|
After actor Michael J. Fox announced publicly in 1998 that he has Parkinson’s disease, he began aggressively raising money to find a cure. He has testified before Congress twice, asking lawmakers to increase spending on Parkinson’s research to $1 billion by 2005, and he started the Michael J. Fox Foundation for Parkinson’s, which has funded more than $35 million in research since 2000.
While Fox’s efforts are admirable, his activism raises some uncomfortable questions about the role patient-advocates play in health policy and the distribution of research dollars, a topic explored by Rebecca Dresser, J.D., on March 9 during the Fordham University Center for Ethics Education Spring Lecture Series.
|
|
|
What if, asked Dresser, the attention Fox has drawn to Parkinson’s—or Christopher Reeve to spinal cord injuries—is siphoning research dollars away from sickle cell anemia or Krones or some other disease with no celebrity spokesperson or even an organized advocacy group? Well-funded groups, such as the Susan G. Komen Breast Cancer Foundation and the Elizabeth Glaser Pediatric AIDS Foundation, have tremendous political clout with the potential to influence federal funding decisions.
“Not all people are represented,” said Dresser, a Center for Ethics Education fellow and professor of law and ethics in medicine at Washington University School of Law. “When only those diseases with proactive advocates are considered in terms of public funding, others are left out. There need to be processes and procedures in place to achieve fairness.”
The landscape of patient advocacy changed dramatically with the spread of HIV/AIDS in the 1980s, said Dresser, who charts the rise of such groups in her book When Science Offers Salvation: Patient Advocacy and Research Ethics (Marquis Who’s Who, 2001). Powerful groups organized, educated themselves about the science of HIV and lobbied intensely for research dollars to find a speedy cure. Wanting immediate results is understandable, but scientific research is a lengthy process that may not produce concrete treatments or drugs for years, even decades.
“Advocates measure research in its ability to help patients now,” said Dresser. “They become so focused on immediate benefits that they can impede the basic science that can eventually result in clinical progress.”
There are many wonderful, dedicated patient-advocates who do amazing work representing their constituents, said Dresser. What sometimes gets forgotten in their efforts, though, is the responsibility that comes with advocacy. Consider what Dresser called “therapeutic misconception,” which occurs when a patient enters a research study without understanding the difference between a clinical study and treatment where there is an expected benefit.
“Many advocacy groups have promoted the idea that getting into a trial is the best way to get cutting-edge treatment,” said Dresser. “The patient has to understand that the reason the study is being conducted is that the doctors aren’t sure there is a benefit, and there are more risks involved.”
The ethics of patient advocacy is an important topic that isn’t discussed very often, according to Dresser, which is exactly why she wrote her book. These are issues that are shaping health policy, and “we need to be talking about them.”
Back to top
More Top Stories in this issue:
Return to Top Stories index
Return to Inside Fordham home page
Copyright © 2004, Fordham University.
|
