Vol. 18: Fall, 2000
Consumer Issues in Genetics
Systems Advocacy
Providers As Advocates
Editor’s Note: Ironically, as genetics permeates all areas of medicine, the impact of the medical, social, legal, ethical and economic ramifications will affect everyone. Changes in current systems must be made with the input and professional guidance of the medical community to guarantee that patients have the benefit of professional experience and knowledge working on their behalf as public and private healthcare policy evolves to accommodate the new medicine. Medical professionals truly are obligated to commit themselves to involvement in medical policy changes. Without that commitment, they will be as vulnerable as their patient to the effects of those changes on the practice of medicine.
"Who me? I’m a doctor! I have other things I need to be doing with my time. Besides, there are other people who are more qualified (better informed, more experienced, have more time) to do that."
Does this sound familiar? Every one of us, at one time or another has had this kind of a reaction. The reality is, however, that every moment of every day we are advocates. We advocate for ourselves; we advocate for our families; we advocate for our communities. Good citizenship requires advocacy. Most people choose when they want to expand their advocacy efforts and which causes are worthy of their time and energy.
This ability to decide where to direct advocacy efforts is not available for individuals facing genetic testing or counseling, or who now have a genetic diagnosis. When we (or our child) receive a potential diagnosis or label, all of a sudden we are thrust into a whole new world. The world we thought we had is no longer under our control. The advocacy of physicians on behalf of both individual patients and the system is absolutely crucial. Every physician can and should be an advocate for his/her patient. The child patient won't reach his full potential; the individual may not even live if doctors don't don the role of advocate.
Policy about the direction and role of genetics is also being made by public opinion and private entities without the input of the public scientific community such as those research groups funded with federal dollars and individual practitioners. Every man, woman and child will feel the impact of the policy which results. These discussions and decisions need to remain in the public domain.
Advocacy takes place at three levels: systems advocacy, individual advocacy, and self or personal advocacy.
Systems advocacy is intended to change the system in which healthcare is provided. State insurance offices, state health offices, state legislatures, Congress and the U.S. Department of Health and Human Services are only a few of the arenas for systems advocacy. Each of these entities has some level of control over what healthcare is provided, how that care is delivered and, maybe most important, what will be paid for and by whom. It is very important that physicians be involved at this level. They have the ability to explain the consequences of decisions (pro or con) in patient-specific terms and the implications for society as a whole.
Cloning is but one example of the need for systems advocacy. The broader impact of prohibiting cloning has received very little or no coverage in the media. All the reports have been about the cloned animal and how humans will be next. Doctors could and should be talking about the treatment of people who have been severely burned and what will happen to their treatment if cloning is banned.
Individual advocacy is time and energy spent advocating on behalf of an individual. Every physician does this over and over again in the practice of medicine. Each patient’s needs are different and many times it takes the doctor’s phone call or the doctor’s letter to assure the patient receives the necessary attention, whether it be tests or treatment. Patients must have faith that their doctor is willing to make waves on their behalf, not just receive payment for services rendered.
Personal or self-advocacy is the time and energy spent on personal concerns. Physicians are also people with families and issues that need attention.
No matter where we choose to spend the majority of our time in advocacy - systems, individual or personal - it is the fact that one is doing advocacy which is of prime importance. Physicians and other professionals must be at the table when decisions affecting genetics and other healthcare services are made for their patients, for their practice, for the future.
Contributed by Doris Husted
The Genetic Drift Newsletter is not copyrighted. Readers are free to duplicate all or parts of its contents. The Genetic Drift Newsletter is published semiannually by the Mountain States Regional Genetic Services Network for associates & those interested in Human Genetics. In accordance with accepted publication standards, we request acknowledgement in print of any article reproduced in another publication. The views expressed in the newsletter do not necessarily reflect local, state, or federal policy. For additional information, contact Carol Clericuzio, M.D., Editor, Department of Pediatrics, The University of New Mexico, Albuquerque, NM, 87131
Consumer Issues in Genetics
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