The Cure

I received an email earlier this week asking what the Colon Cancer Alliance is doing in the area of research.  I can’t quite get that question out of my mind.

The actual answer is not tough, of course.  The fact is that we have not done a great deal in this area.  We provide information about clinical trials.  We keep close contact with companies who have products on the market.  We track companies who are working on new approaches.  (In fact, next week I am visiting two such companies to learn more about their work.)  We let patients know about surveys and data collection.  And we have signed on, along with a bunch of other people, to documents calling for more funding to the NIH.

A part of me wants to do more.  I spent eight years (a long, long time ago) as a lab tech in medical research laboratories.  I remember seeing for the first time a machine that could analyze tens of thousands of bits of DNA at the same time, and still get a kick out of looking at gels and scans and data plots.  I also am old enough to remember the initial calls to find a cure for cancer.  The idea was that if we threw enough money at the problem we could find the magic elixir that would slay this beast in all its different forms.

So why isn’t CCA doing more in this area?  The easy answer is this—it is not a good use of our limited resources.  Research is expensive.  The programs that led to current treatments for colorectal cancer cost hundreds of millions of dollars.  Despite the cost, a lot of companies are doing new work in this area.  Earlier this year I attended a meeting at which small biotech companies showcased the products they are developing.  At least a dozen of these companies are working in colorectal cancer.  Each company is spending millions on this development.  In the face of this kind of investment, our efforts would have little or no impact.

Still, we could do more.  We could raise funds for start-up research grants.  In the academic world, young investigators often have a new idea they want to test.  They can’t get funds from the NIH until they have data.  They can’t get data without funds.  At this juncture an investment of $50,000 can be the difference between an amazing new approach being developed and this idea being relegated to a rusty cabinet in a musty closet. 

I keep coming back to screening, though.  In the days of my youth we dreamed of a cure for cancer.  With colorectal cancer, though, we have a better solution—we can prevent over 80% of the cases simply through screening.  In contrast, researchers feel they have made a major breakthrough if they find a new therapy that improves life expectancy by 3%.  So, should we spend our limited resources on getting people screened or should those funds become a drop in the bucket required to get a 3% improvement in outcomes?  The numbers demonstrate clearly where we should invest—in screening. 

I have to say, though, that this leaves me dissatisfied. What about the people who fall outside the screening guidelines?  Do we just abandon them?  What about the people who are already diagnosed?  Do we just say, “Well, why didn’t you get screened?” 

Here is my hope.  I hope that the efforts we are launching will have a major impact on screening rates across the country.  I hope that this changes the way we talk about and think about this disease, and that everyone (including primary care physicians who advise 25 year-old patients with persistent abdominal pain and rectal bleeding to eat more vegetables!) will be better sensitized to colorectal cancer.  I hope every patient will seek out and find a network of support and information that will enable them to take control of their treatment and insist on the latest and best care. 

And while I wish desperately that CCA could be the source of funding for some new approach that will result in the “magic bullet” for this cancer, we simply can’t focus on that right now.  I doubt the magic bullet exists.  I think that if it does exist it will be expensive to find and market.  So we will work on supporting patients, and on pushing screening.  And we will watch some percentage of people grow sicker as they wait desperately for “the cure”, knowing that too many of them won’t make it….

I hate this disease.

Comments

[Rotorhead]

Rogarding your services and clinical trials: This is one of the areas where my doctor was least prepared to inform me. "There's a trial for a drug called avastin" he said. Great, what's involved? He handed me the consent form then did a google search. That's it. My later questions regarding side effects and mitigating factors (age, sex, health, etc) were not answered to my satisfaction, and I couldn't find much info on my own. I didn't go so far as getting proper copies of published reports in medical journals - my fault there; but I did feel left out by my doctor. CCA links and FAQs on you clinical trials page are very good - but I'd like to see more summaries/overviews of current trials, maybe even points of contact for clinics that have patients undergoing them. I know if I could have talked to some folks going through avastin treatment it would have went a long way in helping me make a decision. As it was, not enough info meant no participation for me. Aloha, RH

[Tim]

I think your experience is common--many doctors know little about trials unless they are involved in the trial. Even then, they mostly have information on the trial in which they are involved.

CCA plans to create a more robust section around this. We are currently waiting on news of a grant that would allow us to hire a part-time medical editor specifically for this purpose.