetes," he added. "Do I care about diabetes? Yes. Do I want me determining
> whether it ought to be getting more funding at the expense of much more promising areas of
> research? No."
> Sidebar: Diabetes Groups Have Two Distinct Lobbying Styles
> As is true with many diseases, there is more than one group of advocates for diabetes awareness
> and research. The Juvenile Diabetes Foundation is devoted primarily to increasing funding for
> research for Type 1 diabetes, which occurs in childhood and requires patients to take insulin
> throughout their lifetime. The American Diabetes Association lobbies for both juvenile and
> adult-onset diabetes. 
> The two organizations have followed different paths: the American Diabetes Association uses
> aggressive lobbying and confrontation; the Juvenile Diabetes Foundation tries strong advocacy
> and collaboration.
> Juvenile diabetes has used the prestige of its international chairman, Mary Tyler Moore, to
> open doors on Capitol Hill. It has avoided personal criticism, political attacks and
> in-your-face tactics of any kind. 
> Daniel S. Greenberg, a visiting scholar in the history of science, medicine and technology at
> Johns Hopkins University and editor-at-large of the Science & Government Report newsletter,
> said the combination has been remarkably successful. "In general, he said, each [disease] takes
> a turn at being prominent on the Hill. Last year it was Parkinson's disease; this year it is
> juvenile diabetes."
> So while the American Diabetes Association is taking on Congress and the National Institutes of
> Health, the Juvenile Diabetes Foundation is operating in the favored zone of a "hot disease,"
> popular with both Congress and the American people. 
> S. Robert Levine, the husband of actress Moore, who has juvenile diabetes, is the chairman of
> the Juvenile Diabetes Foundation communications committee. Levine deplores the hardball tactics
> adopted by the American Diabetes Association. He believes in working within the system. 
> The confrontational approach "alienates people we need to be our collaborators in a quest to
> find a cure. We can't paint Dr. [Harold] Varmus  [director of NIH] as our enemy. He is not. He
> has great authority among scientists, a bully pulpit. He can be our greatest asset. He can
> rally the scientific community to our cause."
> Levine said he is pained that confrontational tactics may threaten relationships that are
> "desperately necessary" to find a cure for diabetes. "At the end of the day we cannot cure
> diabetes without sustained success over a long period." 
> In the 1999 budget, the institute that funds most diabetes research got an increase of 14
> percent--just slightly below average. The appropriations bill did not earmark any money for
> diabetes, but it did the next best thing. A special paragraph in the accompaning report
> mentioned diabetes specifically. 
> "The conference agreement concurs with Senate report language regarding the need for expanded
> research into Type I or juvenile diabetes," the document said. The institutes "are encouraged
> to focus additional resources in this critically important area."

Insulin-Pumpers website http://www.insulin-pumpers.org/