Recalcitrant Cancer Act

The words “cancer research” may evoke an image of white-coated scientists working diligently in their laboratories. But cancer research is also about money.

The National Cancer Institute (NCI) had a budget of $4.8 billion in 2013, which is lower than in many previous years. In the past 40 years, the NCI has spent $90 billion on research and treatment, according to Dr. Margeret Cuomo, author of A World Without Cancer. On top of that, there are approximately 260 nonprofit organizations dedicated to raising money for cancer research, and altogether their annual budgets top $2.2 billion.

Yes, that’s a lot of money. And there is increasing frustration with the results, or lack of them. Although there have been a few breakthroughs with some specific cancers, critics say there has been no progress in other cancers. The cancer death rate has fallen about 1 percent a year since 1990, which does suggest slow progress. But critics say that is a small return for the amount of money being spent.

There is also growing concern that the amount of money pouring into cancer research has made cancer research too political. For example, the NCI and the American Cancer Society are accused of spending too much money in grants to pharmaceutical companies that are doing little more than tweaking old drugs to make them marginally better. The agencies and the pharmaceutical companies dispute that claim.

This frustration with the slow progress of cancer treatments resulted in the Recalcitrant Cancer Research Act of 2012, which the President signed into law early last year. This Act directs the head of the NCI to steer attention and resources into research of recalcitrant cancers, defined in the bill as those with a five-year survival rate below 50 percent, and which have not seen substantial progress in the diagnosis or treatment.

Obviously, the intention is to push the NCI into giving more attention to cancers that have seen few improvements in treatment. The problem is, that’s a lot of them.

Lobbyists for pancreatic and lung cancer research pushed especially hard to get the “Recalcitrant Cancer” act passed, and recently the NCI released its recommended scientific protocols for continued pancreatic cancer research. Protocols for lung cancer research are expected soon. It’s not clear whether any other forms of cancer will benefit, however, even though many others fit the criteria.

For example, we don’t yet know if the “lung cancer” protocols will include protocols for mesothelioma, which has a 5 to 10 percent five-year survival rate and limited FDA-approved treatments.

Advocates for other kinds of cancer research view the Recalcitrant Cancer act warily. A man named Jonathan Agin, who lost a small daughter to a kind of brain cancer with no treatment at all, has been a vocal critic both of the Act and of the NCI. When he met with representatives of NCI to argue for more funding of children’s cancers, he was told that funding allocation does not matter, because discoveries in the lab often apply to many cancers.

Maybe so, but the Pancreatic Cancer Action Network still celebrated when the Recalcitrant Cancer Act passed. “It was the culmination of five years of effort by the Pancreatic Cancer Action Network’s passionate advocates and volunteers—who sent “76,000 emails, made 14,000 calls to Congress and participated in 1,500 meetings,” PCAN said. They must think the funding allocation matters.

It’s also the case that the head of the NCI, Dr. Harold Varmus, is unhappy with the law because he believes it ties the hands of scientists to determine how money is spent. But others are unhappy with NCI and think there should be less emphasis on the search for cures and more emphasis on prevention. NCI’s annual budget requests include billions for research and treatment, but usually less than $300,000 for prevention and control. It is argued we are likely to have better results putting money into preventing cancers to begin with rather than continuing to sink nearly all of our anti-cancer money into looking for cures.

But maybe both kinds of research are needed. Many years ago breast cancer was all but ignored by medical research in spite of its frequency. Then it became a cause, and today breast cancer is far and away the most well funded area of cancer research. Since 1975, the mortality rate from breast cancer has fallen from 31 deaths per 100,000 women to 23 deaths per 100,000 women. That means a lot of women have survived who would not have otherwise.

However the incidence rate has increased from 105 new cases per 100,000 women every year to 123 new cases. In 1999 a woman’s lifetime odds of getting breast cancer were one in nine, and now they are one in eight.

Why is this happening? There are many theories, but no one seems to know.

Part of the reason for the slow progress is that cancer actually is not one disease but more than 200 different diseases, each with different treatment requirements. And progress is being made, however slowly. However, clearly, there is more to be done.