Beyond The Coat

When you give at charitable contribution to an institution or an organization to “fund cancer research” what does that really mean?

First, let’s talk about what types research can be done.

1. Basic research
   • In 1945 when the  National Science Foundation was formed, a formal distinction and definition of basic research was made:
   • Basic research is performed without thought of practical ends. It results in general knowledge and an understanding of nature and its laws. This general knowledge provides the means of answering a large number of important practical problems, though it may not give a complete specific answer to any one of them. The function of applied research is to provide such complete answers.
2. Translational research
   • This is a new-ish term that started emerging in the 1990s.
   • Translational research includes two areas of translation.
   • One is the process of applying discoveries generated during research in the laboratory, and in preclinical studies, to the development of trials and studies in humans.
   • The second area of translation concerns research aimed at enhancing the adoption of best practices in the community. Cost-effectiveness of prevention and treatment strategies is also an important part of translational science.
3. Clinical research
   • Patient-oriented research. Research conducted with human subjects (or on material of human origin such as tissues, specimens and cognitive phenomena) for which an investigator (or colleague) directly interacts with human subjects.
     • Patient-oriented research includes: (a) mechanisms of human disease, (b) therapeutic interventions, (c) clinical trials, or (d) development of new technologies.
     • Excluded from this definition are in vitro studies that utilize human tissues that cannot be linked to a living individual.
   • Epidemiologic and behavioral studies.
   • Outcomes research and health services research.

Next you have to consider where the research is being done and by who. 

1. Private companies
   • Many private companies, including pharmaceuticals, conduct a lot of research.  This research is often very specific (i.e. focused on a drug or device they are developing) and can be basic, translational, or clinical.
   • Historically, the majority of the clinical research done by the private sector had an academic partner because they didn’t have the expertise to design the trials themselves, they needed patients to be used for subjects for the trials, and they needed the prestige of academic publications to market their products.   Now private industry employs their own people (good, smart people that often start in academics), community physicians have become a reliable source of patients, and marketing…well hello internet.
   • It is estimated (from several years ago) that over 70% of clinical trials are now run by the private sector.
2. Government
   • The National Institutes of Health is the largest biomedical research agency in the world.  It is part of the Department of Health and Human Services.    For cancer research, all cancer related research falls under  National Cancer Institute (NCI) and includes basic, translational, and clilnical research.
   • The NIH/NCI employs a myriad of people to do this research and are employees of the federal government.
3. Academic Institutions
   • Non-profit academic institutions include colleges and universities that teach and train students and research is done by faculty.

It is not uncommon for projects to have collaboration between two or three of these entities.  For example, some basic studies of a a new Drug X, from company X, may be tested by University Y in a new model system they have available at University Y.

Now, let’s think about why some researchers need money and where it comes from.

1. Private companies generally don’t need an external revenue stream to fund their research.  They are for profit and they take their profit and roll it back into research.  Their money is internal. 
2.   At the NCI there is a small pediatric oncology branch.
3. The NCI receives money directly from the NCI budget as internal or intramural funding. Many of these researchers will also receive outside funding from private grants.
4. Academics – this is where I fall into the schema.  Our system is complicated.  I see patients 20% of the time and that portion of my time and salary is paid for by the revenue generated by billing third party payors (insurance companies).  The other 80% of my time is research and it generates 0 dollars of revenue and also has many expenses.  When I get money from sources, here are some examples of how the money gets spent:
   1. I pay the other 80% of my salary (don’t worry, pediatric oncologists make way less than you imagine, we are in the bottom 3-5 of all physician salaries).
   2. I pay the salaries of the people who work for me (research technicians, post-doctoral associates etc.)
   3. I buy lab supplies (chemicals, plastic ware, equipment etc.)
   4. I pay specialized people to help with parts of my experiments (fancy scanning electron microscopes, people to process tissue and make slides, statisticians to analyze big data sets, etc.)
   5. Part of some grants go to indirect expenses of the institution (this is how the institution pays the bills to keep the AC running, provide security etc).
   6. I pay to run clinical trials which is a myriad of charges including fees to get the regulatory paperwork done, use the investigational pharmacy, institutional review board fees, research nurses salary, data manager salary, research coordinator salary etc.

Here’s the important piece – Nearly ALL pediatric cancer research is done by investigators at the pediatric oncology branch of the NCI or at academic institutions across the United States.  Private companies very rarely do research or develop drugs for pediatric oncology because it is NOT PROFITABLE.   

Academic researchers can receive money from the following sources

• Internal funding from their institution – this is generally start up or “seed” funding for new investigators to get established and it is for a defined period of time (not ongoing like NCI intramural funding).
• Federal grants – this goes back to the NCI extramural funding that I talked about here.  The problem with this funding is that there isn’t a lot to go around and it’s spread across ALL types of pediatric cancer.   The latest reports for independent research grants (R01) is that you have to score in the top 10% to get a chance for funding. This doesn’t mean that the top 20 or even 30% of projects submitted are not good, solid projects by excellent researchers; this means that there is only enough federal money to fund the top 10%.    The pay line used to be around 25-30% before the budget cuts around 2003 that we haven’t recovered from yet (with no end in sight in my opinion).  This also means its hard, and a lot of really great researchers switch over to private industry where they get paid more and struggle less.   This includes talented pediatric researchers who may switch over to studying non pediatric topics.
• Private Grants – many non-profit organizations have picked up the funding gap for pediatric oncology and provide excellent sources of funding.  These grants are peer reviewed by other scientists for merit.  Some organizations are pediatric cancer focused (Alex’s Lemonade Stand or St. Baldricks Foundation) and others are focused on certain cancer types (Sarcoma Foundation of America).
• Philanthropic Donations – Individuals, corporations, organizations, or non-profit groups can choose to give their money to an institution or an individual researcher.

If you are moved to donate money to an institution, organization, or individual you should know where your money is going and how it is spent.  If you don’t, it’s time to ask them.  If they can’t tell you, it may be time to reconsider your donations.

#ChildhoodCancer365 #morethanfour

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