The Impact of Advocacy

This blog is a little different from my usual subject matters.  Instead of reporting on the status of various clinical trials, I'm going to discuss a paper by Rachel Kahn Best entitled Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy.   This paper is about how the US government funds research into diseases.

Here is the paper: http://asr.sagepub.com/content/77/5/780.full.pdf+html
but it might require payment to see by the time I post this blog entry.  Here is some coverage of the paper:
http://scienceblog.com/56900/patient-led-advocacy-has-changed-how-us-government-funds-medical-research/#t3OR5WHhyOzpFFBc.99

My Summary of Best's Paper:

• Prior to 1980s funding of medical research:
• Was viewed as a benefit to the researchers being funded
• Was allocated based on perceived quality of the proposed research
• During the late 1970s to 1980s there were large social movements (largely focused on AIDS and breast cancer) which changed governmental thinking and policies
• Starting in the 1990s funding of medical research:
• Was viewed as a benefit to the people with the disease being researched
• Was allocated based on impact of the disease being researched
• Advocacy organizations can have a large impact in government funding of medical research. There is a strong link between advocacy and funding.

Some Details

Here is a key quote on funding:

Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.

Underfunding of Diseases Common to Women and African-Americans

Most of the news coverage of this paper has focused on the "underfunding" of women's and African-Americans' diseases.  This paper discusses the idea that research into diseases of women and African-Americans are underfunded in comparison to diseases of men and whites, including possible reasons for this.  Based on the available data, the paper suggests that the difference is caused by a lack of advocacy organizations.  That funding is based on advocacy organizations, and there are fewer advocacy organization for diseases of women and African-Americans as compared to men and whites.  (Put bluntly: the difference is more directly caused by economic discrimination rather than sexism or racism.)

However, rather than discuss this conclusion, I think it is more important to discuss the weaknesses of the basic idea that diseases of women and African-Americans are underfunded.  The paper lists these weaknesses very clearly:

First, women's diseases are NOT underfunded with respect to men's diseases.    A more accurate statement is that, for women's diseases, breast cancer is funded at a much higher level than men's diseases, and all other women's diseases are funded at a lower level, and everything averages out.  A serious argument can be made that funding should be allocated more evenly among women's diseases, but not that women's diseases as a whole are underfunded.  (Remember that breast cancer has several very strong advocacy organizations, which likely leads to it's "overfunding".)

Second, when the study talked about African-American's diseases being underfunded compared to others, it is very important to remember that only one disease uniquely common to African-Americans was included in the analysis: sickle cell anemia.  So when the study said African-Americans' diseases were underfunded, what it really meant was that sickle cell anemia was underfunded.  (That does sound racist, but it's a single data point, so I'm nervous about reading too much into it.)

Questions for you to Consider

You will notice I'm making no attempt to answer any of the questions below.  Each one of them is a separate "can of worms": worthy of an all night "bull session" in a college dorm room, with some good friends, over some beers.  They are the kind of questions where the discussion is more important than the answer (especially since most of them have no absolute answer).

1. Which model do you think should be the foundation of research funding?  Should research be funded as a benefit to the researchers or to the patients?

2. If you are a proponent of funding based on patient impact, then how do you deal with the problem of diseases which target people who are already discriminated against, being underfunded specifically due to that discrimination?   Early on many believed that AIDS was underfunded specifically because the administration (at the time) didn't care about gays.

3.  If you accept that medical research should be funded based on impact to patients, then how do you measure that impact?

• Do you measure in terms of number of deaths?  If so, type-1 diabetes will have a relatively lower priority, since it is a less common direct cause of death.
• Do you measure in terms of number of people with the disease?  If so, minor but common diseases (like the common cold) might get prioritized higher than major (but rare) killers like bone cancer. 
• What impact should age have?  If two diseases kill the same number of people, but one kills 20 year olds, while the other kills 80 year olds, should they get equal funding?  (This is a classic AIDS vs. cancer argument.)
• Although mortality and prevalence are common ways to measure impact, from society's point of view, lost productivity might be a better measure.  It does serve to merge depth and breadth of impact into one number.  But then are we going to fund "diseases of the rich" over "diseases of the poor"?  Because when we start measuring economic impact, that's often what it boils down to.

4.  If you accept that medical research should be funded based on impact to patients, then do you take into account other facts about your patients?

• What impact should preventability have?  Consider three diseases: liver disease, syphilis, and type-1 diabetes:  Liver disease is often (but not always!) caused by alcoholism or drug addiction. Syphilis can be prevented via safe sex.  Type-1 diabetes can not be avoided in any way.  Should these facts impact the funding level for research into these diseases?
• Many people are willing to underfund research into "diseases" like alcoholism and drug abuse (?are those diseases, or just bad habits?)  But what about lung cancer?  Are you going to fund research into curing the type that smokers get, or just the type that non-smokers get?  What about types that are more common in smokers but occasionally pop up in non-smokers?

Why did I write this blog?
Although we often don't think about it, the federal government is a huge funder of research aimed at curing type-1 diabetes (maybe the largest).  Even research they did not fund directly is often done by programs or sites they did fund.  Therefore, understanding what motivates federal spending is important to understanding research aimed at curing type-1 diabetes.  Even though this is not directly about a clinical trial, I still thought it was interesting and important to blog on.

Joshua Levy
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My blog contains a more complete non-conflict of interest statement.
Clinical Trials Blog: http://cureresearch4type1diabetes.blogspot.com