White House Chronicle

News Analysis With a Sense of Humor

Cancer ‘Moonshot’ Has Paltry Dollars, Losers

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By Llewellyn King

Whenever the government wants to be seen to be doing something huge, it invokes the Manhattan Project or the moon landing. So the new cancer initiative of the Obama administration is called the “moonshot.”

But it’s neither the equivalent of the Manhattan Project, which developed the atomic bomb during World War II, nor President Kennedy’s ambitious program to land a man on the moon, after the Russians appeared to have stolen a march with the launch of Sputnik, the first satellite in space.

Those programs succeeded because they were tremendous national commitments without regard to funding. The $1 billion in proposed funding for the “moonshot” cancer initiative is somewhere between modest and paltry. In the world of biomedical research, $1 billion simply doesn’t buy much.

The pharmaceutical industry estimates that it costs well over $1 billion to bring just one new drug to market. Cancer needs many drugs.

The lead agency in this new iteration of the war on cancer, declared in 1971, is the National Institutes of Health. It has an annual budget of $32 billion on which there are demands from many deserving fields of biomedical research besides cancer.

President Obama has asked Vice President Biden to lead the cancer moonshot effort. I’ve been with the vice president when he has talked about his commitment to the cause of cancer research and the death of his son, Beau, from brain cancer. His sincerity and his commitment to cancer research is palpable, but he won’t have the dollars to get the job done.

The biggest contribution to the research for a cancer cure may be the stimulation the moonshot will give to extant cancer efforts, but it’s not without a downside.

Many other diseases fear they may be undercut by the cancer initiative. In the world of biomedical research, there is finite funding and talent — and a new initiative tends to draw the best research minds. The top magnets for good biomedical researchers these days are cancer and AIDS, and many other deserving diseases lose out. Biomedical research requires stability, so that decades of a scientist’s life can be devoted to a single line of endeavor.

I follow one of the more obscure diseases, one that that has been pitiably starved of public and private funds: Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. Compared to any other disease affecting a large number of people (1 million victims of ME/CFS in the United States, according to the Centers For Disease Control), it has been funded so little by the government as to amount willful neglect. It receives a miniscule $5 million a year in funding.

Last year, after public and media pressure that has been applied for years, NIH Director Francis Collins announced that things would be rectified. But he didn’t mention a dollar figure; not when he made the announcement in October and not to date. No moonshot here, not even a Fourth of July firework.

Yet the suffering of those with ME/CFS is truly awful. I’ve been in the sick rooms and interviewed the few doctors who specialize in the disease, and the situation is one of unabated misery. Those who are the most affected can’t tolerate light or sound, and must pass their days in the silent dark. For years, one poor young man has had to take refuge from the disease in a modified closet. Others suffer from a world in which they’re punished for doing everyday things: A dinner with friends can mean days in bed for recovery.

There seems to be no light at the end of the victim’s physical pain and mental fog, despite decades of pleading from advocates and caregivers that some serious research be funded by NIH.

While we’ve been the world’s powerhouse in research in all sciences, biomedical is now being starved of research dollars. Recently America’s most revered virus hunter, Dr. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, has had to resort to crowdfunding. He and his deputy, Dr. Mady Hornig, can be found on YouTube eating red-hot chili peppers in an attempt to raise money for their ME/CFS research.

Dollars in across-the-board biomedical research are falling when they should be rising. Recently, NIH’s budgets have been 25 percent smaller in constant dollars than they were in 2003.

Research pays. Most of it doesn’t yield dramatic stuff, like a moonshot, but rather solid, incremental gain. In science, incremental gain is the equivalent of compound interest. But it needs sustained funding. Not rhetoric. — For InsideSources


Buckets of Iced Water Are Fun, Not an Answer

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Two seemingly unrelated items of medical news: Ebola is devastating West Africa, and may spread around the world, and the entertaining ice bucket challenge has raised $115 million for ALS research.

The linkage is that both diseases have needed and still need medical research. So do hundreds of other diseases and conditions.
The truth is that the amount of money the United States spends on medical research is falling precipitously. It has been hit by budget worries in Congress, sequestration, and the decline in research funding by corporations.

Leo Chalupa, vice president for research at The George Washington University, said on “White House Chronicle” last weekend that the National Institutes of Health budget for research grants has decreased by 20 percent since 2004. He said that five out of six research applications are now rejected by the NIH, the principal conduit for federal funding of medical research.

The George Washington University is a member of the Science Coalition, a group of more than 60 of the nation's leading public and private research universities. Since its establishment in 1994, the coalition has advocated for sustained federal investment in basic scientific research as a means to stimulate the economy, spur innovation and drive America's global competitiveness.”

The late David Fishlock, science editor of the Financial Times, wrote and spoke elegantly about the problem democracies have in sustaining scientific funding; how they tend to be heavy on the gas, and then heavy on the brakes.

The government funds research through its own network of institutes and laboratories, and through grants to universities and corporations. When it comes to capturing the energy and flair of young researchers, the universities are vital.

Jennifer Reed, associate professor in the Department of Chemical and Biological Engineering at University of Wisconsin-Madison, said on “White House Chronicle” that universities contract with graduate students for five years, but the federal grants for research, when they get them, can be for less time. Reed said this is devastating to the research and the lives of the young researchers. Her funding comes from the Department of Energy and is aimed at using renewable materials to make alternatives to fossil-based plastics; also energy storage.

The problem is acute in medical research, most of which has its genesis in grants made by the NIH. Contrary to popular belief that medical funding is shouldered in the private sector, Chalupa said pharmaceutical companies often have narrow interests in particular drugs for particular conditions. “They have shareholders to answer to,” he said.

But it is not just funding that bedevils research, it is politics as well. Good projects are canceled and bad ones are incubated, depending on their appeal to particular constituencies. For example, fusion research has been lavished with money compared to other nuclear research needs, including the increased use of nuclear medicine to save lives and suffering.

Also the government funds research through many agencies, and this often reflects local or political pressure. Some researchers have found that they have to shop for funding, from NIH to the Pentagon to the National Science Foundation. Others have turned to crowd-funding, including the famed virus hunter Dr. W. Ian Lipkin, who directs the Center for Infection and Immunity at Columbia University's Mailman School of Public Health. Dr. Lipkin is now in high demand because of the Ebola crisis. But if there had been more work on viruses since the discovery of Ebola in 1976, there might now be a vaccine or other therapy to deal with the epidemic.

The United States is still the creative engine of the world. But without steady expenditure, it won't be firing on all cylinders. Chalupa and Reed warned China is increasing its funding for research rapidly, and is set to overtake the United States.

One (or more) patient launched the iced water caper that has been so successful out of frustration with the ALS research effort. It has been creative, but it will not keep the United States as the preeminent home of brave discoveries. Or to help the sick. — For the Hearst-New York Times Syndicate

Buckets of Iced Water Are Fun, Not an Answer

by Leave a Comment

Two seemingly unrelated items of medical news: Ebola is devastating West Africa, and may spread around the world, and the entertaining ice bucket challenge has raised $115 million for ALS research.

The linkage is that both diseases have needed and still need medical research. So do hundreds of other diseases and conditions.
The truth is that the amount of money the United States spends on medical research is falling precipitously. It has been hit by budget worries in Congress, sequestration, and the decline in research funding by corporations.

Leo Chalupa, vice president for research at The George Washington University, said on “White House Chronicle” last weekend that the National Institutes of Health budget for research grants has decreased by 20 percent since 2004. He said that five out of six research applications are now rejected by the NIH, the principal conduit for federal funding of medical research.

The George Washington University is a member of the Science Coalition, a group of more than 60 of the nation's leading public and private research universities. Since its establishment in 1994, the coalition has advocated for sustained federal investment in basic scientific research as a means to stimulate the economy, spur innovation and drive America's global competitiveness.”

The late David Fishlock, science editor of the Financial Times, wrote and spoke elegantly about the problem democracies have in sustaining scientific funding; how they tend to be heavy on the gas, and then heavy on the brakes.

The government funds research through its own network of institutes and laboratories, and through grants to universities and corporations. When it comes to capturing the energy and flair of young researchers, the universities are vital.

Jennifer Reed, associate professor in the Department of Chemical and Biological Engineering at University of Wisconsin-Madison, said on “White House Chronicle” that universities contract with graduate students for five years, but the federal grants for research, when they get them, can be for less time. Reed said this is devastating to the research and the lives of the young researchers. Her funding comes from the Department of Energy and is aimed at using renewable materials to make alternatives to fossil-based plastics; also energy storage.

The problem is acute in medical research, most of which has its genesis in grants made by the NIH. Contrary to popular belief that medical funding is shouldered in the private sector, Chalupa said pharmaceutical companies often have narrow interests in particular drugs for particular conditions. “They have shareholders to answer to,” he said.

But it is not just funding that bedevils research, it is politics as well. Good projects are canceled and bad ones are incubated, depending on their appeal to particular constituencies. For example, fusion research has been lavished with money compared to other nuclear research needs, including the increased use of nuclear medicine to save lives and suffering.

Also the government funds research through many agencies, and this often reflects local or political pressure. Some researchers have found that they have to shop for funding, from NIH to the Pentagon to the National Science Foundation. Others have turned to crowd-funding, including the famed virus hunter Dr. W. Ian Lipkin, who directs the Center for Infection and Immunity at Columbia University's Mailman School of Public Health. Dr. Lipkin is now in high demand because of the Ebola crisis. But if there had been more work on viruses since the discovery of Ebola in 1976, there might now be a vaccine or other therapy to deal with the epidemic.

The United States is still the creative engine of the world. But without steady expenditure, it won't be firing on all cylinders. Chalupa and Reed warned China is increasing its funding for research rapidly, and is set to overtake the United States.

One (or more) patient launched the iced water caper that has been so successful out of frustration with the ALS research effort. It has been creative, but it will not keep the United States as the preeminent home of brave discoveries. Or to help the sick. — For the Hearst-New York Times Syndicate

Florence Nightingale Still Comforting the Sick

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It is time to add May 12th to our list of dates worth commemorating — especially for 1 million in the United States who suffer from Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.

This year marks 192 years since Florence Nightingale’s birth in Florence, Italy to wealthy English parents. As a young woman, she felt herself called to take up nursing. Later, her heroic work caring for wounded British soldiers during dark nights of the Crimean War earned her worldwide fame as "The Lady of the Lamp.”

Nightingale is given credit for inventing secular and modern nursing because she recognized that troops were dying, not just from their untreated wounds, but also from malnutrition and dehydration.

She followed up her war work by writing a landmark text for nurses and founding a training school in London. Her natural talent for numbers helped her keep detailed data on patients, and she ultimately won extra renown as a statistician.

But from 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers here and abroad (17 million) commemorate her birthday as a kind of rallying point; their own lamp in the dark.

And the world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead,” she said.

Everything about CFS is controversial. It has been on the medical agenda since 1934, when there was an outbreak centered on a Los Angeles hospital. Currently 63 outbreaks have been documented, but still what is not known dwarfs what is known.

What is known is that it is a disease of the immune system, related to and in some cases overlapping fibromyalgia, a disease of the muscles. It also involves the neurologic and endocrine systems. The disease has broken out in startling clusters – locations in Nevada, Florida, New York and California among others just in the 1980s.

Its deadliness is slow and subtle. Studies suggest that it takes 20-25 years off the average sufferer’s life, but there are no dramatic sudden deaths or gory symptoms to attract attention.

Expert virologists such as Columbia University’s Dr. Ian Lipkin agree that the disease may yet turn out to be viral. But the once-exciting report from the Whittemore Peterson Institute in Reno, Nev., targeting the XMRV retrovirus had to be retracted for faulty science.

Doctors are slow to diagnose CFS because if that is not the area of their practice, there is no easy diagnosis.

At present there are no bodily fluid tests, no imaging, no temperature transients. Nothing. Just very sick people; very, very sick people. Immune system studies, spinal fluid aberrations, and other biomarkers show promise and may be used to identify the disease some day.

Probably 75 percent of CFS victims start with some flu-like disease. Maybe 4 percent of people who come down with mononucleosis will get CFS.

Most sufferers' lives are turned upside down. Their first collapse comes without warning, usually following exercise.

Although memory and verbal-skills loss are often part of CFS, most victims remember exactly the day and time they were stricken. Laura Hillenbrand, who incredibly has written two best sellers, cannot leave her home and could not attend her own wedding.

Deborah Waroff, a New York writer has had CFS for 23 years. In September 2003 and all through 2004, she could do little more than lie on the living room couch. Waroff struggled back to the point of functioning a few hours a day. But two back surgeries in 2010 left her immune system at a record low level, and brought on another long-term collapse. She is back to two or three-hour spells of activity, but not on two consecutive days. “I've lost half of my adult life,” she says.

These stories are multiplied a million times. Being a victim can include abandonment by families, spouses and lovers, friends and colleagues, workplaces and insurance companies.

Florence Nightingale shone a light of hope from her lamp in the ghastly Crimean hospital wards. CFS sufferers hope that the spirit of Nightingale will shine a loving light into the darkness of their disease — lost as they are in plain sight of the world around them. – For the Hearst-New York Times Syndicate