Thursday, September 18, 2014

My wish list for the NIH

Over the past four decades I have seen a lot of really unhelpful research on breast cancer. And let’s face it, we really have not got very far. Recently, I have been asking why grant reviewers have not demanded more useful research, only to find that I am late to the party.

There was an interesting article at in which patients set the agenda for breast cancer research instead of the individual researcher with an idea. Yes.

Here is MY wish list for the battle. And it is a battle. However, when I die of this disease, please do not say that I lost my battle. Every time a woman or man dies of breast cancer, we all lose a battle. It is only my list but we are in this together and hiding behind pink ribbons does not stop the wives, mothers, sisters and daughters, husbands, fathers, brothers and sons from being mowed down.

1.       Funding. The NIH could open a fund for breast cancer research and everyone who wants to donate could donate directly. The NIH already hires staff to oversee grant funding so they will have no incentive to raise funds for the sole purpose of maintaining their organization. Let’s boycott pinkwash. They had a chance but used our money to tie pretty pink ribbons in the name of awareness while women and men died.

2.       Prevention. Prevention would be ideal. We know that longevity runs in families. What is it about some people that makes them less susceptible to cancer? What if we study the healthy to find out why their cells never turn cancerous? How can we use that information to prevent our errant cells from turning on us? In fact, many of us are our own labs. If breast cancer only develops in one breast, what caused the mutation in DNA in that breast and not the other?

3.       Treatment. Why is the current treatment not working very well? In fact, how well is it working? We have not made a lot of progress in terms of survival and it would be good to know why.

4.       Metastases. Why do some cancers progress and others don’t? Let’s eliminate talk of that five-year survival window. Many of us easily make it. It is meaningless and artificial. Let’s study every patient from diagnosis to death and record recurrence if and when it happens. Let’s examine what is working for long-term survivors so that every patient can be a long-term survivor.

5.       Correlations. A correlation is an association between two events such as eating red meat and breast cancer (unproven) and is reported using Relative Risk (RR). Correlation does not mean causation. Some studies showed an association, but when you combine all the data from all the studies, the effect often disappears. One of the most robust associations is between smoking and lung cancer. If you smoke, you are more likely to get lung cancer than if you do not. However, not all who get lung cancer smoke and not all smokers get lung cancer. In fact, the lifetime chance of getting lung cancer if you smoke is only between 15 and 25% (depends on your source) of all smokers. Correlation has a number of flaws so let’s see no more correlations. It is especially important to disregard correlations that are drawn from a patient’s memory. A study from 1993 described how patients’ memories of what they ate was altered after the diagnosis of breast cancer. In an earlier survey they had described their diets. After the breast cancer diagnosis, their memory of what they had eaten included more fat than the original survey. In other words, the diagnosis changed their memories. There is a good explanation by Charles Wheelan at If you are still not convinced that correlations are not helpful, you can find some really funny ones at

6.       Central database. The power of 21st Century computing is not being exploited. The entire genome (all the genes of a cell) of all breast cancer patients, their diet and exercise habits as well as their treatment, side effects and recurrence could be kept in a central store and computers can sift out the common elements. I am now in a clinical trial and the trial sponsors  demand a lot of my blood. The results are for their clinical trial alone. Now, imagine if that amount of data could be pooled for every patient.  Data could be input by health care workers and patients. We could sort out common side effects that some doctors refuse to acknowledge even exist.

7.       Grants would be prioritized so that applied research now gets top priority. Basic research has led the field and has resulted in a theoretical understanding of breast cancer, but now we have reached a point where the research must be applied to saving lives. We cannot afford to keep waiting for the theory to lead to changes in far future treatments. We need treatments now, and we need it from researchers as well as biotech companies.

8.       Stop funding unhelpful research. If the research does not save lives, or it requires leaps in logic, or is so theoretical that it cannot be implemented, it is not helpful. Every study needs to answer the question: Why is this important? Let’s move on from the research flavor of the month.

9.       Every research trial could be registered with the NIH before it even starts, and not only the ones funded by the NIH. That way, if there are a thousand studies on say, the use of soy, but only five showed significant effects then we can examine the effects of random chance.   According to Charles Wheelen, some journals already require this.

10.   One more selfish thing. The clinical trial that I am on has a side effect of diarrhea. Chemo left me unable to tolerate anti-cholinergics. All that is left for me is the absurdly disgusting tincture of opium. Why am I controlling side effects with a drug that is thousands of years old? I’m not much of a whiner. I get up in the morning, run, do chores, be a wife and mother and go to work no matter how sick I feel, but tincture of opium brings out the 2-year-old in me.

·         2-year-old me: I don’t want to take it. It tastes terrible.

·         Logical me: You have to take it to stop the diarrhea.

·         2-year-old me: But the taste does not go away for a long time.

·         Logical me: But the diarrhea will not stop if you don’t take it.

·         2-year-old me: What’s the point? I’ll just have to take it again in 4 hours

·         Logical me: Your diarrhea will be more-or-less controlled for 4 hours

·         2-year-old me: But it won’t go away

·         Logical me: It will get worse if you don’t take the drug

·         2-year-old me: No, maybe it will stop now

·         Logical me: You know it won’t.

And you won’t believe how long this can go on.







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