With no significant advances for people with diabetes on the horizon, many in the diabetes community wonder what the future holds. Will there ever be a cure? Is research moving in the right direction? Just what can people with diabetes expect in 1997?
Criticism surrounds the National Institutes of Health (NIH) because it has a $12.75 billion budget and lacks ready accountability. But leaders in the diabetes community and research advocates recognize the uncertainty of research as an investment-with limited guarantees of immediate return on investment-and are not quick to criticize the NIH for poor management of taxpayers’ dollars.
The answer to the question of what the future for people with diabetes holds, they stress, is dependent on the government’s commitment in terms of research dollars. At just 2.6 percent of the NIH budget and shrinking, diabetes research funding is clearly not indicating the commitment diabetes community leaders want.
Bill Schmidt, director of Government Relations for the Juvenile Diabetes Foundation (JDF), is concerned that diabetes has been eclipsed as a national concern by other competing research endeavors. That makes many feel that diabetes has been accepted the way it is-a life-threatening disease to be controlled rather than cured, he says.
“Something we’re hearing from our constituents is that nothing has changed for people with diabetes in the last 10 years,” says Schmidt. “There continues to be the perception that if people adequately manage diabetes, then there isn’t a problem.”
Mary Woolley, president of Research! America, a research advocacy and public relations firm that represents the interests of 350 science organization members, likens insulin-dependence for people with diabetes to the iron lung used to sustain polio victims of the past. “If we had decided that’s all we (were) going to do, we would have hospitals filled with people on iron lungs,” she says. “(Insulin is) a stop-gap measure, not the cure.”
The NIH’s 6.9 percent increase from $11.9 billion to $12.747 billion for 1997 was the only government increase for science in the 104th Congress, leading some to assess it as a small victory.
But diabetes-related research did not fare that well. NIH funding for diabetes in total, including diabetes-specific money for the National Institute of Diabetes and Digestive and Kidney Diseases, will increase only three percent from $309.4 million to about $320 million.
The trend is that research funding for diabetes has become a smaller slice of the NIH pie-shrinking 1.3 percent since 1987. The NIH spends four times as much on heart disease research, 14 times as much on cancer research, and 50 times as much on AIDS research, according to the American Diabetes Association (ADA).
Schmidt worries diabetes has taken a back seat to other, more vocal campaigns, such as the well-organized fights against breast cancer and AIDS. “Diabetes doesn’t have a good visual,” he says, referring to its lack of a charismatic spokesperson or a grassroots campaign as did AIDS research advocates who were “willing to be outrageous in their tactics.”
Diabetes: The Costliest Disease in America
What is visible-especially to congressional budget hawks-is diabetes’ cost. It is the most expensive disease in the United States, in human and dollar terms. It afflicts 16 million Americans and has direct costs between $90 billion and $100 billion, according to the ADA. The ADA also reports that Medicare spends $30 billion a year, one-quarter of its budget, on diabetes.
The cost of diabetes compared to the amount spent on research is even more grim. Just 25 cents were spent on research for every $100 in direct costs compared to $12 spent on research for every $100 in direct costs for AIDS in 1996.
“The central issue is that we believe the Congress should increase its spending on diabetes commensurate with its high cost,” says Philip E. Cryer, MD, president of the ADA.
Schmidt agrees, adding, “I think the name of the game is trying to educate the members of Congress and to convince people it’s an extremely costly disease. Hopefully that will cause research dollars to flow in that direction.”
Are You Willing to Pay for Diabetes Research?
Woolley says that educating policy makers is key, but adds that the American public already supports more research and is willing to pay for it, according to Research! America polls.
According to a May 1996 public opinion study done by the Charlton Research Company for Research! California, an affiliate of Research! America, 68 percent of Californians responded that the national commitment to medical research should be higher. Eighty-one percent agreed the federal government should support basic scientific research, even if it brings no immediate benefits. And 59 percent, according to a June 1995 study, would “definitely” or “probably” donate some of their federal tax refund for medical research.
“The general point is: I think people are hungry for research outcomes that are valuable for people on a daily basis,” says Schmidt.
Woolley says that diabetes registers with the American public because it is an “understandable disease.” Almost everyone in America identifies with it because so many people have family members who have been touched by its effects, she says.
The reason these people don’t speak out for more research to find a cure for diabetes, she says, is they don’t realize that more research is possible and is being held back by short-sighted thinking in Congress. “A lot of folks have been caught up in the rhetoric of cost cutting,” she says of the current Congress’ mood. “We don’t have to buy into that.”
A divisive September 1996 poll by Science-Watch Service, Inc., which surveyed 30 floor votes over the past two sessions, shows democrats appearing more pro-science than republicans. One hundred and thirty-two democrats scored over 70 percent in support of science and research funding, while 140 republicans scored below 39 percent.
The study, criticized by republican leaders for merely rewarding big spending, underscores researchers’ shift from plain old lobbying to public relations and polls to bring their issues directly to the American public.
Research: Government Waste or Wise Investment?
NIH funding, according to Woolley, represents only seven-tenths of one percent of the entire federal budget. As an investment, she says, that is too little. We spend twice as much on military intelligence alone. “The point is we also need research intelligence,” says Woolley. “Think of all the money we’d save if we found a cure.”
Schmidt says the JDF, despite the fact that it is very healthy financially this year with a record of $31 million raised in private funds, cannot ignore that the government’s commitment to finding a cure and bettering the lives of people with diabetes is paramount.
Diabetes leaders and research advocates, with public support and the weight of economic incentive, are not planning to sit still.
“We are going to lobby the Hill like we never have before,” says Keri Sperry, communications director of Research! America.
“(ADA lobbyists have) been up on the Hill asking for more money,” says Erin Bilbray, manager of Government Relations at the ADA. “Now, we’re going to show (Congress) how much this illness is costing the government.”
Changing the Image of Research
Most agree that putting the cost of diabetes first will help the cause. With competitive pressures, deregulation of the research industry and business’ loss of research write-off privileges, research has become a business. Decisions are made based on quarterly profit, and research expenditures have no guarantee of immediate return on investment, causing research funding to be criticized as government waste.
Woolley says Research! America works to change the image of researchers from extensions of big government to that of people who are “accountable, accessible, and proud of working in the public interest.”
Increased public relations efforts, along with stressing diabetes’ high cost, may be working. Although Congress’ current plan to cut the deficit includes a call for cutting science spending by a third over seven years, the 1996 budget did not suffer from big cuts.
And public opinion-being closely watched by a republican-held Congress that suffered in the polls after the shut-down of the federal government-suggests it may not suffer in 1997. But it is up to the diabetes community to keep diabetes on the minds of its elected representatives, says Schmidt.
“People want this to happen, and people are willing to pay for it,” says Woolley. “The future does look good.”