When Doctors Know Less Than Patients : Medicine: The pace of AIDS research has made old lines of communication obsolete. The Public Health Service is key to an overhaul.
In these days of AIDS, both physicians and people with HIV infection need to receive research information more rapidly than the old system permitted. U.S. Public Health Service researchers and various advocacy groups have worked well together to provide research information to people with HIV infection. But unless health service AIDS researchers are able to do the same with physicians, there will remain an unacceptable delay in translating research into improved patient care and survival.
Fortunately, with a little extra effort on the part of organized medicine and the health service, such rapid communication can occur.
In the old days, pre-AIDS, physicians received new information primarily at medical meetings and from medical journals. Preliminary information was often presented first at meetings, but the definitive, detailed information that physicians needed to make changes in prescribing medications was published months later in journals, which have a long lead time. This meant a long delay from the time important new information became known until it was widely distributed.
Many medical journals would not allow public disclosure of information until it was published. Indeed, if the information was disclosed, some journals would cancel the article. So researchers who need to publish remained quiet about their results to protect publication of their articles.
Much of this has changed with AIDS. Results of important studies about new medications or new uses of old medications do not wait for the next AIDS meeting or open journal space. Instead, they are announced publicly in press conferences and press releases in the mainstream media.
Advocacy groups for people infected with the human immunodeficiency virus have formed around the country. Representatives from these groups meet regularly with government researchers and usually receive press releases and research information the day they are released (if not before) and effectively distribute the information to their members.
But practicing physicians receive only limited information in the mainstream media and have no rapid, effective communication system like that used by patients. One good mechanism, Physicians Radio Network, does not reach all parts of the country. Another, the weekly publication American Medical News, is primarily available to members of the American Medical Assn. (less than half the physicians in the nation).
Two current examples illustrate the problem. Studies finished in August showed that low dosages of AZT benefit HIV-infected people with mild or no symptoms and a somewhat impaired immune system. The results of these studies, though widely reported, have not yet been published in medical journals. As a result, many physicians are reluctant to prescribe the AZT in mild cases or to use the lower, less-toxic dose.
The experimental anti-AIDS drug DDI is now available for people who can no longer take or benefit from AZT. However, in order to obtain it for patients, physicians must read two protocols of 27 pages each and a 33-page investigator’s book. Then they must obtain blood tests and informed consent, and fill out three forms for each patient. Additionally, the physician must make certain that his or her patients do not qualify for local research studies (no information was provided about the studies to the physicians). This is overwhelming for many doctors, especially for those with minimal support personnel, such as in city- or county-run clinics.
Sadly, no effort has been made to assist health professionals through this complex process, which apparently was established for physicians who are regularly involved in research. Many people who need DDI will not get it--at least not without an unacceptable delay.
In such situations, and in many to come, the Public Health Service must provide rapid, simple but complete information to physicians. The information must include a guide through complex drug studies like that for DDI.
The Public Health Serivce could, for instance, contact all major concerned physician organizations--national, state and local, including lesbian and gay and AIDS-related ones. These organizations would be asked to poll their doctor-members to determine which ones need AIDS research information on an urgent basis. The health service would provide the information to the organization, which could distribute it to its members within days.
This would require as little as one extra person in the Public Health Service and a commitment from medical groups to assist.
The AIDS epidemic is moving too rapidly for old paths of communication to work. When life-saving information becomes available, it must be distributed promptly to the people who need it to save lives.
